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The Long Road to Relief
It is understandable when folks voice frustration and exhaustion fighting chronic pain. Quite often finding relief comes only after traveling along a weary journey of "try this and try that," only to find options growing less, while symptoms continue to grow more. I truly believe the quest for relief in itself is so stressful and agonizing sometimes that this aspect of life adds to the suffering already going on.I was thinking back to the days when I had agonizing and unrelenting pain and I remembered how hard it was for me to find doctors who were willing and able to work with me. I remembered the time my doctor asked me to create a symptom diary so we could look at it together to see if there were any clues that might explain why I kept getting such severe debilitating headaches almost every day for weeks.
Well, the day of my appointment I was met by a colleague of his who was covering him for that day. When I met him he was rude and condescending. And when I presented my diary to him, he told me I was a hypochondriac and that I was too focused on my pain. He had no recommendations, made no changes to my treatment plan, and offered me absolutely no hope that day. I remember leaving that office in tears. I went from the emotion of relief in finding a doctor to work with me only to have his colleague insult me and treat me with utmost disrespect.
The hurt of that day over 20 years ago remains vivid to this day. As I type this now, I can feel my stomach knotting up and my breathing change. I don't know if that doctor is still practicing or not. I never went back when I knew he would be there. I was sure to tell his partner -- my doctor -- about it though on my next appointment and we did review my diary then. It is now over 20 years later. It took close to 6 doctors and neurologists and 7 years of treatment before I was able to finally gain control over my pain and get my life back. Most of the doctors wanted to bail out quickly when I found little to no relief from their prescribed regimens.
But I continued to become educated about my condition and the treatment options that were available and ultimately I proved to my doctor I was not a push-over. I was a partner in this team and I would have a say about my care. As we worked together, my doctor and I developed a very good relationship based on professionalism and mutual respect. But I think back on the difficulty I had to go through to find someone who would work with me. That struggle in itself was a painful experience I do not want to have to endure ever again.
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Technorati Tags: chronic pain, health and wellness, migraine
Labels: chronic pain, headache
194 Comments:
I suffer from migraines. I am supposed to take Imitrex for them. However, I am now unemployed and have no health insurance. I have applied for public assistance and got denied. I currently take Tylenol for them. However, I don't experience any dulling of pain or relief. I am Allergic to Aspirin. So, it makes it difficult to find an OTC med that might work. Any ideas?
How long does hydrocodone last in your system?
For the pass few weeks my foot buttom and my calf been hurting. The pain feels like a Charlie Horse pain, but it's not Charlie Horse. The pain comes from nowhere and sometimes i feel it in my sleep,what do you think it is?
I have been diagnosed with 2 calcified herniations at the T-6,T-7 level causing the spinal cord its self to be bent into a kidney bean shape and a gap in the cord...ever since they found it they act as though Im poisonous..they say its a level they have no experience in...only one doctor that we've found can even fathum the surgery and even then I have a 75% of morbidity. In the mean time I'm in horrible pain I have 4 kids young and i cant take things that make me too sleepy....is there anything you can suggest or a doctor that would have some way to help...Im currently taking oxycodone and just recently was prescribe methadone..because my insurance wouldnt pay for a fentenol patch....problem is I took one 5mg methadone and passed out for almost 10 hours...I need help Im always nausious from the pain and it makes me cranky all the time and its not fair to my kids please any suggestions to help are apreciated..nyima
I had a 2-level spinal fusion in august of 06. It was at the 2-3,3-4 area of my lumbar spine. One of the discs that ruptured went back behind my verterbrae. After the surgery my neurosurgeon said that if i had waited 1-2 more months i would have lost the use of my legs. i have permanent nerve damage to my back, also need a right hip replacement. having trouble, believe it or not, with drs. keeping me on pain meds. I was prescribed duragesic patches along with percocet (for breakthrough pain) and asked my dr to take me off of it because it was keeping me in a fog. we weened me off of it and now the dr has a problem with giving me percocet every 4 hours. how much sense does that make. i understand there are people who abuse the drugs that some of us really need and deserve. who can i bring this up to. i feel left out in the cold and in excruciating pain. any feedback would be appreciated glojank
Indie,
I am just reading this blog. I know the frustration of having doctors not believe you. I now have a great group of doctors. All of my doctors are in the same medical group and they all have access to all of my records. However, it's just recently that I feel like everyone is working with me and not pusing me off on each other. I don't know what has changed, but I think it is because I have remained a "squeaky wheel". The doctors now seem to be more willing to work with me and work me in when I am having problems.
You are right. It is a long road and it is hard to find people that understand. I even have a hard time getting my family to understand my pain is real.
Thanks for the great blog.
Michelle
Dear Indie and others,
I have found a family finally. I am isolated because of my pain and don't have a lot of cheerful news when approached by my few friends. Pain is really a life changing thing, so much at times that life seems a bit unnecessary, but I keep hanging on...not sure why...a flicker of hope remains. I have cried after leaving more doctors, and I knew I couldn't be the only one being treated this way, but I had no one to compare notes with. My pain/visits to doctors journey has also been years. And I can remember nights I cried out to God saying, "I can't do this another night." Yet, here I am. I am a extrovert by nature who has become an introvert by life circumstances. I live alone, which is okay, but I am beginning to believe I need to seek out girlfriends who understand and would become my group of pre "Golden Girls" (I'm 53) so we can meet at the kitchen table and support one another. Any women, who don't forsee marriage, who would like to become more social inspite of the disabling physical situation and who still have a sense of humor in this madness, please contact me. I can move to anywhere in the US. contact me at debby_mccarroll@yahoo.com with comments and ideas. Tired of hurting alone. Also, pain meds keep me from having much of an appetite, yet if someone puts food in front of me, I eat. Alone, I don't feel like making a good meal, so I am getting weaker and that can't be good. For all who suffer, please know that I send my love and prayers for relief. In its worst form pain is madness, sheer madness.
Yes I've had the same experience, that's why I always just go to walk-in clinics now and avoid my "family doc."
Thank-you for your story here! I'm glad I'm not the only one out there frusterated with the disrespect and lack of help I receive from *most* doctors, not just mine.
My husband thinks I am a hypochondriac, but I'm not!!!
I am in pain.
I know why I get my chronic migraines now b/c of an optometrist's diagnosis...I have keratokonus...but this disease causes a lot more pain for me than migraines. I won't bore you with all of that though...I'm just in pain that's all.
I suffer from spinal stenosis. I have had,in a ten year period, at least 5 discs herniated. Ive been told by two neurosergeons, you have a 50% chance the pain will be worse if we reconstruct your back. The last jerk ask me "why would you want surgery?". I dont know, because Im tired of suffering and I would give my right eye to get some relief? He just looked at me like I was a pile of dirt on the floor. I have been to the ER of every hospital in a 30 mile radious.The last visit was 02/19/07. I kept hearing, room 32,chronic back pain. As I laid there crying, doctor after doctor passed me over. I finaly ask for them to get my mom in the waiting room. Im 40, and that is embarrasing enough. AS soon as mom came back,this nurse came in like a was a human being and said Im your nurse. Im a human being and I used to work 1,sometimes 2&3 jobs at a time to make a living, and I loved it. INDEPENDENCE IS MY IDEA OF HAPPINESS. This deasease has robbed me of it. I have been given a lot of rx's:norco,methadone,vicoden,fenatyl,percocet,you name it I have tried it. TOday my biggest problem is finding pain relief without altering my mind. I can't stand not to feel like myself, out of control. Every rx, but the Norco and vicoden did this for me. I just want pain relief, not a mind trip. Here's the irony of it all. The Norco's work the best for my pain, but they will only give out six a day, it takes four to get me moving in the morning. I have searched on the internet.Wiki,a great place to find facts, states that Norco was made for Opioid tolerant patients that dont want to die from to much tylenol.That is the big worry.People, please make sure you don't take over 4000 mg.s a day. You are insured liver damage.I have never wrote a support group before, so I might be rambling. I apologize. I can't get my thoughts out right. I have been treated worse than an animal by my dr.s,ER dr.s,my family, you name it.I just want to be treated with a little dignity, but also get some pain relief. I used to think how bad it was a couple of months ago.What would I give to feel THAT good. This year I have also found out I have Diabetes, high BP,and sleap apnea. I wondered why I was waking up all over the house!!! ha!ha! If I don't laugh I will cry. I do both on an daily basis. Help anyone? If you were patient enough to read this, do you have any suggestions?
I wonder everyday why God does not take me home, Im nothing but a burden to society and MY FAMILY. I allways had pride, and this stupid body of mine has taken that away too.Believe me,I have had the pills counted out, I don't want to go to hell or be a wimp.SO if I have to live(for reasons unknown) WHAT CAN I DO?WE NEED A LAW PROTECTING PEOPLE LIKE US FROM THE ABUSE THAT IS HAPPENING ON A DAILY BASIS. I WOULD NOT WISH MY LIFE ON MY WORST ENEMY,COURSE YOU CANT HAVE ENEMIES WITHOUT FRIENDS HUH? Nobody want's to hear my problems anymore...I dont blame them. I didnt do to well in spelling, just use your imagination,if you still have one. ENDOFTHEROADINOHIO
I was recently discharged from my pain management program, I think for very bad reasons. I suffer from chronic pancreatitis, a very painful condition. I was with this program for about two years. My doctor kept me on the absolute lowest dose of narcotics he could, which was fine, I don't want to increase my tolerance. However, I always ran a little short. Many, many times I asked him what I should do if I was suffering a flareup of my disease--CP is a disease where patients suffer weeks-long flareups where the pain becomes mulitplied. It's not a situtation where I can take more pills one day, fewer another. My doctor always said, "you call me, you come in, we'll discuss it." At my appt in early January, I saw a junior colleague of my usual doctor. My doctor had reduced my breathrough pills the month before, but it wasn't working for me. But the junior doctor declined to increase my prescription, he said "he'd get in trouble and I should call the doctor if I had a problem." Shortly after that, I started suffering a flareup (I think I might have bile duct stones, something I've suffered from before.) When I knew I was low on pills, I called my doctor, told him the story, he had me come in the next day. Where I was promptly discharged for breaking the contract: you're not allowed to come in early. What happened to "come in and talk to me?" He also gave me the exact same prescriptions I had the month before, which I had to pay for out of pocket, and I found nearly impossible to fill anyway. He wouldn't change the prescription at all, not even for fewer pills. I'm very angry about this. My doctor had suggested in the past that maybe I should see someone who could treat me better, than he was only doing this as a professional favor to my GI doc, that he's really someone who does procedures, not medical treatments (narcotics.) I guess he was trying to get rid of me, but I wish they had told me flat out instead of taking the first opportunity to throw me out. I do have another pain doctor now, but I ran out of breakthrough pills before I could get an appointment and I'm suffering. My doctor treated me like a junkie, not like a chronically ill patient. I'm very angry about it, and I think I'm going to report him to the medical board.
I myself suffer from a condition called RSD/CPRS (reflex sympithetic dystrophy). I have had this for four years and it has left me at the age of 39 in a wheelchair relying on my family to help with some of my basic needs. I can not bear weight on my left foot, let air, water, wind, sheets, covers,etc.. I have not washed my foot since the injury on 10/30/02. That day will never escape from my mind because that is when my life came to a complete holt. My husband and children have been remarkable but this has been tremendous on us all. Not only do I suffer from sever pain I have fallen into a depression. I do not like knowing that there is little hope for someone like me and others. I have been threw a brain tumor,spinal meningitus, and complications from these surguries but bounced back with no lasting emotions. This condition though has grabbed me and will not let me go. Many doctors I talk with are afraid to operate on me again because this condition is known to travel to other limbs and ofcourse their will be fantom pain. I have taken this into concideration and will do just about anything right now to get upright again. My biggest fear is to be in this chair at such an early age; I saw my grandmother go threw this and that is what I don't want. With no support groups and no one who knows the exact hell that I am living I do everything just to get through the pain for my family.
lisainkentuky
I had a double lumbar fusion L4-S1 in June of 2006. After months of recovery, I have developed a new problem. My SI joints are now moving more than designed and I am in far worse pain now more than before. Like just about everyone else here, I have a doctor that prescribes the absolute minimum amount of narcotics. My reason for postig is a question. Is it true that doctors can be reprimanded (by who, I don't know) if they prescribe too many narcotics in a certain time period? If so, then what do chronic pain sufferers like myself do to get the medications we require to live a somewhat normal life. I recently saw a television newscast about a man that robbed a drugstore to get the pain meds he needed. Ironically, he now gets the medication he needs in prison. What has this world come to???
Help us!!!
I have been in chronic, intactable pain for the last 25+ years.
I've heard the same reasons as many of you have, "drug seeking behavior", "I could get into trouble" to "It's all in your head" and "Why do you keep coming back here?" I have been prescibed everything, Xanax, Baclofen, Proproxyphrene, Doxepen, Darvacet, Zoloft, Naprosyn, Valium, Cortizone and steriod injections, Imitrex/sumatriptan and ergotamine injections. Been through Physical therapy over and over, traction, TENs units, ultrasound, chiroprators and manipulation, tried herbal remidies, hypnosis everything out there that the VA had to offer for the last 20 years.
Finally in 98 I made it to a state where they have laws to protect doctors and their patients in pain who need narcotics to control pain. 600mg of morphine every 6 hours did the trick and after a couple of years I cut back to 400mg every 6 hours on my own. I have been at the 400mg x 6hr level for about 4 years now. My quality of life has changed from migraines 2 to 3 times a month to being able to control them with breakthrough meds like Vicadan and Fioricet. Now I have a few hours a day I can exercise, go for walks, help my wife with house chores and cooking. Play and record music and actually feel like I have a life.
Chronic intractable pain, fibro myalgia, CPOD, Anxiety, are just a few of the problems on the list and the pain has been the worst! Being persistant and being the squeaky wheel is all you can do in todays climate of the "War On Drugs." Have hope and keep going back to the doc,have someone with you when you go to the doctor, check your state laws on this subject, become well informed so you can communicate with the doctors on this subject and not be ignored or told its all in your head. You are your own best advocate, you also need a support system- friends,family etc. You must speak the truth to these people about the pain you are experiencing. Most of them can not imagine what you are going through and do not realize the negative impact pain has on your quality of life. Tell them!!!
signed,been to hell and back.
Keratoconus does NOT cause pain! It causes very poor eyesight as it progresses but no pain. I know because I have been living with it for 15 years, my mom has it, as does my sister. The only cure is corneal transplants and even that is not terribly painful.
That pain must be coming from another source.
i believe the pain in the legs that supposidly feels like Charlie horses is actually a serious syndrome...it's called RLS or also known as Restless Leg Syndrome...the muscles tighten and contract very fastly so it might feel like Charlie horses...Research about RLS...you will find some good methods of treatment.
I suffer from intersitial cyctitis. I had to go to 8 different doctors until I found a Urogynecologist who was familiar with this condition. This doctor did not make me feel that the terrible pain I was having was just in my head. This I.C. is the breakdown of the mucus membrane that protects the bladder wall. If the urine gets inbetween the mucous layer and the baldder wall it is like putting lemon juice on a open wound. Not much is known about this and I find it hard to find articules and treatments on line or any where else. Does anyone know more about this disease? I would like to know as much as I can about it.
I have been suffering from horrible stomach pains and difficulties breathing for about 3 years now and i have gone to doctor after doctor trying to find someone who can help me. However every doctor I have gone to has told me I am overreacting and i need to give the medications more time to work but i give th medicine 2 months to work before i go see the doctor again how long should i have to live with the pain?
If anyone has any suggestions as to what may help please let me know I am desperate to make the pain go away and get my life back
3 years and 10 doctors, I finally found a doctor that would listen to me. I had lower back pain with pain in both legs and feet. The first doctor put me on vicodin and that helped with the pain. I was then on my quest. I had a MRI showed it to every doctor I saw. I finally asked my GP to go to Pain Management. I had 7 injections and had no relief. By this time, my pain management doctor put me on morphine. I every 8 hours. My pain came back after 4.
I found a neurosurgeon that took a look at my MRI and in 15 minuted told me I had a fracture. (mind you that all the other doctors looked at the same MRI and told me nothing was wrong.) I had surgery within weeks of that appt and my pain has gone. I was 12 weeks in a brace and 16 weeks of PT. I still suffer from muscle strain and spasms and but it is slowly getting better. I feel Im lucky to find a great surgeon.
I would just love to tell these doctors to listen to their patients. I was told I was depressed and placed on paxel. (Gained 60 lbs: little side effect my doctor said.) I told each doc that was depressed because I was in pain and that I didn't have pain because I was depressed. NO one listened.
Something has to be done to help people with chronic pain get the correct treatment. Everyone I have talked to with the same symptons have gone through the struggle just to find a doctor.
Not everyone is just trying to get high. Some people actually hurt.
(OH, by the way, most pain meds are only 4 hour medications. Why do doctors perscribe them for every 6 hours?. Do they think we enjoy suffering for those 2 hours between doses?)
I have been very lucky. I have a doctor who has worked with fibromyalgia and is very knowledgeable and understanding. Have any of you tried Ultram to help with breakthrough pain and RLS? It helps me to be able to function when my main meds are tapering off. Also, I know of something that really helps, but you would really have to push yourself and I know how hard that is when you hurt so bad you want to curl up and die. I go to Curves, which is an exercise club for women only. They have very gently exercises, but within one week you will be able to tell you are toning up...and the best part is that you will feel better! I feel your pain...I have been there too. Don't be afraid of antidepressants..they can really make a huge difference. Good luck and God Bless!
Has anyone went to a pain specialist for treatment? They can prescribe things and are willing to that GP's won't.
I've had chronic lower back pain for just 1 1/2 year. I have my primary care physician coordinating all of the care that I receive from my neurologist, rheumatologist, and pain managment specialist. Just trying to find the right combinations of drugs, pain treatments, diagnositc test and physical therapy that can allow me to get my life back. It's been incredibly frustrating.
I have just finished reading through this entire blog. Some very interesting postings that I can relate to. Also as a professional healthcare professional I do see both sides of the equation. Research on the Internet suggests that most doctors UNDER medicate their pain patients!! Next time you see your doc, print out a copy!
I have had FOUR spinal surgeries, have fibro and severe osteoporosis. I had my first surgery in 1975......and I will never improve. Now I need to decided if I am willing to go with a Medtronic pain pump. Not yet!
Pain docs do PROCEDURES (epi's, facet, etc.) that's where the money is! None of mine would ever write a scrip......they'd send me back to my primary or to a clinic that specializes in takine people OFF of drugs............no one wants a law suit!
I am opiate tollerant.......I have to have a general for things as simple as an endoscopy or colonoscopy.......3 of versed and 3 of fentynal won't touch me. Any morphine derivative gives me horrible headaches, takes my mind off of my back! Demerol derivatives help more.....Soma, which metabolizes into demerol in the liver, or Dilaudid.
I have been doing this without ANY pain meds for the last two years, to see how much I can tollerate...so I spend at least four days a week in bed.......it's caused problems with my lungs....etc.
I can no longer tell if the pain is due to my back, which has four more herniated discs, my FM, or my osteoporosis in my hips.......it all runs together.
I know that most docs will NOT do a fusion on anyone who has used any type of tobacco product in the last two months. If yours will.....find another one!
I stay very thin, (of course that has not helped the osteoporosis, but does help my back) I don't drink alcohol, use caffeine, smoke, and have no more fun vices!
The most frustrating part is going from doc to doc.........it's so much of an effort to get there and yet each appt for each body part needs to be booked separately for insurance to pay..........the politics of healthcare!
Hang in there everyone and fight for your rights.........NEVER abuse your meds or no one ethical will ever write for you again.
I need help for my mom she is a big woman usually about 330lbs shes a wonderful person and has been having sickness in her stomach for a very long time her legs always ache yes they are a little big but in just 2 weeks she
has gained 30 lbs in fluid in both of her legs she's at a point in her life when she wants to get healthier but everything is going wrong. Shes not a big eater , though she drinks alot of fluid she has changed the soda to flavored water which I'd think would help but she's getting worse can someone help me help her shes only 64 and the hospital wants to put her in a nursing home does anyone know what might help her with the water gain and the stomach sickness all the time Please write me at rishkefe@yahoo.com
thank you
Nancy
THANKS for this well articulated article! I've just reached this same epiphany of relief. I had pain in the index finger metacarpal-phalangeal joint for ~2 years. Searing pain when you touched or bumped it, especially in one spot. I started with a recommendation of a friend for a hand specialist; his elitis attitude threw me out of his office; "I'm not an orthopedist". He referred me to another hand specialist who retired after 2 appointemtns w/ o diagnosis. Not RA; no blood markers. I knew this wasn't going right. My third specialist ran lots of diagnostics (poorly) and finally said, "I've given you the Caddilac work-up, what more do you expect?" I finallt found another group at a major university where the hand surgeon said, "You have a bump in the joint which is painful, is that right?" I said yes and her reply was, "Well then, I'll remove it". This has taught me to be your own advocate. Trust yourself that sometimes the advice you're given just doesn't fit what you're experiencing. Don't have blind faith, but have good intuition.
tomorrow i am going to take the trial for medtronics pump of which
i have no choice it the last resort
i have had back problems my whole life starting at 11 my parents and guardings thought that it would stop or i would grow out of it you see my grand parents raised me i did chores in the mornings before school and after school and all of my life i had very tough jobs until i finally got a job doing less and had more pain than before every year until i could take it no more list of doctors,chiropractors,injections,
strecthing,more injections,fusion surgery 4 disc spaces,now 4 pain pills + pain patches from 50-100mg
i am at the end of my rope pain has consumed my life sometimes i can't get along w/my wife and it's all because of this pain please,please pray for us.....i don't have any other thing that i can do i already see a phyciatrist and therapist.....lord help me
As I write this I feel my troubles are empty to so many peoples but I will proceed in hopes as we all do here. My feet are "killing" me. My legs hurt to, but only to about halfway up to my knees. Sometimes it hurts all the way to my bones. Sometimes it feels kinda numb to midway up. I can't really explain it, but my feet hurt so bad I could cry. I am a little over weight (maybe 20 lbs) and I have also been told that I will need a hysterectomy but I have no insurance yet.Trying to find a insurance place to send u info in the regular mail is like asking for well......everyone want to tell you over the phone and I like to see it in black and white. Anyway I am rambling...so sorry. Does anyone have any idea what my problem is? I have my blood sugar checked and have never been high, As far as I know it has never been over 80 or so. I am 46 years old and have always been in good health. Don't hardly ever see a dr. Any help will be GREATLY appreciated. Thanks.
I feel so sorry for all of you after reading these comments. I too am in constant pain and have had the struggles with dumb, inhuman Drs firing me because they can't or won't help me. I have one now who is a little better so far. I have lost most of my friends because I have to do things in a wheelchair so they don't ask me. If it wasn't for my dear husband I don't know how I would go on. Thank you all for sharing. Hugs from me.
Oh My!
Hugs to everyone and a BIG I hear you!
I was hit by a truck while riding my horse in '03. He was doing 55 MPH and it's a miracle me and my horse survived. Of course, the idiot who ran into us had no insurance and I've never had health insurance, so on top of all the bills I can't pay I'm still dealing with trying to get treatment for the condtions I now have due to the accident.
Not only do I now have terrible back and neck pain, migraines, and insomnia, the accident made my TMJ 1000 times worse. I saw a surgeon, he said it will take $25,000 to fix your jaw with a 50% chance that it will even work. Try that with no job and no insurance. HA!
I live with my pain every day. My "family Dr." will give me meds on occassion, with no refills. He tells me since I can't afford surgery we have to treat it with meds. He gave me 30 Lortabs, told me to take ONE every 6-8 HOURS. I called back 10 days later......you guessed it, "Sorry, we can not refill your medication without you making an appt." ARGH! I just saw him 10 days ago.
AND YES I WAS UNDER MEDICATED!!!
I can't function in this kind of pain anymore.
I have a 6 yr. old son I can't even play catch with because of my back pain.
I can't smile at him for fear of my jaw spasing out.
I've decided to try one of those online Dr.'s. I just hope it's not a rip off and I can get some meds that actually help since every Dr. I've seen in the last 4 yrs. only wants to help if I pad their wallet.
Ok Listen up!!!!!! Pain is the 5Th vital sign. You have a right not to experience it! A doctor cannot refuse you treatment (Narcotics)So get out of your beds and off your couches and exercise your rights!!! I have the most wonderful docs in the world! Still At some point every day I am in pain. Also in response to an post I read. They cannot prescribe percocet every 4 hours unless you are in the hospital. Also good luck with that dilauded!
Like many of you, I have read this entire blog and could so relate to most all of you. Both my husband and I suffer from chronic pain. Try getting a doc to believe THAT one!!! We have been suffering (for different reasons, same pain) for nearly 15 years and have gone through the guantlet of all different types of docs, meds, treatments, therapy, etc. and almost lost hope. Finally, I saw a program on TV about a doc in CA that dealt with chronic pain. At the time we were on the East coast!! I wrote to him though, and he sent me a letter recommending us to a doc in our area. Hallelujah! We went, apprehensive because of the attitude of so many docs that "You must be a drug addict, or hypochondriac, or just depressed", but lo and behold we found a kind and compassionate GP who specialized in chronic pain management. He spent 4 hours with us, gave us scads of info to read, intreviewed family members that were with us and gave us the info on what it would mean to be on narcotics for the pain. He was the FIRST doc in years of struggle and stress that gave a damn, not about the money (he was not a rich man), and not about the feds (he knew his rights and ours), but he cared about the individual. This man went to great lengths, as far as possible unto himself, to make sure his patients were not abusing their meds. We were with him for many years and during that time, our pain was eased to the point of being tolerable. WOW we actually had quality of life again. BUT danged if the feds didn't persecute him right out of his practice. The man was a pioneer, a hero. He tried to find us another doc, but... After awhile, we found a wonderful, caring neurologist to take us in. He, too is a pioneer, so everyone keep him in prayer, and us...but for now, he helps. We will pray for all of you in pain, and for your docs who are willing to do the right thing and HELP YOU!
I got injuried in 1995 and developed RSD. The Pain Doctor wants to take my left leg off. But I haven't deceided yet, My doctor does want me to get a Spinal Cord Stimulator put in. If someone can gie me some insights about this treatment PLEASE DO !!!
Last Feb. I underwent a 3 level L4-L5-S1 lumbar fusion. The 2 years preceeding that were ungodly. I was 39, divorced and in such excruciating pain. I was fortunate to have had a friend recommend that i see a pain management dr. He was compassionate and understanding. I did the epidurals and took the pain meds. In the end, I did have to have the fusion, which turned out to the be the best of the worst 4 months of my time with the back pain. The recovery was long and painful, but a different pain was upon me now. Physical therapy was hard and aggravating, but now, I am 98% pain free. The only pain I have is when overdo cleaning or shopping for hours... Oh, also, you might want to consider water therapy to help get you moving if you decide against surgery. it feels great and lets you move around with much less pain then on land!
I read all of your blogs and you all are in my prayers. I'm a 33 year old who has had 2 diskectomies and 1 lumbar fusion, all within 10 months of each other. I had a herniated disk that was pressing on the spinal cord. I had my first surgery and 6 days after it, I had a reherniation of the same disk. So 8 days after my first surgery I was back in the hospital for my second. After that one the docs couldn't figure out why I was still having so much pain. It turns out that they had removed so much of my disk that I had bone rubbing on bone. I saw a pain doc and went thru facet injections and being on Morphine. Then I maxed out on the steroids so they looked into having a fusion done. I have spent the last 7 & 1/2 months trying to recover from the fusion. I saw the pain doc again and now they want to take me off the morphine. My employer wanted another Leave of Absence form filled out and the nurse for the pain doc informed me that he wouldn't fill it out because he wasn't "Treating Me." I told her that it was my understanding that prescribing meds and office visits was treating me. Her reply was that my doc was only writing my scripts so I could return to work. I laughed and told her that was funny since I hadn't worked but 3 weeks in the whole 19 months since my injury and surgeries. I needed to have the form filled out or my employer was going to terminate me. So I had the form faxed to my surgeon who released me back to work with NO RESTRICTIONS because my bone graft had healed. I had only had 3 weeks of PT before I had to stop due to increased pain. I also wear a tens unit and hard-shell brace. Now my pain doc is no longer with the clinic (I received a letter informing me after the fact) and the doc who is supposed to take over would not write me a script for my break thru pain. I've called several times for information and now the nurses and doc won't return my calls. The last call I made was to find out if there was something over the counter I could take. I had to go back to work 2 weeks ago and have missed 2 & 1/2 days of work already. I've also been to my ER for my pain being out of control. The ER doc suggested I see my GP for a script just to tide me over until my appt. I'm lucky to have a decent GP, but he doesn't feel comfortable prescribing narcotics. I am not a drug seeker, nor am I faking my pain, but lately that's how these docs make me feel. I asked my GP if he knew of another pain doc or clinic just to cover my bases. I don't want to be stuck without a doc and I need to get this pain under control. I just want to have some quality of life again. I'm lucky that my boyfriend is so understanding and supportive, but I really feel like a burden on him. It's not fair the way it is now and if I lose my job that will just be that much more he'll want to take on. I'm sorry if this seems kind of scattered, it's the first time I've written about this to anyone other than family and a few friends. If anyone has any suggestions I'd appreciate it. Good luck to all of you out there dealing with chronic pain.
Thank you for reading,
Frustrated in Wisconsin.
I had a massive DVT several years ago, and prior to that I had strep so bad, the doc thought it turned to rheumatic fever. I still suffer a rhematoid heart murmer, and will for life.
Presently aside from my heart, I have optic neurits, calcified nerves (throughout my body), fibromyalgia, phosopholipid antibody syndrom, and who knows what esle. MRI's have shown that I have spots in my brain which the neuro can't explain. They are getting worse, and I am now scheduled for an eeg1.
My question is, how do I get away from the pain, and the occassional temporary parallasis? I need some answers!
Oh yes, I also have had some strokes, although the neuro isn't entirely sure of that. He thinks they may be sezures, but again, says they don't present as anthing he's ever seen before.
As I sit here reading all of the post I can relate to those with chronic back pain.I was involved in a car accident where I was hit by a big utility truck like the power companies have,anyway I am having the worst time with pain.I have had x-yrays showing the whiplash in my neck and my spin is out of alignment and somehow my left hip is higher than my right.I have done at least 2 1/2 months of therapy,i've been adjusted many times,and so far nothing has worked.I have MRI'S cervical,brain, and lumbar and according to the doctors they show nothing.I have asked them to explain why I can't stand for more than 5 minutes without pain.I have trouble with my legs if i sit for those same five minutes and try to walk my legs won't go.Now I have to use a walker.My quality of life sucks.I have three grandchildren that are 2,4,and 6 I can't do anything with them because of the pain.I don't have the desire to leave the house except for drs. appt.I afraid I will become depressed if i'm not already there.I feel like I have lost myself,I can't enjoy my husband.I'm afraid I won't be able to work because the pain is so unbearable and the only job i've ever worked was fast -food which requires a lot of standing I can't do a sit-down job because i have no experience.I have been precribe lortab 5 and 10 ultram,flexril and none of them have helped.Tomorrow i'm scheduled to start steroid injections and I am hoping this treatment works.Sorry to have rambled but this is the first time I have been able to vent my frustrations except to my lawyer who seems to be treating the way the drs are like it's in my head, but he has the pictures to show i have a valid case.The problems I guess is the fact the MRI'S don't show anything.If anyone has any suggestions on other test that can be run or a different doctor I should consult please send me an email at sunshyne3911@yahoo.com.Thanks for your help.
I went today and saw my new pain doc. She is taking me off of the morphine and putting me back on neurontin again. I was on this med last year and it didn't work then, why do they think it's going to work now? She also prescribed a med to help me get thru the withdrawal process. I'm so sick of spending my time and money on things that don't work!! I know that these docs think that they know everything, but would it hurt them to talk to us, instead of at us. This was the first time I even met this doc and she spent all of 5 minutes with me. She didn't even do an exam! What kind of doc does that? I'm not even sure what else to do, other than take the meds and hope they work. Does anyone have any suggestions?
Frustrated in Wisconsin
First of all, for the person with RSD who is thinking about the spinal implant, DO MORE RESEARCH! My mother has been living with RSD for almost 20 years. She had a support group in our hometown and several of her members had the implant and found NO relief. In fact, it ended up causing more pain because of malfunctioning units, etc. In fact one woman had to be revived during surgery because her heart stopped as they were implanting the device.
I myself have recently been diagnosed with CPRS/RSD. Atleast by one Work Comp Dr. Why is it that 1 out of 100 drs actually gives a crap about their patients and the rest just want to get you out of the room? I saw my new Dr on Monday and he informed me that since outwardly I didn't present with "typical" RSD symptoms that there is nothing wrong with me. My mom never presented with typical symptoms either but everything I've described to her as far as my pain goes is EXACTLY what she was going thru when first diagnosed.
If we pay into WC why can't we find doctors who are more about the patient than the stupid insurance companies? Yes, I need the money they'll be "providing" me with, but I just want my life back. I'm 36 years old and have lost a huge amount of use of my hands and arms.
I believe I have FM, I have all the symptoms. My Dr. has done every test he can and I am awaiting a rhuematology apt. I was treated for tennis elbow 6 months ago with a cortisone injection. Now I have atrophy to my elbow, stretched muscles and tendones and pigment loss to the area. Could this be caused from my FM? Is it possible that it is the doctors fault? How can I alleviate the pain? Which kind of doctor should I see to fix this problem? Please, any info would help....Kristi/MA
To the last anonymous poster wondering about FM, please post to our Fibromyalgia: Support Group message board.
A long road to relief is right. I suffer from RSD from an electrical trauma. Presently, I am prescribed on Neurontin and am at the 2700 mg level. My medication does nothing for the pain from the RSd or the migraines, all ir does is make me droozy. My autonomic nervous system is even affected and right now 3 of my doctors say there is no other treatment to give me. I used to be in the medical field myself as a former U.S. Navy Hospitalcorpsman and then after a Nurse/Paramedic in Pennsylvania. I was in school to finish a degree as a Physcians Assistant when I was injuried and contracted the RSD. I now know what alot of my patients went thru. My specialty besides emergency medicine was neurology. I knew what to expect with this, but wasn't ready for the actual pain levels I am feeling. All I can now say is good luck to everyone else out there with this affliction. You are not alone in this fight. RSD/Chronic Regional Pain Syndrome is a Neuromuscular disease and it should be recognized fully just like Muscular Dystrophy is. There should be more public awareness for our disease.
oxycontin is no longer generic.
My doc switched me from oxycontin to norco today to treat muscular dystrophy. For migrains imitrex. For migrains and seizure disorder topamax.
Does anybody know of anything better?
I too have been in the same boat as nearly all of you! I have had 4 back surgeries and never thought I would find relief. I discovered that my first 2 surgeries were done incorrectly and my pain management doctor never gave up and found me a fantastic surgeon in another city. He believed it would take 2 surgeries to correct everything and he was correct. I am fused, stablized , cages, rods, screws, the whole nine yards fron T11-12 all the way down to S1, with screws into my sacrailiac bone. My last surgery was 8 1/2 hours long and was in Feb 2007. I was up and walking six hours later and was off all pain meds in 10 days. I did have a set back with my SI joints because of the stablization being so large. It is very, very painful and I have had injections and in 3 months they are going to burn the nerve endings off the SI joints. This can only be done on the back side of the joint not the front so I hope it works. I am telling all this for the other person who wrote about SI joint problems and there is help for this problem.
Also, I suffer from fibro, RA, depression, mild tourettes, severe muscle spasms in my legs, carpel tunnel and transgeminal neuralgial. What I trying to say is I can relate your pain. My pain management doctor spends no less then an 1 1/2 with me every visit and works on solutions not drugs. Believe me I still take plenty but she was quick to get me off pain meds and find other ways to relieve the pain. I am so thankful that I am no longer tied to morphine, norco, percocet, ultam, and on and on. Although I do not have RSD I know many people in my pain support group who do and they are switching to my pain management DR. because she said there is help and often cures for RSD. I'm not sure where all of you live but as long as you sign the forms about abusing drugs there are no problems getting any of the drugs you are talking about where I live. I know this sound silly but trying to stay positive and finding a way to laugh through some of the pain ... it's great medicine. Fibro can be helped with massage, the way you lay in your bed at night ... try a body pillow, theracanes, and many other things that don't involve drugs. Does it take time yes ... but it beats living the way we do. Someone posted pain pumps ... I would not go that way ... have seen too many disasters with friends from that and I would never amputate a limb for RSD until I found someone who really knows how to treat it. Therapists and support groups you actually force yourself to get up and attend can make a huge difference in your mental status. I have seen many people in my group do better and grow incredibly by attending. Of course we have to force ourselves to do some lite exercise. Trust me I know the pain you are all in as I am too, but keep searching for help. Your posts made me so sad and made me want to fall into a bad depression about myself today. I am going to try not to go there ... in fact I'm going to go see if I can find something to laugh about! I wish you all well and hope you find the doctors you need as I have.
I just found out that I have RSD in my left thumb/hand. Anyone know of any good treatment before it gets worse? thanks, tammy
I pray for all of you. I have had 6 ruptured disks, 6 back surgeries, including 4 spinal fusions. L4-L5 posterior, and anterior...L5-S1 posterior...C5-C6 anterior, C6-C7 anterior. Dating back to 1983, back when the FIRST OPTION was to fuse, fuse, fuse. I attempted to take my own life just because of my non stop, intractable, every waking moment of my life, pain. I would never let them fuse me if I had 20 years of hindsight. They have tried everything for me...I am currently on oxycontin 160mg's a day, eight NORCO's for breakthrough, Baclofen 40 mg's a day, and that still does not do the trick. I am so depressed, I see a psychiatrist/pain Doctor, plus my PC Physician, and now I have another ruptured disk (my 7th)another bulging disk, and spurrs on my double 360 degree fusion in my lumbar spine, and I am ready to give up.....AGAIN...I do not want to play golf, or anything strenuous, I just want to be able to walk, and drive a car without crying out in pain every day of my life. What's done is done, but to everyone out there, DO NOT LET THEM FUSE YOU, especially 360 degrees in 5 different places. It literally does make you want to take your own life sometimes. They are going to try something else on me, because I will not accept a 7th surgery. Pray for me, I will pray for you. God Bless.....
I am glad to see that i am not alone, but sad to see that some know how it feels. Every doctor is so afraid of getting sued it seems, that they will NOT treat your pain. I have fractured my L5 and have had Sciatic pain in my leg that I can not stop. I am not a druggy looking for pills, I am a human trying to make it through the day. The biggest problem I have had besides the pain is the depression caused by the pain, and loss of "life" as I knew it. After waiting for over 2 months to see a Psych. he was an idiot with no experience with chronic pain. My surgeon informed me that the only real solution is to fuse L2-L3 and L5-S1 and cage them. I don't really feel like there is much of a choice. I am at the end of my rope and need to find relief. I currently have a wife and a 3 year old son, man i wish I could be their husband and father like I used to be. I hope we all find relief. A few of the blogs mentioned living in states where the doctors can actually treat pain, but don't say what states these are.
I have had RSD now for a year now in my left knee. i know i have not been in pain as long as alot of you but being this new is hard to deal with it. i am very grumpy person now depressed and i don't feel like myself anymore. i am supposed to walk with a cane but i try as hard as i can to use my leg as much as posssible. my husband has been understanding with me and has stuck by my side through all of this caos. we are tired of the run-a-round the docs have given us. we have been through enough, i have had 2 miscarriages the most recent was this march, although i was not trying to get pregnet i was on alot of narcotics which i believe have caused the miscarrage. the amazing thing was that while i was pregnate the pain in my knee was gone, my doc does not understand why but 2 weeks after the d and c the pain came back worse than before. i was oxycotin before the pregnancy and when i went back to it after the d and c i am now allergic to it. i have been on percocet(allergic to it as well), lyrica(which didn't do anything for my pain),loraset and others. i am currently on vicodine now it helps some but it is better then being with out any pain meds!!! i have been fired from my job do to the rsd because i could not preform my job duties. so now we have less money to be runing around to doc to doc. i am afraid that my doc will not help me much longer he does not like to prescribe pain meds. we are trying to get our car fixed so that we can travel to st.louis mo to see a rsd spesilist. i hope we can see him soon and i hope he helps!! i would like to know if anyone has any suggestions that would help me. i am tired of being in pain and would like to know what options i have. my last pain doc will not see me no longer cause i wanted a 2nd opinion when his only offer to help was with the spinal cord stimulation. i feel i am too young to have rods but in my back. so if anyone can help i would greatly appriciate it.
I had migranes for years from my 20's until 40's. Any meds would be thrown up if tried taking them. I found that two things worked in some of the headaches, either something greasy (like a fried egg) kids could make for me or crackers if not so bad. This would work on the ones I would call minor attacks. For the big one it was bed until I could throw up, can't make myself so this took time. Now almost 60 and have maybe one bad headache every year or so brought on by the environment. I always felt that the headachs were in responce to things around me as much as anything.
I just came across this message board. I to have been suffering from RSD for 16 years now. I was diagnosed when I was 13 and not many doctors knew what it was or how to treat it.I remember one doctor telling me I was way too young to get a condition called Reflex Sympathetic Dystrophy even though I had all the symptoms, just from a sprained ankle in gym class. I never thought in a million years that a sprain would or could turn into what has been going on in my life the past 16 years. I came across a post from a guy that is thinking about amputating his leg. DO NOT DO IT. That is not a cure or a treatment for RSD. The RSD can come back in the rest of your limb and you could still have phantom pain and severe phantom pain. Please before that is even discussed get a second, third, fourth and fifth opinion. I myself tried both the spinal cord stimulator and the peripheral nerve stimulator. Im not sure of the condition you are in and how long youve have RSd and what other treatments you have tried but I do know alot of people that have had pain relief from the stimulators and some diagnosed with RSD as well. Please before amputation is even mentioned again see nother doctor. It kind of scares me , no it does scare me that your doctor who is treating you for RSD even mentioned rthe word amputation to you.Try and feel better,If you need to talk feel free to email, My prayers are with you..I also read a post from a woman just recently diagnosed who has nobody to talk to. Also feel free to email me at BooBoos24@aol.com. I am now 29 and have had RSD since I was 13. It hasnt been easy ive tried every treatment every drug every therapy so I know how hard just waking up can be. Again my prayers are with you all and if any of you need to talk please do not hesitate feel free to email me.. Feel Better..
Hello fellow sufferers!
I have read a great many of the comments posted here and I suggest reading the book "The Truth About Chronic Pain" written by Arthur Rosenfeld. It was published in 2003 but it may still be around. If it's not, order it! It changed my whole outlook and it gave me a lot of hope. You should also get your Doctor to read it too.
Half of it is interviews from patients and half from Doctors. It was very helpful and hopeful.
On a personal note though: Most Doctors subscribe to the concept of “Voodoo Pharmacology” and either can’t, or won’t, admit that it’s just plain stupid.
“Voodoo Pharmacology” is the belief that if a person who is happily married, with kids, good job, a homeowner, pays his bills and taxes, and is basically an upstanding citizen until they are introduced to a narcotic. Suddenly he abandons his marriage, his children, loses his job, and sells his house for drug money and becomes a homeless, gutter-dwelling drug addict. And all because a foolish, under/poorly trained Doctor gave him a narcotic based drug such as Percocet, or Oxycontin, to treat his chronic pain.
Sadly, there are far too many, (what I call ‘old-school’), Doctors who firmly believe in “Voodoo- Pharmacology”, and too many Doctors who can’t be bothered to put faith in their patients. If conventional, “safe” drugs can’t solve the problem, surgery is not possible, and physical therapy has reached it’s limit, most Doctors simply get annoyed at the patient for having something they can’t wave their diploma over and fix with their prescription pad. More than one so-called medical expert, a.k.a., ‘Doctor’, told me to “go home and learn to live with it.”
I call these Doctors "Narcophobic" for obvious reasons. But don't give up! I suffered for over 10 years but I found the right Doctor. For the first time in years I could get out of bed in the morning without help, I could put my pants on without help. All the things that no one gives a thought to but were denied to me for years because of such terrible, unending back pain, were now things I could once again do for myself. The quality of my life improved dramatically in less than a few days. There is not a day that goes by that I don’t thank God for him and, not a day goes by I don’t thank him for having faith in me and for not subscribing to the idiocy of “Voodoo Pharmacology”.
It takes time and you have to keep up the pressure. So many times I would wake up and cry because I didn't die in my sleep and I had to live through another day with such horrible pain. But.. you have to believe that you will find the right Doctor who will help.
I am a 26 year old female who has RSD diagnosed in both legs and my left arm. I am completely dependent on my meds to survive a day and I just got news that my left arm has the disorder from a med error done by a doctor. I am so completely devestated because of what I have gone through with my legs. My legs didn't get diagnosed for 18 mos and the disorder resulted from bilateral femoral derotational osteotomies. I went back to my surgeon several times and he just kept pulling out hardware since he thought my legs were having problems from that. My arm is getting disabled fast and I am scheduled for a sympathectomy next month. I also have a spinal cord stimulator which does give me some relief in my legs. I can't handle having fabrics on me and rarely do I put on a dress or shorts from all the temperature changes. The surgery next month will be my 16th in my short life, but I am determine to try to stop what has disabled me already in my legs. I didn't know this disorder existed until I was told I have it. I am a registered nurse and my job is extremely effected by my disorder, though my colleagues are very supportive. My boss told me that she can't believe how much pain I am in and still manage to work. My migraines also have been out of control and I am in the hospital every month since being diagnosed. I am trying to remain positive and I am trying to survive. I can't call my life living, but I am surviving. My husband is amazing though my relationship suffers tremendously. I have a three year old son as well, who knows that he can't touch me sometime because of my tears. He thinks I cry because of him which breaks my heart. My bothers rejected me saying that I was a bad mother until my mom and I brought them all my meds and showed them my life. They now are supportive. I have been to 15 doctors in the last year and a half and they all tell me that I am a nice girl, but I have a severe problem. I have trouble getting meds, and I am trying to find a new pain clinic to go to, because my pain doctor was the one who pushed the wrong med in my IV causing the blood clot and the RSD in the left arm. Any suggestions let me know? I have had so many spinals, physical therapy appointments, shots, and meds I can't even describe. My husband says I suffer from a deep depression and looking at it I believe I do, but I am so good at covering it up and smiling. The pain is horrific and three out of four limbs is brutal with this disorder and I have evey single symptom in all of them. I want relief, but I don't know what to do. I pray for anyone who suffers from pain and this disorder, I hope all of you can survive though living is hard.. Again if anyone knows of awesome pain clinics that work with pain meds. Let me know..
P.S. For anyone interested the med error was vistaril IV. DON"T LET ANYONE GIVE YOU THAT IV.
I SUFFER FROM INCURABLE CHRONIC PAIN. I HAVE HAD MIGRAINES SINCE THE AGE OF 7, AT 30 I SUFFERED A STROKE (DUE TO THE MIGRAINES) AND FOUND OUT I ALSO HAVE DEGENERATIVE DISC DISEASE FROM MY NECK TO MY TAILBONE AND LETS NOT FORGET OUR FRIEND ARTHRITIS. ALL THE DRS AND SPECIALISTS CAN TELL ME IS THAT I WILL NEVER KNOW ANOTHER PAIN FREE DAY EVER AGAIN. CURRENTLY THEY HAVE ME ON 30MG MORPHINE, HYDROCODONE5/500 EVERY 4 HR, NEUROTONIN 300MG 3XDAY, PERCOCET MAX DOSE 2XDAY. TO BE HONEST NOTHIN HELPS ALL THOSE CHEMICALS TOGETHER BARELY TAKE A SMALL EDGE OFF BUT THAT IS IT. IF ANYONE KNOWS OF ANY OTHER HOMEOPATHICS OR OTHER IDEAS THAT MAY HELP I AM VERY OPEN TO ANY SUGGESTIONS YOU CAN EMAIL ME AT BRIGHTSKY6172@MSN.COM
I have had type 1 diabetes for 30 years.I have a foot that is deformed,I have had triple bypass surgery,a year later a stint,and many more surgeries.I have severe stomach problems,acid reflux,esophagitis,bleeding ulcers.I woke up from heart surgery and my right ribs hurt,that was 7 years ago it has gotten increasingly worse,pain consumes my life.I have no insurance,medicaid,medicare or disability.I got stuck with a doctor in 2000,I had medicaid then for about 3 years,I begged this man to use a combination of drugs to treat my pain,he said that he could not because he was in trouble with the DEA.I had to have half of a hysterectomy,while I wasjust out of surgery he calls my obgyn and tells him to give me nothing for pain.He would give me 30 lorcet 7.5 a month,it did nothing,I begged him to send me to a pain clinic,he came in my room shut the door and told me that he made money off of me and his other patients,and he would not allow us to get better doctors because that took money out of his pocket,but I tried to see other doctors and he would tell those doctors that I was a drug addict.I live in SEVERE PAIN EVERYDAY,the pain meds do not stop the pain,it eases it a bit.Recently I had 2 bad falls,because of my deformed foot,I have suffered for 2 weeks,I taste blood,I went to 2 hospitals they did a chest xray,no treatment,people will tell you what to do and these same people have never been in pain,it is frustrating,and heartbreaking,since 2000 my life has changed dramatically,I am at the end of my rope,all most doctors care about is money.Can someone help me,I am not a whiner,and I do not want pity,but this pain is sucking the life out of me.
This is to the poster who said that their Dr. wants to cut their leg off... Oh please, don't do that!! It will only make your RSD WORST!!! Please, before you even give this a thought, go and do research and when you go to the Dr (who wants to hurt you more) take that research with you to show him or her that cutting off your leg WON'T take away the problem.. the RSD!! What will happen is, you will have nerve endings just dangling there which will bring you sooo much more pain!! I go to see my pain Dr. on Monday and I can't wait to tell him what I read. I know he's going to be VERY shocked just as I was after reading what he/she wants to do to you. How do I know this? My pain Dr. told me. One day I went to see him and I had had a very bad week with my pain in my legs and I told him "I just want you to cut them off" and he told me "that would be the worst thing to do, it will only cause you more pain, harder pain, if you can imagine that!! He told me to get on line and research RSD which I did and when I read what will happen if you cut the limb off that has RSD, I was shocked!! Even though at times I still feel like cutting my legs off, I just know that this is NOT an answer to my pain!! So please, do your research and show him or her what you've found out and if that Dr. still wants to take your leg off, find another DR. FAST!! PLEASE, I BEG YOU NOT TO ALLOW HIM TO TALK YOU INTO THIS CAUSE IT'S ONLY GOING TO HURT YOU!! You're already going through enough pain, why invite more??? If you would like to talk to me, please feel free to contact me at ipimphim143@aol.com (excuse the name..LOL) I've been living with RSD for over 7 yrs and I know a lot about this horrible illness. Like I did, you too can learn about RSD just by going to the links provided on the net. One thing I did which my Dr. told me to do I might add is.. I went on line and learned all I could about RSD so that way if I went to a Dr. or saw a Dr. at a hospital that didn't know about RSD, you know, the Do's and Dont's, I was able to stop them from doing something that would hurt me instead of helping me!! That in itself has made a big difference in my life. I now stand up for myself and I'm not afraid anymore to speak up to a Dr. cause let's face it, they may have that degree but they DON'T know everything!! I learned that too. Also remember, the only person who's going to be the best advocate for you is YOU! Educate yourself and speak up when you know you need to. Let's face it, they're only Dr.s not God and they're NOT the ones living with this pain!!! Peace to all. :) I wish you all less painful days, Peace, Tammie
I completely agree with Tammie about the doc who wants to amputate. DO NOT DO IT. I had my leg amputated due to the afffects and complications of RSD and although I felt great for about a month the RSD came back in the rest of my leg and on top of that pain I now have severe phantom pain. So even though i do not have my leg from below the knee down I still feel like its there and Im still in the same if not worse amount of pain, now due to the phantom pain and the RSD pain. It has not helped one bit. Some days are worse then when I did have my leg because of the phantom pain and now the rest of the leg pain from RSD. Please see another and another and another doctor before you even think about amputation. For a doctor to even mention amputation these days fully knowing what RSD is and what could happen and the effects of it, it just amazes me. Find a new doctor. your doctor is looking for the easy road and unfortunatly there is none when it comes to RSD. I had my surgery in 99, and it was from complications due to RSD but I still wonder what my life would be like today if it was never done. So again PLEASE see a second third and fourth opinion before even thinking about amputation. I wish you the best of luck and if you need to talk or need any kind of advice my email is : BooBoos24@aol.com.. Feel free anytime, good luck again and my prayers are with you all..
I didnt realize that htere are so many out there like me. I have been suffering in agonizing pain since I was 18yrs old. First they said it was fibromialgia and now they also say chronic pain syndrom. I have degenerative disk desease harniated disks and stenosis. on top of bad headaches and jopint pain. Ive been to rhumatalogists, nerologists, pshychologists, pain management centers the whole gambit of suposed PROS and they all either pump me with meds that dont even touch a thing or they say its due to my depression and do nothing. I havent been able to really work or do simple house hold chores for some time now. I do what I can when I can... but people dont understand. UG! Im so frustrated and lost....
My wife of 9 yeras was told yesterday she has Chronic Pancreatitis. Can anyone steer me to a Dr. Who can help her? We live in The Myrtle Beach area.
I feel for everyone of you out there. For the past 23 years I have been dealing with back pain. I am numb in my right thigh (thank god!) but my left leg and hip are excruciating. I have herniated 3 discs in the past, 1 of them twice, I have also broken my back about 25 years ago. I have undergone countless sessions of PT and facet point injections (never again!) I can not tolerate pain meds, my latest MRI shows dessication and bulging of 2 discs and they are making contact with my S1 nerve root sleeves. I do not want surgery. I am awaiting a consult with a nuro-guy. Does anyone have any advice for me? I am only 40 years old and have been told I have advanced arthritis in my back. I am newly married and even tho my husband has been 100 percent supportive, I am having a hard time dealing with not being able to work, or help with the re-model on the house we just bought. I also am the sole caregiver to my 76 year old father who lives with us. Any advice you guys could give me would be a blessing. Like some of you out there, I have begun wondering why do I keep going?
I am suffering from Arthritis of the spine, 2 severly ruptured disks, Siatica and Deg. disk desease. I am only 36. My quality of life is horrible. Nobody understands the pain I feel inside and out. They are tired of hearing it. Everything I do ends in "appointment". Shots, P. therapy, doctors, doctors doctors. Nothing works. I just stay doped up on medications that don't work, but are given freely without question. I will have surgery next month where they will remove 2 disks. Nothing is ever explained. I never get answers. I just cry everyday. I want to feel normal again. My husband and friends don't listen anymore. Tired of hearing that I hurt. I can't go anywhere, wear shoes that I like, cook dinner, etc... I just can't sit or stand long enough to do anything. I felt so alone until I read this blog. I pray for all of you. My question is.. who to turn to for understanding when everyone you know has shut down? How bad will my recovery be from surgery?
For the woman who was hit while riding her horse...have you tried massage therapy? I am a massage therapist and we are taught to help treat TMJD. If you havent tried it, it's worth a try:)
Hi Gals~ My name is Shannon and I am so heartbroken and angered by the common theme of disrespect you have all received from "physicians". I don't understand how doctors are allowed to practice without even an ounce of compassion! I was wondering if any of you have considered the option of one of those new(ish) medical pain management devises that are implanted in the spine to administer electronic pulses that (controlled by you) help to interrup the pain signals received by the brain. An acquaintance from church had one and she said she was able to stand upright for the first time in a LONG time, and, though it took her a brief period to get used to the tingly sensation, she loved the relief she received.
Any thoughts?
I pray you all find a doctor worth their title and, ultimately a solution (other than ending things permanently). Try to remember Job (in the Bible).
Love and Blessings to each and every one of you!
I had a 4 level cervical fusion i December 2007. Now I'm suffering with nerve pain down my right arm. The CT scan shows my spinal canal is fine, which is great but I'm in alot of pain. The dr. has me on Neurotin and Norco for the pain. He recently increased the milligrams in the Neurotin and it is hard for me to drive and function at work. My frien told me I qualify for total disability, does anyone know if this is true?
This is week 7 of constant headache, also wakes me up in the night with throbbing. I am going in 10/3 for MRI/MRV, looking for answers. CT Scan came back negative 3 weeks ago. Have tried some Migraine meds; Frova & Maxalt, with no relief. So far what has worked, or enough relief so I could work; was Fioricet. I admit some pain filled days I would use 8 tablets instead of recommended 6. But now Neuorologist wants me to start cutting back dosage. And my head is killing me! Can anyone suggest what may work well during this cut down process? My Dr. is out of town & his fill in just said "yeah it's going to hurt another week or so", kinda with attitude of just live with it! Comments PLEASE!
I have struggled with daily headaches for 22 years. They were triggered from moving from the dry western climate to the humid climate of the east and the stress of my third baby and a husband that was never home and not knowing anyone. Anyway... I started taking Topomax about 2 years ago and the day headaches are gone. The medication is a little difficult on the system for the first 3 months, but I got use to it. One good thing for me was that I lost about 30 pounds, which I needed to do. Hope this helps.
does anyone know,how long it takes to get Xanax out of your system?...my daughter just lost her job ,because of it!
I was diagnosed with R/A in 94. I developed spinal stenosisand it caused severe leg pain. I was in remission more or less for 3 years but recently the R/A came back with a vengeance. It has attacked my hans, wrists and forearms. The pain is incredible.
I no longer live in the states and so now proper pain meds are very hard to get in the country I now live in.
My rhuematologist in SF gave my vicodin and I can say that worked very well. I have recently learned of a source for this drug on the internet and now trying to get some for relief.
I have run across a few of the doc's who are determined to not give any narcatic type drugs in any case. I can only say I hope some day they will get the type of pain that I have to live with. O f course we all know that doc's can get any thing they want, for their own treatment.
I came to this site trying to find something about disc dessication, and although I didnt see anything written, I read through all of the postings.
I have had chronic intractable back pain since 2000 because I got run over by a car in 1999. And Im telling you all right now, the only way you're going to get what you need from your health care professionals, is to arrive at your appointments informed and prepared; have your questions ready and written down, be proactive in your approach, know what your rights are, don't be afraid to speak up or to challenge your physician, etc. Do some research, bring a friend or family member, so that you dont have to try to remember everything that is said to you. Please dont go to your appointments whining and carrying on about how nobody will listen to you. It decreases your credibility.
I know youre in pain. I have had the same experiences as most of you. But these doctors will be more responsive to you, if you're willing to take aome responsibility for, and part in your treatment. You must be strong and even though you have tremendous pain, you must force yourselves out of your beds, homes, indoors. Go outside and breathe the fresh air. Remember that today you might feel pain that you believe is the worst pain possible. But in one month or one year from now it might be ten times worse. You must find ways to live your life. And your doctors and health care teams will see this and respect you for it. And they will be more anxious to help you, because they will know that youre a force to be reckoned with. And they will want to help you because youre fierce and you love life.
And please, dont ever misuse your meds. Nobody will ever treat you again.
Cindy
qtnysgstI was assulted bt three men in my home almost two years ago. Since the attack where they kicked in my door punched me in the face sending my flying backward into a glass table then landing on the floor where I was repeatly kicked in the face by these three men wearing steel toed boots until I awoke almost an hour later to find myself bleeding and wondering around confused. Since then I have had migraines so bad they have lasted form days to weeks, votimiting, loosing eye sight, and all the other good stuff that goes along with a migraine. Now I have been suffering from back pain. my PCP has been perscribing my pain meds and telling me the migraines are a cause from the pain meds calling it a rebound effect. has anyone ever heard of this one? I have trouble getting my meds every month and have only over used them once when I had a migraine that lasted 12 days, so that 5mg of oxcy ever 6 hours was not cutting it so I choose to double up and take two which barely took off the edge. Now he up my script to 15 mg every 6 hours, yet only gave me enough to last 2 weeks. So because I took them as directed and that is why they only lasted 2 weeks, now he wants to take me off of my meds because he claimes it was as needed, which to me having the pain was as needed. So now has me down to 2 pills a day, then next month 1 pill a day? does this make any since? yet upped my morphine to 30mg twice a day and is fine with giving me the morphine. Now that I have been dianosed with Lumbar Facet Syndrome and fibromyalgia along with the migraines I have to suffer? I think these doctors sould walk a mile in our shoes and see how they would feel! I was an ER Nurse before this happened and now I am a couch potatoe because ANYTHING I try to do makes me suffer from moving. And at least with the meds I could bare the pain enough to get up. Now I am lost and scared as to what is going to happen to me. I am all alone and am gratefull to have found this site. I don't feel so alone anymore and hope someone can point me in any direction for help. innerbeauty924@yahoo.com even if you want to talk I could use some advice and comfort. God Bless you All that are suffering as I am. Yet keep the faith as it seems at times that is all we have!
Hey all, I am Kathy from Kansas. A 45 year old woman with the spine of a 70 year old. I'm scheduled to get an Anterior Cervical Corpectomy, Fusion - Instrumented (ACF) in December. Sorry for the doc talk by I can't even describe it in laymans terms.
Anyway, I have read all the posts, and man, can I relate!! It's nice to meet people going thru the same thing I am since very few in my circle even have an inkling of a clue. I've been dealing with the pain for 4 years. I've been accused of being a drug seeker even tho the doc had the MRI to prove I was in pain. TOO many people out there that are not in pain are abusing pain meds and it has ruined it for us that are really in pain. I just wanna scream some times! I don't have a support group other than a couple of friends and cousins, everyone in my family thinks I'm faking and that I should just drag my butt to work and deal with it. They have no idea. I'm on about 15 different meds, and I'd say 5 are for pain.
Here's what got my goat...my mother went to my doctor and talked to her and immediately she took me off the fentanyl patch and reduced lortab to 3 a day in a bottle of 30 that says MUST LAST 10 DAYS! That is so ridiculous I just can't believe it. So of course, my pain has skyrocketed. I had finally got used to the patch (50) and wasn't having all the side effects and she takes me off, then sends me to a rehab doctor that she says is a pain mgmg doctor. That's was fun. Tried to put me on the catapress patches so I wouldn't take anything. After the first day of wearing those I said NO WAY!
After numerous docs, neurosurgeons, pain mgmt docs, PT appts and tests, MRIs, Xrays, over a four year period, I finally, just yesterday, found a surgeon that will do surgery on my neck and tells me its 85% sure to relieve my neck, back and shoulder pain, but of course, there are all those risks involved, so time will tell.
I did see a post about if a doc will operate on you if you smoke don't do it, but I do smoke and I'm going to do it because he is my last chance....there is nothing else to do or nowhere else to go.
If he can even relieve just part of my pain I will be happy.
As you all know this chronic pain sucks and I've had it 24/7 for the last 4 years, so I'll try anything....I just about already have.
May we all be pain free!! :~))
God Bless all of you!
I have applied for a job after being laid off a year ago. I am also a chronic pain sufferer since a spinal fusion and disc removal to my C5 & 6 was done. I am prescribed Hydrocodone for chronic pain which doesn't seem to help any longer. That is besides the point, the potential new employer requires a mandatory drug test. I was told even if subscribed by a Physician this could be grounds for not hiring me. How long does it take to leave your system and what can I do to expediate this process ? Deperate and need to know by 10/26 at the latest. Thank you to anybody who can answer this question for me.
I have migraines since I was old enough to tell my parents that my head hurts. There is nothing I can add to the blogs exept a way to get short term relief. I have found that if you get a snorkle and submerg yourself (your head) completely underwater... it will ease the pain as long as you are submerged and for a short time after you are out. Sorry, I am on the same meds as everyone else, but before they had these medications, this was my only relief.
I feel for everyone who has posted here, I too am a chronic pain sufferer. I had suffered from severe migraines for amost seventeen years, had numbness in my hands and feet, I even had difficulty with swollowing. I went to over 37 doctors, and specialists. It wasn't until 1999 while my husband was staitioned in CA that I was finally given a diognoses. I have ACM (Arnold Chiari Malformation). Two weeks later I was in having brain surgery. Although the surgery relieved some of the symptoms, I still suffer from horrible migraines that can last up to 5 days long. The doctors as always are very reluctant about pain meds. I would love to have a day with out pain. Any ideas of relief for these debilitating headaches?
to all- trust your instincts and please do not let rude doctors steer you in the wrong direction or get you upset. i too suffer from constant migraines and neck and shoulder pain.
i have dealt with some absolutely horrific doctors who either misdiagnose because they can't figure out why i am in pain or are just blatantly rude and shoo me away b/c they can't help.
DO NOT give up hope, there ARE good doctors out there, although i know that seems hard to believe. i have dealt with some of the worst, but when you find a good one that listens, stick with them, but most of all, trust yourself.
good luck to all, you're all in my prayers
I am just finishing pain managment for a severe back injury. The smartest thing I did was to bring my wife. The Dr listened to me and my wife. Then gave me anything I needed. I was worried about the pain managment becasue it is all over the news and Drs are trying to protect themselves. Bring a friend that understands and is will to speak up and help.
interestingly we all suffer more than necessary due to those drug abusers, however we must go o n I have severe body osteo arth agrivated by being stupid when youngg (football wrestlig rock climbing fallong ect) and had a tripple in 2005 from which the sternum did not heal and has been clicking sence and of course other things , my point is I finnaly found a GP ,a psychiaritist, and a pain specialist that all listen and talk to each other thusly i get some realy wewird combinations but they work. from time to time we must change due to my body devloping less help and a slight tweak often helps. we some mind drugs soome patches, some antiinflamitories , and some narcotics. but the key is I have found a team that works together. I am quite lucky but I took the bear and told them this is how it is and got the cooperation thank goodness. good luck to all of you
my name is Kay,
i suffer from CP,fibro-something etc.now, i have been in this rut for some 10 years from 13(noticably anyway. I am in this battle with my pain (nerve, bone, muscle, even eyes) i had tried supplements, anti-inflamm., painkillers, psyhio, detox and still i cant find relieve. It fell like my body is against me and I'm trapped within myself with no where to run and worse no where I can seek refuge. I'm 23. I dont go out (its to painful to stand for any period of time, not very sexually active as I have found that to induces pain especially b/c of the restless, aching in my legs etc. Anyway, I don't want to belabour the point.(you see I've I'm a point not a person since my life is almost completely run by my affliction. Pain cant breathe therefore it is not life but it surely takes it.
23 trapped in my body any ideas to promote the slightest relieve
Anonymous,
Who ever wrote this,Keratoconus does NOT cause pain! It causes very poor eyesight as it progresses but no pain. I know because I have been living with it for 15 years, my mom has it, as does my sister. The only cure is corneal transplants and even that is not terribly painful.
That pain must be coming from another source.
8:44 PM
IS COMPLETELY UNFAIR. I HAVE KERTATOCONUS, I HAD THE TRASPLANT WHICH I MIGHT ADD WAS VERY PAINFUL FOLLOW BY LASER REFRACTIVE SURGERY WHICH AGAIN WAS UNBEARABLE PAIN. Now, I'm not sure where u get off telling people what they feel and with that tone. I ask you, if you are not seeing therefore straining your eyes, halos, blurred vision etc. do u not think that would cause pain? pain is what brought me to my discovery.the brain signals pain when things are going wrong usually. So i think it is absoluetly out of place for u to said what u have. As a matter of fact, u say it almost like it was a fact of life, WRONG! may u should consider if u belong on this site. Thats something typical of a doctor to say (because something doesn't usually cause symptoms or has typical symptoms does not mean another person will not react different. Consider if you will, allergies and other vulnerablities things that might not affect you.
Anonymous said
i have been suffering from achilles tendinitis for 9 months now can't seem to shake this even after numerious doctor visits. someone help me with some new ideas'
WOW is right i cannot believe there r so many of us out there. ( fellow pain sufferers)!!! But everything i have read is mostly right on the money. he DR'S out there r really redicules. I feel what every else here does. I have been a chronic pain sufferer since 1988. I have been umteen doctors , pain managemnet centers, injections and have been perscribed every kind of meds out here. I always had a difficult time geting he docs to perscribe anything even ultram and since all these drug stores robberies and peaple killing one another for leagle drugs and not just the illeagle ones. there are no longer very many simpithetic docs out here.I am from the Boston Mass. area and am currently seeking a simpathetic doc, if anytone know of one in my area could u please email me at semldm43@comcast.net.
Thanx for all of your blogs and osts , i now know i am not alone in my quest for chronic pain releif.
Sincerly,
SEM
I also suffer from migraines and have lost many days over the last 26 years because of that pain. Of course I reported this pain to many doctors and received a lot of advice--"migraines aren't a disease, just a symptom" "noone ever died of a migraine" "you just have to get used to the pain" "if medicine has disagreeable side effects, don't take any". I have been offered many suggestions as to what medicines must work. I tried many. All were expensive and ineffective. It has taught me an ibiding hatred of most doctors (I could give examples of horrible pediatricians too) and wouldn't consider a doctor unless I am very seriously ill and cannot do what I must. I did find relief when working with a doctors who actually believed in migraine and sent me to a headache clinic. My only desire now is that the doctors I went to during this search have the most debilitating, nauseating, long-lasting, protracted and just plain horrific and that I can say, "You just hav to get used to the pain".
I also suffer from migraines and have lost many days over the last 26 years because of that pain. Of course I reported this pain to many doctors and received a lot of advice--"migraines aren't a disease, just a symptom" "noone ever died of a migraine" "you just have to get used to the pain" "if medicine has disagreeable side effects, don't take any". I have been offered many suggestions as to what medicines must work. I tried many. All were expensive and ineffective. It has taught me an ibiding hatred of most doctors (I could give examples of horrible pediatricians too) and wouldn't consider a doctor unless I am very seriously ill and cannot do what I must. I did find relief when working with a doctors who actually believed in migraine and sent me to a headache clinic. My only desire now is that the doctors I went to during this search have the most debilitating, nauseating, long-lasting, protracted and just plain horrific and that I can say, "You just hav to get used to the pain".
I'm a 21-year-old college student who has been getting migraines since before I can remember - first vivid memory is at 6, formally diagnosed when I was 8 and finally able to put what exactly I was feeling into words. They were infrequent at the time, but by high school, they were severe every single day. At 16 I finally saw a neurologist, who started trying every preventative he could think of - finally, relief for two years. But then I had to get off that medication for a year, and all hell broke loose. We found out that I'm allergic to one medication: Imitrex! I took it and ended up not breathing, so unfortunately for me, all migraine-specific painkillers were out, leaving only the stronger, more dangerous medications. Even though I was put back on the preventative I'd used before, it didn't help. I was taking Percocet all the time - it didn't really take the pain away, just dulled it enough so I could sleep through it. Phenergan has been instrumental as well - it's an anti-nausea medication that causes drowsiness. Finally my neurologist got me in the Pain Management Program at another Kaiser center because I was out of school this semester, unable to leave the house, let alone live 9 hours way in a dorm going to classes. I'm currently on Methadone, two tablets at a time, 2-3 times daily. It hasn't cured me, but has made things much more manageable. I take Motrin 600/800 a lot (with food to help prevent bleeding) but it's worth it! The pain never leaves but I can get out of bed without being doubled over and screaming from the pain when I get back from the living room. I can even leave the house for short errands, or go to an appointment without ending up at the Urgent Care Kaiser center for IV treatment! Just leaving for Pain Management classes used to guarantee a bad migraine once home... not anymore! I still have Percocet on hand for breakthrough migraines but in the past week and a half, I had one day where I needed it. I used to have a severe migraine EVERY day, and I've had ONE in the past TWO WEEKS!!!!!!! It seems so hopeless sometimes and many doctors are CLUELESS and even insensitive... but keep at it... you'll find the right one, or one who cares so much about your well-being that he/she will find someone more qualified to assist you. My nightmare isn't over, but it's not as scary anymore. Yes, the pain is ALWAYS there, no matter what... but I can get out of bed. Next year I may return to school. I dream of the day I can hang out with friends all day or even go away for the weekend without having to pack a whole bag of medications, doctor's numbers, supplies (water, snacks, etc.) and I long for the day I can make plans with friends and be confident I won't have to back out. But it's looking up. Just wanted to encourage everyone not to give up... I wanted to, and did a few times, but with a loving & supportive family, a mom who will take me for IV treaments at 2am, and understanding friends, and with an entire team of doctors who are trying their best to help, I'm slowly getting my life back. I'm only 21 and this has been my life ever since I can remember... it's amazing to finally feel like things are changing. Keep fighting, all.
I'm a 21-year-old college student who has been getting migraines since before I can remember - first vivid memory is at 6, formally diagnosed when I was 8 and finally able to put what exactly I was feeling into words. They were infrequent at the time, but by high school, they were severe every single day. At 16 I finally saw a neurologist, who started trying every preventative he could think of - finally, relief for two years. But then I had to get off that medication for a year, and all hell broke loose. We found out that I'm allergic to one medication: Imitrex! I took it and ended up not breathing, so unfortunately for me, all migraine-specific painkillers were out, leaving only the stronger, more dangerous medications. Even though I was put back on the preventative I'd used before, it didn't help. I was taking Percocet all the time - it didn't really take the pain away, just dulled it enough so I could sleep through it. Phenergan has been instrumental as well - it's an anti-nausea medication that causes drowsiness. Finally my neurologist got me in the Pain Management Program at another Kaiser center because I was out of school this semester, unable to leave the house, let alone live 9 hours way in a dorm going to classes. I'm currently on Methadone, two tablets at a time, 2-3 times daily. It hasn't cured me, but has made things much more manageable. I take Motrin 600/800 a lot (with food to help prevent bleeding) but it's worth it! The pain never leaves but I can get out of bed without being doubled over and screaming from the pain when I get back from the living room. I can even leave the house for short errands, or go to an appointment without ending up at the Urgent Care Kaiser center for IV treatment! Just leaving for Pain Management classes used to guarantee a bad migraine once home... not anymore! I still have Percocet on hand for breakthrough migraines but in the past week and a half, I had one day where I needed it. I used to have a severe migraine EVERY day, and I've had ONE in the past TWO WEEKS!!!!!!! It seems so hopeless sometimes and many doctors are CLUELESS and even insensitive... but keep at it... you'll find the right one, or one who cares so much about your well-being that he/she will find someone more qualified to assist you. My nightmare isn't over, but it's not as scary anymore. Yes, the pain is ALWAYS there, no matter what... but I can get out of bed. Next year I may return to school. I dream of the day I can hang out with friends all day or even go away for the weekend without having to pack a whole bag of medications, doctor's numbers, supplies (water, snacks, etc.) and I long for the day I can make plans with friends and be confident I won't have to back out. But it's looking up. Just wanted to encourage everyone not to give up... I wanted to, and did a few times, but with a loving & supportive family, a mom who will take me for IV treaments at 2am, and understanding friends, and with an entire team of doctors who are trying their best to help, I'm slowly getting my life back. I'm only 21 and this has been my life ever since I can remember... it's amazing to finally feel like things are changing. Keep fighting, all.
I've had migraines with varying frequency since I hit puberty at 11. The pain from sound, smell, light, etc has always been nauseating.
I used Midrin for many years with varying success. Tried Zomig -- no help at all.
Nowadays, I have a couple of tricks up my sleeve, that I'll share:
Somebody told me to try topical analgesics. I apply it everywhere I have pain, and where there are sinuses: forehead, temples, behind ears, along back of neck. This is not a *fix* for a full-fledged migraine, but I've had success with heading off minor tension headaches before they could escalate. And I really like that I can still take serious drugs, without having to wait like one is supposed to after taking, oh, Excedrin. Ones that contain "Methyl Salicylate" (aspirin) are more effective.
I'm lucky enough to have a good, pro-active doctor. When the migraines started occurring every 7-10 days, she had me try a very mild dose Propranolol - high blood pressure meds. My bp was only 135/85. I started with 10 or 20 mg, a very low dose. We've increased it slightly. The headaches stopped. Here's what I think: My family is prone to low blood pressure, so 135/85 was equivalent of 150/90 for someone else. I had (have) gained weight -- which is definitely causing the higher blood pressure. So for me, those particular headaches were being caused by high(er) blood pressure than my body is willing to tolerate.
I have the impression that my body has established "migraining" as a default response to a number of things: fatigue, stress, etc.
Anonymous said...
I suffer from migraines. I am supposed to take Imitrex for them. However, I am now unemployed and have no health insurance. I have applied for public assistance and got denied. I currently take Tylenol for them. However, I don't experience any dulling of pain or relief. I am Allergic to Aspirin. So, it makes it difficult to find an OTC med that might work. Any ideas
Valium. It's cheap, and it controls my migrains fairly well. Good luck !
I am 47 yr od female with migraines since 14, fibromyalgia diagnosed in 1994, ruptured disc c4-c5. Now we add peripheral neuropathy. I have tried all the migraine meds, the only one that works for me is Relpax. I take Toradol and Valium for the fibro, it doesn't kill the pain like Vioxx did, but it does take the edge off. I take Lyrica at night for the neuropathy pain, at least I get a couple hours of sleep now. My biggest gripe is insurance, we lost our company coverage after a factory closure so now I have over priced, under-covered insurance, I thought the HIPPA act was supposed to help us keep decent coverage if you lost coverage, but with pre-existing conditions we are all screwed!! My PCP does what he can to keep me in sample meds but some I have to have filled at the pharmacy and my ins. doesn't pay for %*^$!! The insurance companies decide who gets coverage, what they get and how much they can suck out of us. The Drs are afraid of the government and the insurance companies. Just to be honest, medical marijuana is a HUGE help for people with chronic pain, but the govt would rather drug us up with opiates that make us all addicts then lump us with street addicts and junkies! We need to really speak up to the Drs, and the officials we elect to get this mess straightened up. I am in pain all day every day, but as most of us can attest to, unless you've been there, you don't know and pain is relative. I gave birth 3 times, with a total of 50 hours of labor and at least then there was light at the end of the tunnel! One second, one minute, one hour, one day at a time!
anonymous said...
I am new to the Internet world and I saw recently an ad that said you can purchase prescriptions over the internet. I am not sure if this is safe or how it works. If anyone has any info. I would really appriciate it I would hate to get ripped off. As it is I have no medical insurance and don't qualify for medical coupons so Doctor visits are expensive. Is it a good to purchase prescriptions over the internet? Any info would be so greatly appricated.
Anonymous,
It's not safe. Here is a recent article about a recent FDA warning on fake Internet drugs. You can read more about why buying prescriptions online is a bad idea here.
The first article I linked has a list of 24 sites to absolutely avoid. Even though doctors' visits are expensive, it's your life that you're protecting by seeing a qualified professional and getting an accurate diagnosis before taking any medication.
Take care!
anonymous said...
I really appriciate your response. It is so easy to get sucked in to the Internet. I do realize that most of it is not real. It is a comforting feeling to know that you can actually find someone out there to give you good healthy advice. Thank you again and God bless!!!
I too suffer from RSD. I have it in the right foot so I know how painful it is. I can not wear shoes or have anything touch my foot either. Please do not have surgery, it will increase the pain. I have been living with this since 1996. I know it is hard but you just need to get through one day at a time.
Anonymous who needs imitrex with no health insurance. First, there is always hope. Choices - I AM NOT A DOCTOR, THIS IS JUST MY EXPERIENCE.
1.) Send an email to the drug company that makes Imitrex and tell them your situation. They may send you coupons to get it for free. Drug companies are under alot of pressure right now and one Imitrex pill used to cost $10. Your doctor still has to prescribe it.
2.) Go to Montel Williams site and get the info for that PPA. They can help.
3.) Also, you'll never get another job if you are stressed with Migraines. Do not feel guilty for one minute.
4.) Go to your family doctor (neurologist is expensive), I think Tylenol with codiene is pretty cheap. Not great long term but until you get another job maybe. Ask the doc.
5.) A preventative that worked great for me is Elevil. I can't take alot of the others. It's old and cheap, and helps with stress too. Again the doctor knows what is best for you.
Good Luck, I'll say a prayer tonight for ya.
anonymous states,
I have just read all the blogs, and I truly feel sorry for you all, I have to write this to somehow engourage everyone not to give up hope. I too suffer chronic pain and did all the x-rays, nerve blocks and worthless medicines for years. I finally told my gp who had been my family doc for years I had enough. Like you all, I had enough of being embarressed, made fun of by doctors and surgeons who told me there was nothing in the x-rays to cause me "pain", even though after my car accident, I was told I had permanately torn all the ligaments in my neck, and would be in pain all of my life. He referred me to yet another neurosurgeon, who amazingly said I should have been operated on years ago, now I had permanant nerve damage to C-5, 6,7. Been years ago now after being cut on by him, finally, my hand at least was not numb anymore, but pain is still there in my neck. So surgery that I had begged for, and if HAD been done right after my accident, MIGHT have relieved a lot of my pain, I just don't know. I am now divorced, raised my family alone, and I DO work, you cannot giveup your life. I have a deep faith in God thru all of it, and yes, I sound this way because I finally found a doctor to prescribe the right amount of pain meds, which is the only and best thing in my case to help me lead a normal, functioning life. He is an absolute saint! So compassionette and his nurse also. I know that God answered my prayers finally after suffering for so many years. I notice a lot of you do not know which states have the right kind of laws which let a few GOOd, caring docs dispence drugs and moniter their patients. My doc, who is a gp, but a Chronic Pain Management Doctor dispences pain meds. and DOES moniter me on a 1-2 month basis now. At first, it was every week. I will tell you Oregon must have the right laws for this, It is where I live and I thank the Lord every day I live here, although it is a liberal, Democrat state. HAHA. Which I am far from. I will pray for all of you that you will find the kind of kind, caring doctor I have. He is one of two doctors who do this in my town. He is younger and I pray he will be around a long time to help me until the Lord comes again. Don't give up, help is out there, It took me years of suffering to feel like a normal person again. Don't do anything rash, even though you feel like it sometimes, been there too, your life and family are too precious to throw away. When you do find the right doc, you can look back and be proud of what you endured and accomplished. I pray that you all find the relief you need.
I was diagnosed with periferal neurapathy about 6 years ago..since then I have been on a variety of pain medications...none of them satisfactory. I don't like to get into the narcotic thing..Right now 600 mg of neurontin twice a day and cymbalta 60 mg once a day controls the pain...but I don't like the way they make my head feel...feel light headed and "spacy" Balance bad...I am hoping for some alternative that isn't so brain altering......
To the migrain sufferer, I have been to the Headache center in Houston, Texas and they provide a research. They give you free samples of everything you can imagine to help your migraines while you are in the study. They pay you between 500.00-2,000.00 to participate and give you the medicines for free. You would just have to look up on internet, call them and see if they have a migraine study you can participate in asap. GOOD LUCK I know whta you go through.
The guy with leg pain into his feet is Neuropathy. That is where the nerves are dying out, you will have dibilitating pain and eventually move to you hands. The best medication for that is LYRICA and a strong chronic pain killer. I know a family member who has that. I am sorry, I know what you go throu also, I see it everyday. Go to a good doctor who will not charge an arm and a leg to see you and ask him about Neuropathy. This website, WEB MD has all the info you need also. GOOD LUCK
hydrocodone last 3 days in your system, Thats a FACT
to snowbuster86. You r4eally need to be on methadone or morphine with some adjunct meds. I hear that RSD can spread if the pain isn't treted properly. I have phantom pain-above knee amputee. 68 operations,23 broken bones,over 1400 days in the hospital. I could never of imagined that phantom pain could be so excrutiating and life draining.when my pain is under control and treated properly-i can live my life and look forward to things but when its a 10 the time just crawls. why is it that some with similar issues are prescribed such different levels of meds. one will be on adequte doses and the doc will be willing to help and others are on like practically sugar pills and the docs treat ya like swamp scum. So unfair that we are analyzed,judged, and picked apart in every aspect of our lives because we have chronic pain. I could go on. CP is so misunderstood and terribly undertreated.
Just over 3 years Ago, I was struck by fallen Candles that hit my ankle/ankle bone & caused RSD which later spread to upper extremity. My ankle,hand & forearm swell, turn bluish color & with extreme burning, throbbing,stabbing,pulsating pain. Each morning I wake my hand/foot is swollen 2-3times the size & so painful I cant make a fist,sometimes takes a while to be able to move fingers so swollen,can't wear my wedding ring, a long sleeve tight shirt,touch & foot same stabbing, burning,pulsating,throbbing pain, have sheets touch,put sock ,shoe on, Even writing has become difficult,typing here hand in extreme pain & swelling. There are many days I'm in bed for days at a time cause the pain is so bad, I just can't take the pain level & all the meds in the world don't help. I was lucky to find DR's who reconized the disease & did come across one or 2 who were clueless & looked at you as if it was "all in my head" those you run fast from, along with any Dr who tells you to amputate w/ RSD it's the worst thing to do. Anyone who has RSD needs to find a good Pain Management Dr. who will listen to all complaints & talk through all options good or bad. My pain Management Dr. tried so many pain medications,Some such as Lyrica & Cymbalta are suppose to be good for RSD, ( unfortunately my body couldnt handle it without vomitting) He keeps me updated on any & all new medications,available treatments..Though my life has been taken away by RSD, at least when I go to my Dr. I'm confident he's there to HELP & treats me like a human being. I also Tried injections,Physical Therapy which was severely painful..I couldn't continue. The"Trial Stimulator" by Metronics?.. the Stimulator was unbearable, I couldnt proceed with the permanent procedure. Tried on 2 different occassions, I think the only thing left was a IV PUMP but Dr. & I agree too many health risks, Right now my pain is being controlled at some point but NO- where to the point where I have a normal life by Duragesic patches,oxycotin, RSD IS NO JOKE ESPECIALLY WHEN YOU'RE THE PERSON LIVING WITH IT. I wish there were more Support Groups avail. & For our spouses without their love & understanding I don't know where we'd be, At the same time they feel alone due to a simple touch hurts so bad, it's frustrating. I feel bad for families with kids, like my daughter basically had to help take care of me, leaving me crying each night... wishing I could be the mom I used to be & have fun with her, not laying in bed each day with swollen foot/hand/arm in extreme pain where I can't get up due to the massive pain. I Hope the New Year is better for all of us who suffer from RSD & they find something that really works instead of relying on so much medication. WE REALLY NEED A CURE!
Just me,
I have had many surgeries, open heart, you name it. I have been dealing with back pain for a long time. Went to Main Managment classes done it all. I have found my best help with my Chiropractor. I get so I can hardly make it into her office but after a couple visits I am up and able to walk. I have tried all the "pain Meds" make me sick. She has been the best thing to happen in my life. I will be better than boom something goes out again, I know I have two bad discs, spinal stenois but with her help I have been able to keep on going. I love to garden and get where I just can't..make an appointment and soon I am back at it. Don't rule this out...please...if not good results with one try a different one. I am in alot of pain now but this week I will place a call. She knows when I call I am bad but with some work and maybe a second visit I am able to do things. Please don't rule out trying a Chiropractor. A Dr. will not tell you to see one...but believe me they can help, took my husband from laying on the ground in pain to being back to normal. Keep on tryin....really has helped me thru some really, really bad pain. My cousin is in pain all the time also and loves to garden...she also goes to a Chiropractor..not the same one but has good luck with hers also. Try....try one...it's better than being in pain, feeling lousy from pills, laying around hurting and wishing you were dead...please it has helped so much give it a try.
I have been suffering from chronic pain for most of my life. At the age of 28 I was diagnosed with fibromyalgia and was told that after reviewing my entire medical record I'd been suffering with it since the age of 12. I know what it feels like to be treated like theres nothing wrong with me. At the age of 35 I had an accident at work(I'm a nurse) and now also have a chronic thorasic sprain. After a few years the "workers comp" nerds decided i had to go to a pain clinic that was 3 and 1/2 hours away. Well I took the day off trying to be positive, maybe this would help. When the DR. entered the room the first words out of his mouth were "If you've come for narcotics you're not getting any". I told him that I didn't want any narcotics, I just wanted some alternatives for my pain, he decided he couldn't help me.Guess i was too mouthy. This was in 2000. Just after 9/11/2001 I saw this DR. on the news as one of the people pictured that the FBI wanted to talk to in connection with the bombings. I notified the FBI and was assured that I wasn't the only one who had recognised him. I didn't like him from the moment he opened his mouth, FOLLOW YOUR INSTINCTS, TRY SOMETHING ALTERNATIVE, GO TO YOUR LOCAL HEALTH FOOD STORE, ADD CHIROPRACTIC TO THE TREATMENT YOU'RE ALREADY GETTING. JUST DON't GIVE UP. I'm 45 now, I have chronic pain daily, I take take prescribed meds, herbal supplements, "try" to exercise and eat right and am currently looking for work as I've been laid off after 23 years at the same job.
Rambling in Southeast Ohio
to the woman whose daughter lost her jo due to Xanax. I too am having difficulty at work because of my health problems. I take Ultram for chronic SI joint pain and have for years. It started when I was in the military. They finally medically discharged me because they couldn't find the cause or cure me. I am an EMT now, trying to help others, but I was told that I am not allowed to take my meds while on duty. I won't be able to function! Last year I had a hard time finding a DR. that would look at me and presribe meds, and the pain got so bad at times I wanted to throw in the towel. I began comtemplating ways to end it all. Now I am functional, I exercise and can contribute to society instead of laying in bed all day. Can they really fire me for being on meds?
Dear anonymous: I too suffer from horrible RSD. I have had it for four years, have been through out patient ketamine for three, two ICU ketamine infusions and about 12-14 hospitalizations per year. i had the stimulator. It seemed to work great during the 5 day trial. The problem was after a month it kept antagonizing the RSD and finally made it so bad that they had to remove it in surgery, after with I went through my second ICU ketamine treatment. Who is your doctor? I really know a lot about this illness. lrm196
I too was diagnosed with RSD in 1999,@ the time I was 25 yrs.old. I had been in a car accident involved with a domestic dispute with my children's father. My right foot & ankle was caught in the passengers side door while the car was still in motion. I had immediate surgery done on my foot & ankle & metal fixation was placed in my right leg (plates,screws) July of 1999 I was diagnosed with this miserable disease RSD.I started experiencing so much pain in my right leg, foot, ankle area so much & I started experiencing ulcers on my injury site & on top of my right foot & bottom. I started seeing a plastic surgeon to get the ulcers debrided twice a week. My orthopaedist @ the time advised for me to have the fixation removed thinking that I may have had an allergic reaction to the metal causing my ulcers. Well, that was proven untrue....I had yet 2 more ulcers developing @ days after the fixation removal.I have had to be assisted by the use of my wheelchair, walker & cane since my injury;I couldn't go back to work in either professions I had experience with (nursing & retail management) because they required me to stand,wawlk & use of my legs, which could no longer do. I hired a lawyer so that I could receive Social Security income(I won the case). I went through physical therapy for my right leg, but it was prohibited due to how my right foot& ankle was injured,left my foot in the dislocated position, therefore made it difficult for me to perform the exercises. I began to feel the symtoms of RSD in my left leg as well & I started having severe pain in my lower spine. I was informed that I had a degenerative bone disease in my lower lumbar.My neurologist @ the time advised that I have a spinal nerve blockage, so I did, except for it didn't block any pain, my pain only seemed to get worse. I told my doctor that I was still experiencing pain, so she advised that usually you have to do a repeat spinal blockage to help. I wasn't informed this though going into my first spinal blockage, so I didn't have it done, mainly because it didn't help the first time, I wouldn't put myself through it again. I was prescribed to take Neurontin(350mg.) when I was diagnosed with RSD to control my central nervous system, since @ the time I was told there was no cure or specific medication for this condition due to little research on RSD, therewas little known about it. I also was on several arthritic meds for joint pain, due to my post-operative arthritis I suffered due to my injury, I also was on some depression medicine(Zoloft) to balance my nerves.In 2003, I went into a comatose state that I was in for about 30 days. My entire system was shut down & I wasn't expected to live, but God's grace proved otherwise. I was referred a new neurologist durinng this ordeal. I started visiting him thereafter. After my coma I started experiencing the same pain in shoulder, arms & hands. I told my neurologist & he advised that I wear some wrist splints & pillows @ bedtime(it didn't help). I was prescribed Amitriptyline(25mg.) I was still experiencing this excruciatng pain & numbness as well. He finally performed an EMG of my entire arms & advised me to see a hand surgeon. I was told that I had signs of Carpal Tunnel & that I needed surgery to correct it. I haven't had surgery as of today yet, due to my experiencing some chest pain & breathing problems for aBout 7months now, surgery had been called off by my regular private physician. Recently, I visited my neurologist due to me still having pain, burning, tingling & numbness in not just my right arms, but my left as well. He told that he didn't think that I had RSD & that there was no such thing & he didn't know where I got that from that I had it. I told him first of all I was tested in 1999 with an EMG ordered by my then neurologist & I was diagnosed with it since then. I always have had an open conversation about my health with my now neurologist, since I was in the hospital in 2003, I thought that was why he was referred to treat me after coming out of my coma. Everything on my medical history should have been in my records,plus when I first started visiting him after my dismissal from the hospital,I filled out a medical history form. He also, continued me on Neurontin & not once did he ever tell me that he thought that I didn't have RSD & that it nver existed. I am very upset about this because I know that he is wrong & he isn't even the neurologist who went through this ordeal with me until it was confirmed that I had RSD. I think that I should discontinue visiting him & start back visiting my previous neurologists that diagnosed me. I really could use some professional advice. Please email me back @ maejane2@netzero.com
Mary in Macon,GA
About 6 months ago my husband fell to his knees with severe lower back pain ( he was movng a very heavy object). He tried to "tough it out" but after 2 weeks of seeing him in so much pain, i convinced him to seek medical attention. He was diagnosed with a herniated and a bulging disk. He followed the recommendations of the PCP to no avail. The PCP referred him to a nuerologist that put him on a regiment of PT and shots, which did not help to aleviate any of the pain. (background on the neurologist in next sentence.)
The neurologist that he was seeing, on the first appt. seemed unaffected by my husbands expressions for pain relief. (the dr. was text-messaging while my husband was trying to tell him about his back! So my husband made the comment that he would stop speaking until the dr. was done texting!!!) Besides the "regular" symptoms of his condition, severe back pain, numbness in his left leg and tingling, for the last week or so he has been experiencing serious restlessness at night. He says that he is having hot-flashes and adrenaline rushes, and of course sleeplessness. He has muscle relaxers, hydrocodone and 800 mg. ibprofen that does not help. My question is, has anyone experienced the symptoms that i just mentioned? Could it be from the chemical(s) (adreniline?) that the body releases to fight pain? Could it be that his herniated and bulging disc may be partially "cutting off" signals?
My questions may seem juvenile, but I hope that maybe there is some truth to them. So like many of you, he is very frustrated with dr.'s.
And my heart goes out to everyone that has posted their experiences here. May you find a dr that will listen with his/her heart and and use their knowledge that the Lord has given them to help you.
I have MS (for those who don't know it is multiple sclerosis) and I have severe pain all down my back and legs. I have been to a doctor and he said that most people don't have pain but there are people who do have pain. I asked him what I can do about it, he pretty much told me that I will have to take take pain medications. I have tried methadone and it was a life saver!! I don't know what I would do without it. I take at least 4 a day, and I would not be able to get through the day without it. I have tried things like Darvocet and Percocet, but it was like I was taking almost 80 a week because they would work for about 30 minutes and then hey would stop. If there are any other medications that someone thinks that would help then just let me know, and I will be willing to try anything. Thank you so much. I just found out that I have MS and that I had a horrible attack. It was so severe that I was hospitalized for 6 days.
Heather
Hi everyone, I feel your pain. I have never been able to find a dr who could help me. I was in a car accident, shattered my hip, ruptured spleen, neck and back troubles. I had no insurance,and smoked pot when I was a teenager. I guess that gives doctors a right to not prescribe pain meds. I caught pneumonia in the hospital, after having my abdomen opened for splenectemy. Coughing every 20 seconds with muscles cut in half is torture! They sent me home with 25 percocet, and NO REFILLS!!!! Is that even legal. I cried for 2 weeks and my mom even tried to get me drugs on the street(she HATES drugs)just to help me cope. Now I need a hip replacement, back is in shambles, and I take 300mg of methadone daily, due to my addiction to dilaudid from another accident. My clinic cannot prescribe me methadone for pain maintainance, yet no doctor will give me meds due to my methadone. I hurt very badly now, and can only sleep 2 or 3 hours until my hip and back hurts. Is there places that will prescribe fentanyl to methadone patients who take methadone as opioid maintainance, not pain management. Please let me know. The methadone blocks any weaker narcotics, and I cannot afford better health care. All doctors tell me that the methadone makes pain worse, but won't do anything about it. Please tell me I'm not alone in this. Give feedback.
I to suffer from chronic pain due to headaches and injuries to my neck and back.Chronic pain and headaches are life altering and a daily battle.My heart goes out to all on this site and every one suffering in pain.To frustrated in wisconscin,if you were hurt at work I would talk to a lawyer.To the person asking about total disability,it is a long process and I would suggest you also talk to a lawyer.I don't know anyone who was able to get disability without a lawyer.I do know that once you file it takes a while and if you are able to get disability they have pay you starting with the day you file,at least in Pa.,so the sooner you file the better if you are eligible. To the person who's daughter lost her job because of xanax.I don't know if a company can legslly fire a person for taking prescription drugs,there are millions of working people taking prescription drugs.I would suggest to anyone who is going to be out of work for an extended period of time to contact a lawyer.There is nothing wrong with protecting your rights and yourself.
.
Drs should be tortured when they say that we have no pain. I feel that is what is happening to us every day, my family must take care of me. Without my income we are in danger of looseing our house. Our son sometimes resents my RSD because I can't be the mother to him as I was to his sister. My husband works to jobs and goes to school to make a better life for us. My dr was not good he spent maybe 30 seconds with me each visit. and never called back when you called. I am still looking for a new pain doctor. You all are in my prayers
Hello to each of you and thank you for sharing what you have been through. I have felt and sometimes still have the chronic, severe pain that you describe. I would like to tell you a bit about myself and share some experiences and ideas and if anyone out their benefits then I am happy. First, I read all of the posts and plan to address many different areas.
I am a Registered Nurse who suffered with constant headaches which very frequently turned into severe migraines. This began about the time I started menstruating around the age of nine and continued to age 35 before I learned enough to decrease the frequency and severity enough that I could go to nursing school. It should also be said that age and the accompanying natural decline in estrogen no doubt played a role in this decrease in headaches.
So, at 35, I went to nursing school as someone who had been dealing with the medical community for many years and often treated badly as so many of you have experienced. One of the worst times--I was in the ER and had been vomiting for hours so had reached the point that I was only throwing up bile every 20 minutes or so, unable to sit up from the weakness brought on by the severe dehydration and in agonizing pain that increased with sound and light and was seen by a doctor who after asking me a few questions in a most condescending manner told me to smile. I was so angry with what I thought was mockery that I said to him "I have nothing to smile about". Uh Oh! The quality of my treatment deteriorated further. I can't remember all of the details but I remember the feeling of being treated as though I had no value. Years later as a nursing student I learned that the ability to smile is part of a neurological exam. Now, why in the world could this ER doc not have taken a moment to explain that to me? It would have likely changed the course of that ER visit. So, I became a nurse and for the first time in my life felt that I belonged somewhere. I was and am an excellent nurse and go to bat for my patients on any needs but really go the extra mile when I see a patient in pain who is not being treated properly. You can not imagine the stories I could tell. Of course you don't have to because it sounds like most of you have experienced them.
Fast forward to age 51, now I am the charge nurse on the 7p-7a shift on an Oncology (cancer) Med-Surg floor. On a particularly busy night I am helping to move a patient when I rupture two discs at L4-L5 and L5 to S1 (lowest part of the back). That happened 13 months ago and I won't go into all of the details (this is not a book) but the injury has lead to my developing RSD in my left leg. It started as what appeared to be a fading bruise that was too tender to touch and has currently advanced to involve about 60% of my lower leg which is discolored and atrophying and, of course, extremely painful.
As many of you may know it often takes some time to diagnose RSD because it does initially look like an infection with the site becoming red, warm and swollen. Nonetheless, because I was very proactive I was initially diagnosed by my 5th doctors visit
(3 office visits and 2 ER visits). That really isn't bad when you consider that the research shows that on average a patient will have 30 doctors visits before getting the correct diagnosis. The moment the doc uttered the words RSD to me I went home and started the research. It is fair to say that in the area where I live I am now the RSD expert! You can well imagine the issues I have dealt with as this is a Workers Compensation case. It is interesting to note that the hospital I work for has been totally supportive but I have at times had to push the WC adjustor. I really don't know what has been worse--the migraines or RSD but now that you know my "credentials" I would like to share some things that might help. I'll start with migraines and then talk about RSD.
Migraines just steal away your life with the debilitating pain or sleep from the meds or the hangover from the meds or (and to add insult to injury) the rebound headache from the meds. Anyway, I am going to offer you the steps I would tell anyone and I hope you find some benefit:
1. Start a diary. Include in your diary each day your blood pressure, your food (be very specific here) and alcohol intake, the weather, any travel and what the change in elevation was. It is the only way you will discover your triggers. If you get a H/A then be sure to write down what was happening in your life--were there any particular stressors. What odors had you been exposed to. Did you have a change in your sleep pattern? Now, I know this sounds like a lot of work and it may well be that you don't feel like writing--then get you a little tape recorder and record the information. Also include what you did for yourself including the time and whether or not you received any degree of relief. Make sure you date and time this so that it can be dtermined if there is any pattern. Now, when you go to the doctor take this diary (a copy) with you that you can give him or her to be placed in your chart. What you will ultimately get from this is a list of headache triggers and you will know what you can do proactively to either prevent the headaches or diminish their severity. You have probably heard the common triggers but we are all individuals and you must identify your triggers. For instance, some of my triggers include: ODORS (while I hated giving up my favorite perfume that I only wore on special occasions, I was delighted to give up the headache that came with every celebration and I wouldn't consider going through the perfume department of a store or into one of the perfume shops (shopping for me stopped being a source of pain). Don't worry you will likely discover some perfume that does not bother you. A few years later I found two perfumes that I love that don't give me a problem and my husband found a cologne that also does not give me a problem. You may even find that you have friends or family members that having been triggering your headaches with their perfumes. I don't know how it will go for you but when I sat down with them and explained how much I loved them but could not tolerate their perfume they stopped wearing it around me. Now that is real support! CHINESE FOOD--well really it is not the food but the additive MSG--all you have to do is ask them to leave it out and be sure to mention that you are allergic to the MSG--they will leave it out! INADEQUATE or POOR SLEEP habits--just get on a schedule and stick to it--you will be so surprised at the decrease in pain. FLYING--I do love to travel when I can but I know that after each flight I will go through a headache so I have to be proactive and take a pain med first, try to stick to my normal sleep/wake cycle, drink plenty of water. Ahh water! You will be surprised to find that keeping yourself properly hydrated with water will cut down on your pain while soft drinks and caffiene will increase your headaches. If you can really limit your intake of caffiene then you will be able to use caffiene as part of an effective first line treatment when you feel a headache starting. I find that the product at Wal Mart called headache relief can be very effective because it is a combination of tylenol and caffiene. It should be noted though that caffiene withdrawal can be brutal so if you know yourself to be a caffiene addict you must gradually take it out of your diet. To do this you will have to read lables because caffeine, like MSG, is hiding in so many products. Now is a good place to make the point that you must start reading labels. PROCESSED FOODS--I discovered that food preservatives cause me headaches so while my fridge and freezer are generally overflowing my cabinets are bare. I know one person who when taken off of all processed foods stopped having migraines all together! Just imagine that!
Now, let me say a few words (I'm not generally know for being succinct) about RSD.
The first line of treatment is--non-steroidal antiinflammatory meds (NSAIDS). The research says Ketoprofen (which is no longer available over the counter) is the drug of choice but my doc chose Celebrex with my consent. This is coupled with the daily application of a Lidoderm patch and Percocet for breakthrough pain. You will think the Lidoderm patch is the best thing since sliced bread. I cannot believe what a difference itmade for me--simply put--it has given me my life back.
The other recommendations I have for those of you dealing with that devil-RSD:
1. Go to www.rsdfoundation.org and join. The fee is nominal and they will help you. The first thing I asked for was a list of RSD specialists in my area and they sent it to me. That alone was worth the price of joining. I have also gone to the organization with questions and to obtain clarifications.
2. Go to www.medifocus.com and order the MediFocus Guide to Reflex Sympathetic Dystrophy and purchase the book. I suggest you pay the extra five dollars and get the printed version as well as the online version. That way you can share this wonderful resource with your family, friends and most importantly your doctor.
3. If there is no support group in your area then start one. Just feeling empowered will make a difference.
4. You would be amazed at how effective self-hypnosis is so learn it and use it!
5. You must have exercise and the best is water therapy. I was amazed to find out how much exercise I could get in a warm pool.
I wish all of you pain free days so you can again experience the joys of living. I hope this has been helpful. I want to conclude by asking you the following (which I ask any patient I care for who is not taking an active role in their care)
Think about this: The average person spends considerably more time researching what car to buy than what doctor to see.
Would you consider handing over your car and car keys to a mechanic and give him carte blanche to do anything he wants and charge anything he wants without question? Would you open the door to your house and let in a plumber or electrician with the understanding that they could do anything they wanted. strictly at their convenience, charge whatever they wanted and that regardless you would pay the bill. Well, is that not exactly what we are doing with our most precious commodity--our health and well-being.
Have you ever heard the joke "What do you call the doctor who graduated last in his class?". Give up? Doctor So, if the one you have is not helping you it is time to fire them and find somone who will. Pain is now considered the 5th vital sign and doctors are obligated to treat it, otherwise they can be held legally liable. As for the individual whose doctor wants to amputate. I beg you run don't walk away from this quack! Amputation for RSD has long been stopped because it not only did not help the patient but actually caused and increase in problems, pain and the RSD flaring up at an alternate site. The only time amputation is done on a patient with RSD is when the patient develops ulcers that become gangrenous. It is done because the gangrene would otherwise kill the patient.
My best to you all. And for the record I live in California and am so thankful as had this happened to me in Georgia (my native state) it would have been a nightmare.
Please know that I wrote this as a fellow sufferer and while I hope it helps you it should not be considered as treatment and you should seek out a doctor who will help you by using the latest available research.
Hi again. I forgot to add that one of the first interventions that helps most migraine sufferers is to apply an ice pack to the side of the head that is hurting.
Also, I will soon have my own site but currently if you would like to get in touch you may email me at kwkirklandrnc@hotmail.com
Kathy
hello everyone!!!
I suffer from back pain too. back in 2005, i had a work related injury. through the neglect of the company doctors i was denied services and was told i was ok and to return back to work, two years went by without making any treatment to my pain and suffering that in 2007 i went to court and beat the company for not doing enough for me and my injury. so they would pay for every medical bills that came along the injury. i had two herinated disc L4, L5. In august of 2008 after the surgery the surgon indicated to me that there was two large tumors bign. The experience that i have dealt for the last three to four years have hurt me in many ways, emotional, physically, sometimes i feel that am the only one out there like this, reading these blogs from everyone makes me feel that am not alone. i take norco and flexeral and many more.... does any one know any info on "bone stimluator" thats what i have after the surgery and will be soon remove. any sugggestion on how to explain a love one the pain that i am currently going there?
I am 36 years old and diagnosed with a blood clot in my lower calf of my left leg due to a work injury. I thought I was taking vicodin which the doctor said she was prescribing. When I called for a refill at my pharmacy they informed me that it was Norco that I was taking and not vicodin. What is the difference? When I look it up they all say the same thing. Medically perplexed here and need some advice
It is sad to read your post.I have been in pain a long time. I have cronic back pain. I have tried different pain meds from the doctors.I can't take pain meds because of side effects. The only OTC I have found to help is percogesic.You can buy it at walmart. You have to ask for it. It is behind the counter, but you can get it by asking for it. You can take compazine which is for migranes and lie in a dark room for 30 mins, and it will be gone most of time. You can get your doctor to call it in at walmart. It cost $ 4.00
Good Luck!!
Nita
bad shape ive been pain management best hosiptal, ive tried 12perc aday, then 14 codones aday, 80mg ms contin, but 10years on oxycontion 125mg aday NOW MY !@#$ insurance wont pay for them WHAT NOW i dont have &370.00 per month THE PAIN IM IN and withdrawals i so sick i cant get up to go to doctors THEY KEEP TELLING TO PAY FOR MY MEDS c ause i need them I just dont have it
bad shape ive been pain management best hosiptal, ive tried 12perc aday, then 14 codones aday, 80mg ms contin, but 10years on oxycontion 125mg aday NOW MY !@#$ insurance wont pay for them WHAT NOW i dont have &370.00 per month THE PAIN IM IN and withdrawals i so sick i cant get up to go to doctors THEY KEEP TELLING TO PAY FOR MY MEDS c ause i need them I just dont have it
Hi. I am a sufferer of chronic migraines as well as debilitating menstral migraines which land me in the hospital once every month. Pain medications seem to work fairly well for controling most of these migraines but my primary care physician is not willing to continue prescribing the medications I need. She wants me to see a pain management specialist and I agree that is probably the best course of action for me at the moment. The problem I'm having is that the only specialist that i can find that will accept my insurance has a 6 month waiting list. The pain is taking over my life and 6 months is far to long to wait to deal with it. It doesn't seem right that I should be denied proper treatment simply because i am legally blind and on medicaid. I've tried every service I kno of to locate pain management doctors that accept medicaid but with no success.Please if anyone could offer any information I would be more greatful than words can say. I live in connecticut. I'm only 24 years old and am currently unable to work or make it through even a single semester of college. I'd like to make an attempt to take control over my migraines and thereby control of my life. Thank you. Please email any info you may have too mollycita883@yahoo.com I hope someone might be able to help me or at least guide me in the right direction.
Hi. I am a sufferer of chronic migraines as well as debilitating menstral migraines which land me in the hospital once every month. Pain medications seem to work fairly well for controling most of these migraines but my primary care physician is not willing to continue prescribing the medications I need. She wants me to see a pain management specialist and I agree that is probably the best course of action for me at the moment. The problem I'm having is that the only specialist that i can find that will accept my insurance has a 6 month waiting list. The pain is taking over my life and 6 months is far to long to wait to deal with it. It doesn't seem right that I should be denied proper treatment simply because i am legally blind and on medicaid. I've tried every service I kno of to locate pain management doctors that accept medicaid but with no success.Please if anyone could offer any information I would be more greatful than words can say. I live in connecticut. I'm only 24 years old and am currently unable to work or make it through even a single semester of college. I'd like to make an attempt to take control over my migraines and thereby control of my life. Please email any info you may have to mollycita883@yahoo.com Thank you. I hope someone might be able to help me or at least guide me in the right direction.
i am 42 years old live in Utah which by the way is probably the worst place in america to suffer from chronic pain due to the fact that every doctor i've seen believes i'm a drug seeker. I had an m.r.i. in Oct.2007 the persons who read the m.r.i. said i have degeneritive arthritis in both my lower back and in my neck.I also suffer from terrible hip pain at night constantly waking me up several times a night.I have no health insurance and it costs a small fortune any time i go to a doctor. i have 1 doctor prescribing me 120 lortabs a month, another small fortune trying to pay for them. I trully sympathize with all those that are suffering as i am! my problem is, i have become somewhat immune to these pills after taking them since 2005 due to an atv accident i suffered in 2005. I broke my pelvis in 2 places, crushed my right testicle, and am now impotent due that accident. In fact, every since that accident my pain throughout my body has worsened, both physically and mentally. I have been married for 9 years now to an angel, (she has to be, to be married to this grouch)but i am hoping that if someone from Utah who may read this and has possibly found a doctor that has trully helped them get there life back, can help me. I need something stronger than what i take now,(10/500) or more than what i am prescribed now. It also takes 4 tabs now to get me out of bed in the morning, and i am given only 4 per day. I find myself running out 2 weeks before i am refilled again and those 2 weeks i start having suicidal thoughts, i'll take 20 tylonol a day just to get even a minute of relief. I know this is bad for me. I take an NSAID, Mobic, supposed to help with the pain, and I take Lexapro for the depression i suffer when i am out of Lortab. This has become a vicious cycle and I'm so tired of it! PLEASE someone listen and help me.You can e-mail me at ed_street@yahoo.com I thank you in advance for listening to me and my thoughts and prayers go out to all those that suffer as I do and to the family members that have to see these things happening to there loved ones! And for those that stand by there family members, I salute you! YOU ARE ALL ANGELS!!!!
It was an anonymous reader that talked about RSD and her mother having it. I was diagnosed with RSD almost 18 years ago. Back then DR.s didn't really know what it was. For many it was in our heads. Get over it. It is not real. It was almost 1 year and many many DR.'s later that I found a diagnosis. It affects my right hand and only the last three fingers. It actually went into remission for the better part of ten years. With little flair-ups here and their. A year ago it came back with no mercy. I now have RSD in both hands with no success in relief. I have been denied an appointment at Mayo Clinic. I was told that I have had it too long to be seen at Bethesda.
In the mean time of trying to have a normal life I had an accident and cut my left thumb and pointer. As soon as I cut I had RSD there too. My left hand is not very useful.
Living with RSD has taught me many different things but one of the main things is that you never give up. Stick to your guns. Someone out their will listen. Someone out their knows what you are talking about. Hypersensitivity is nothing to mess around with. The thought of touching some items is just too painful. Hair, wool, and terry-cloth are the worst to touch. When it makes your stomach turn and you feel like you are about to throw-up. Fleece on the other hand is tolerable.
I live in North Dakota where temps are a bit cold. I cannot put gloves on. Can't find any that doesn't hurt and are wide enough at the cuffs.
I should also say that sweating of the hands is also a problem. Most of the time my hands are closed except the 2 fingers on my right hand and my thumb on the left. I wear my husbands winter jacket because I can get my hands out of it. Since my accident I have not worn anything that has a zipper or buttons for 6 months.
This is not a pity party, but an informational statement that I hope that I am not the only one out their that has had RSD for this long.
I have a great support system. My friends and family are great. It is not even a thought for them to open things or zip and button items.
The days of me telling DR.'s what I have are close to over. Alot of them now believe that it is real and it is not in my head, but their are those that doubt.
Step into our shoes for a moment. Touch some very rough sand paper. Know what that feels like to your fingers and palms of your hand? Now touch your counter tops. Smooth? To a person with RSD our counter tops feel like that sandpaper you touched. It is real. It is real and if you doubt how could any of us come up with such out-landish comparisons. I mean really sand paper and a counter.
There is hope and never give in to a non-believer. Move on and find someone else to see.
Katy in Fargo, ND
Do you have a pain clinic where you live? or a clinic that specializes in headaches....?...I feel for you....I wish you the best.
Just an FYI for migraine sufferes, I used to have them until I stopped taking birth control pills, took 4 years and waisted $ on tests before a doc suggested it might be the pill, It was amazing how they went away.
I'm not sure if I'll get any answers on here, but here goes. I'm 28 and have had chronic pain since the age of 21. I've been diagnosed with RA, Fibro, Lupus, and digenitive disc disease. It's really awesome to read stories about people like me. The past year has been hell and the pain magnified. Not to mention the depression. For 2 years I have been taking methadone which has given me great relief. I started to notice that I was dependent on them which freaked me out. So I went to my dr. and told her I wnted to get off them and try without for awhile. She suggestted detox and rehab. Since I don't have insurance I quit cold turkey.(it was hell) Now that I've been off them for 2 months, the pain is horrible. I take so much advil it scares me. The question I have... Can I go back to my dr. and get back on my pain management plan? Legally can she work with me? Or do I need to go to a new dr.? I live in Washington State so if anyone has answers please let me know! I hope everyone else is finding help.
jboyd313@aol.com
After cervical cancer and post radiation after a radical hystorectomy, I've had many side effects. One being radiation cystitis, which is treated the same as IC, Elmiron, Prosed (daily) and Macrobid upon relations have been the answer there... The surgery was 18 years ago and they didn't encourage "core" rehab post surgery. My back blew and now I have DDD, DJD, 3 Herniated discs, 2 annular tears, Stenosis, Spondylosis, Radicular pain and even though I take many oral meds, I continue to have many procedures through Pain management. I have been depressed on and off from NEVER being out of pain... I've seen 9 neuro-surgeons, it boils down to me needing a full fusion at 60, which is 16 years away. I'm concerned about the effects the meds will take on my liver etc, in the interim... I get facet injections along with an epi at the same time, my pain management Dr. is also a phyciatrist, so he totally understands every aspect of the toll chronic pain puts on your phsychie! Continue to find Dr's that are sympathetic to your situation and if you have been employed for most of your adult life, there is a section in your Social Security Statement that comes bi-annually that you can apply for if you have enough credits... It is usually not an easy process, however 9 out of 10 people get declined the first time they apply, they don't know they can appeal and there are attorneys that handle this topic specifically... I was approved the first time around in 2 months. I also get $$ for my son monthly until he is 18, regardless of what my husband makes!!! If you are declined, reapply, you may have to get an attorney to represent you. From the narcotics, let's face it - those of us that are on them, we are constantly in a state of constipation. I found because generic oxy is not going to be made anymore, it's worth getting the real thing, no more constipation, along with stool softener... I have the plethera of meds for each symptom I get and treat as I go, ie. migraine - Imitrex... The list for me is very long, due to the 12 things wrong with my back... It's so hard to see past the pain and not be caught in a frozen state in your head! Since radiation, I'm lactose intolerant and one of the generic oxy's had lactose in it as a filler, for the first few weeks on it, I could not stay off of the toilet or out of the shower, I literally called my husband away for work and I said I'm considering suiside. I can't live like this, who ever said above - BE YOUR OWN ADVOCATE - I WOULD BE DEAD FROM THE CANCER HAD I NOT GONE TO DR. AFTER DR.! I was "too" young for cancer and biopsies. But let's face it cancer doesn't discriminate! You have to continue to fight for good doctor's after all, they know the BIG picture and we can't see through the pain... Find a pain management Dr. that will do things you want as well!! He does things to me he has never done to others. I recently had 6 facets and 1 epi, which would have totalled 1 full epi, so he divides it up. I feel much better from the "cocktail" then one site! Alternative approaches last for no more than an hour or two... It's so frustrating. I'm just curious since I'm considered HIGH RISK, could I build up my core, which makes my bladder sore! could I realize pain relief, due to the degenerative damage? My oncologist said under no circumstances should you have back surgery until you can't walk, because I work with colleagues who I along side and they have one surgery after another and their back's are forever compromised! In the meantime, I digest many meds, too many to count. You try not to dwell on it, but let's face it, it is always in the fore-front of our brains, you can't escape the pain! The hot tub has been great however, the season is upon us again Thank God, so we need to hang in there and hope for more less invasive procedures down the road... Don't be afraid to find the right fit with a Dr. and don't let the "Stigma" of disability get to you. I could not commit to work, it's just not in the cards... The heating pad is my best friend! But let's consider, it's so much better than if I'd not survived the cancer those years back... I also had HPV, so those of you that have daughter's PLEASE don't resist Gardisil, I would not of had to have a radical hystorectomy, no chance of carrying a child myself, someone else did it for us. The numerous side effects from radiation, including the back issues... Listen to your gut and keep going to Dr's if you don't feel right!!! They "practice" medicine all day long, ask friends and family for referals, if necessary, but be dilligent, no one else will do it for you! GOOD LUCK TO ALL OF YOU!!!
My husband served in the U.S Navy and we have been under the care of a veterans Dr. He has been diagnoised as having fusion of c3-c4,c4-c5 also with ruptured c6 & c7 with narrowing of the spinal canal and leakage of the spinal fluid. He had been denied SSI and Surgery to fix this problem we have finally moved out of california and he has been seen by our GP and they immediately started X-Rays and has already refered us to a neurosurgeon in Springfield. Does anyone have any suggestions as to anything else we can do.
PLEASE READ !!! My husband had an accident a year and a half ago, and has been miserable since. He has metal and 5 screws holding his right collar bone together, which is very upsetting in appearance, and very uncomfortable and sensitive to anything touching the skin, yes anything, even his shirts, seatbelts, etc... But his most serious injury is his back. He is getting ready to have surgery. First he will be getting a anterior fusion surgery, then 2 weeks later he will be getting a posterior with instrumentation surgery. We are hoping so much that this helps him. I pray several times a day that he can just go back to normal. He was 6'3 when the accident happened, and now he is 6'2" and constantly in pain, and constant headaches, and one sleepless night after another. Thank GEE OH DEE we have found the surgeon we have. We know there are lots of serious risks , but we have high confidence this will help him. My husband has gained like 30 pounds, and has aged probally 10 years from his everyday struggle for normalcy. He has seen 16 Doctors in this year and a half and has had several treatments like shock treatment, aqua therapy, pain meds, muscle relaxers, sleeping pills, massages, lumbar stimulations, chiropractor's. My husband has slept in a recliner this entire time. I never knew what pain was until my husband was hurt. It has changed our entire familys' lives. We have had no sex life at all, and his only pay now is disability. I was always a stay at home mom, and last year I went and earned my GED and have now been in college since September of 2007. I know I need my education and a degree to bring more money in so we can live somewhat normal financially. That's something else I would like to add, you get hurt at work, and your supposed to be protected by the government, but it's totally the other way, the employer is protected more than the employee. My husband get's one check a month for only about 20% more than the weekly pay he made for year's. Add that up, his pay has decreased significantly. He will be getting more pay in the future, but it's just not fair. We all need to fight the Government and change those laws to PROTECT AMERICANS that do get injured on the job. If anyone has any information or knowledge to other treatment available for my husband, please contact us. We would greatly appreciate it.
how long does soma stay in your system?
I finaly found a message board that deals with cronic migrains!!!
( sorry for some spelling and puntation not my strong subject )
I have had migrains sinces i was 12 yrs old i am almost 40 now. it has and will be a long road. you name it and i have probly tried it very few things work, i am very fusterated and angery tired of having to tell dr's over and over my problem. I tell them that when i was 8 yrs old it was desiced that i had tmj and had to have braces for over 10 yrs my jaw was ajust 10 times its size and much more but it was either braces or have my jaw broke and reset around 16 to 18 yrs my parents choice braces. all dr's say it has been way to long ago for that to be the problem but i stand firm.
I have read tons of info on migrains and done lots of migrain diaries, i am carful of what i eat like no ketchup has red dye in it, no chocolate ever ( sad huh ) and many other things like palmkernal oils and seasame oils and all fast food. ( that sucks and is hard but i take no chances)
anyway to top alot of this I dont work as have lost to many jobs due to my migrains and my husband works extra hard but we are income challenged all the time.
I do my best even if it means going to the local salud clinic were they dis beleive me most of the time. my main goal is to stay out of the er at all cost. they always want to give me a catscan and ivy meds and it cost 5000 a pop. so we have lots of medical bills.
the med plan i am on now is old school for a couple reasons one very few things work and ples they are cheaper than most i have generic fioriset and 5/500 vicodin and if i am lucky some times they will give me phenigen for nausa
I take my meds as perscribed but there are many times i cant do anything cause i am limited by pain and the clock of when the next dose is due. ples back in
2001/02 i got preganet with my 4th child who was our only boy and most of my 9 months was spent in bed i also got high blood pressure with him. ( the rule of thumb is you usely get highblood pressure with your first child almost never your last) for 3 yrs or better my blood pressure has been in control no problems but they always want to blame it on my bloodpressure for my migrains and infact when my migrains are there worst my blood pressure is exstreamly normal infact it is great.
I take meds on a daily bases as I get migrains most times on a daily bases. I never know when i will get one, i can be having a great day having fun and boom i got one or i can wake up in the middle of the night in bad pain. ples they are in different spots hardly ever in the same spot 2 times in a row.
I may be poor but i have a great family and i am not a stressed person. i have a good sleep pattern and even sex life. i dont drink or smoke and am very invalved with our kids. I am about 20 pounds over my ideal weight but am happy were i am at, and i stay busy.
my migrains are very unpredictiable and never no when it is a bad one sometimes my ear will ache and sometimes i get nausaed very quickly. when i get sick there is not much more i can do for managing my pain at home but i never just rush in to er as i know it is a major ordeal and it sucks. I just love there useless questions like are you here just for pain drugs lol lol yep thats it i wake my whole family up in the middle of the week in the middle of the night so i can come in here for tons of questions and test and oh ya my favorite a ivy that almost always take 3 to 5 time to get in my arm.
I live in a very small town and yes they do know me and my history i have been to er 5 times in 3 weeks before and have also gone a whole yr without going too. just never know.
my dr is going to refuse me refills on all my meds if i do not go to a neraligits by the end of may 08 I am very scared that i will not have the funds for that as they are very exspencive here and we have no insurance on me or my husband just our children in our state.
oh ya i also have had bells palsy in my left side of my face in 2000 my children still tell me when my face is droopy. had my tubes tided in 2003. and had my gallblatter out in nov. of 2007 due to a large marble sized stone.
well that is my story. I am looking for help or ideas or even questions to ask my dr or even new medician ideas.
i have allergies to sulfer antibiotics, tylenol 3 with codeine ( can have codeine in other things just not those pills)
imatrax, toridal, maxalt, zomage, topax. some of these i have tried pills, shots, and rectal
there are alot more that just did not do any thing for relief or help in prevention can give those if needed but list is long
one other thing i have tried every natural erb remady out there too
but one of my big problems is i am a terrible pill taker i hate them all. i gag, choke, spit up, and even throw up ( nothing like having your child rub your back and watch you fish them out of the sink and have to take them over tell you get it down cause you know it is a darn stupied thing to tell the dr that you threw up 15 ples pills they just look at you and think ya right she is taking them to often or to many.
thanks signed a lifer of pain
please help
when repling please put in msg box migrain help thanks
Is it OK if after a bowel movement (the color of spicy brown mustard) to also have a the taste of bile, as well as the odor of bile? What may this mean for me?
To Anonymous that talked about "foot buttom and my calf been hurting" and a pain that "feels like a Charlie Horse pain".
I speak from personal experiences about the two conditions mentioned below.
The first thing I thought of when I read your post was blood clots in your foot and/or leg. Blood clots can cause pain like a muscle cramp. Blood clots are VERY DANGEROUS. They can travel to your heart and kill you. Please see a doc IMMEDIATELY and request (or demand if necessary) a sonagram to aid in diagnosis.
The other condition that sounds somewhat like your situation is restless leg syndrom (RLS), which I also have. After researching on WebMD, I found RLS can be caused by a low potassium level. I knew bananas are high in potassium, but also high in calories, so I experimented on myself to discover the least amount that would work for me. After several weeks of experimenting I found that, for my body, eating one banana with each of my three daily meals relieved the RLS pain. (Try one thing for a few days and if it doesn't help, increase the level somewhat and try for a few more days. keep doing until pain relieved.) When I travel, which is frequently, for convenience I take potassium pills (available in vitamin aisle at most drug/grocery stores). Again, I had to experiment on myself to find that, for my body, four 99mg pills per day relieved my RLS. Taking too much potassium can be DANGEROUS TO YOUR HEART OR EVEN LETHAL, so take only as much as YOUR body needs!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I noticed several posters asking questions about medicine propeties or effects. You can ask your pharmacist these type questions. He/She is a good source for answers to all kinds of questions concerning all kinds of medicines and/or conditions. Pharmacists are educated and trained professionals. Give it a try - they can be our friends. WebMD also has a lot of info about medicines and conditions.
For the posters who have a common thread of little or no attention from their docs, I encourage you to take your health into your OWN hands.
Research on the web and by talking with others to learn positive lessons from their mistakes. Go to appointments armed with knowledge so you can give correct pain info to doc and can ask intelligent questions to get the info you need from doc (and so doc cannot attempt to pull the wool over your eyes). Impressing doc with your knowledge about your suspected condition lets doc know you are a person to be taken seriously.
Doctors are **NOT** - repeat - NOT God! They do not know everything! There is just way too much medical/scientific information out there for them to know everything. Even at best, they are all just taking an educated guess! They do not know how the pain feels in YOUR body. Do not let them get by with having a dismissive attitude toward you. Grab doc's attention by saying something like, "I feel you are being dismissive toward me." This will perk up doc's ears. Docs can get in trouble with their State Medical Assoc for a bad attitude easier than with a malpractice charge.
But then, you must be a good patient by going to doc only when necessary. Don't obsess over every little thing.
Stand up for yourself! Docs are hired BY YOU to help you - they are YOUR employEEs. Don't act, feel, or talk toward them in a submissive manner. Be polite but FIRM! Stand/sit up straight, shoulders up, head high, look into their eyes, and let them politely know how you feel about your situation and how doc is making you feel.
REMEMBER - you have hired doc for certain services and expect certain things fom doc. YOU are doc's EMPLOYER. Accept the attitude unto yourself that you are a person that needs help, that doc is there to help you, and that you expect doc's professional help with a professional attitude.
My mother lets the doc's office tell her when to come in and she won't ask for appointments that are more convenient for her ride. Mother won't "inconvenience" the doctor by calling back if she's having side effects that scare her or just has legitimate questions. She won't accept that she's the doctor's boss. She acts like it's the other way around! So, of course, they treat her less like a person than I am treated by those same people.
The point is, people: We are all legally due certain patients' rights and we should expect them, and get them even if we must "demand" them by our attitudes, speech, and/or actions. (Legally, a list of Patients' Rights should be posted on a wall somewhere in every docs office.) I've walked out on two docs and never gone back because of their unprofessionalism; and as I left, said loudly enough for all within earshot (staff & patients) to know why I was leaving. I didn't do it to be mean, but to stand up against unprofessional doc behavior and to let others know in case they experienced same treatment. I also told family, friends, and acquaintances about that doc's bad attitude.
So, stand up for yourself as necessary, take your health into your own hands, and hire someone who will work WITH you.
Best wishes for speedy diagnoses and recoveries!
In Oct 2007 I was sitting at my patients house talking to her and all of the sudden it felt like someone hit me with a bat and then I remember getting in my car then I remember getting out at my moms and then laying there with this headache that I have never had in my life before .i took over my body and everyday since I have had a headache .I wish that I knew what it was if it was migraines or if there is really something goiung on the dr looked at me and said migraines but how the hell does he know and every dr I go to says the same thig but does want to take the time to find out . I have always been a good mom and my son was late so many days this last year because of my headaches and then I tried to tell the school they looked at me like I was the worst mother .I feel so angry I wish I knew .My grandmother had a blood disorder but I dont know the name and it gave her headaches but I cant find out she past away . :( I pray god will watch over you all even If its just for me thats for reading this .I dont mean any thing bad by that .
i need to know as quickly as possible how long does methadone stay in your system?
Anonymous,
All about Methadone.
Anonymous @ 10:11 AM - Try tylenol w/ either a cup of coffee or a No-Doz pill. Excedrin is acetomeniphen (tylenol), aspirin, and caffeine and is the only OTC that works on my migraines.
Caffeine works in two ways - first, it speeds the metabolism, which helps the acetomeniphen work faster. Second, it helps shrink blood vessels, which counteracts the migraine cycle of enlarged blood vessels - increased pain - increased inflammation - even larger blood vessels.
Lellyred - is the drug test a urinalysis or are they clipping your hair? If you are up for a urinalysis, you need to be clean at least 5 days to be sure of a negative result. 14 days is better.
my sister is suffering from more than just migranes. Her symptoms are insomnia, restlessness, tingling, and headaches. We have been to a few docters who have given her medicine. The medicine has worked, but appearently she can't sleep. She feels tired, and when she lays down, she tells herself, "I'm gonna go to sleep." But then doesn't. Can we give her any relief? Or is this maybe more than migranes? By the way, she's 14, so some medicines may not work.
I have just returned from yet another ortho appointment and was looking up RSD which is what he thinks my newest problem is, in addition to L5 S1 fusion 8 years ago, C3,C4,C6,C7 fusions in the last two years, migraines etc. I have been off of oxycontin for one year (tomorrow)and what an ordeal that was (another story for another time) but still require frequent injections, opiates, neurontin, topamax to function barely. This is my 3rd ortho I like him and so far trust him as he is not scalpel happy. I stumbled on this blog and even though I was regreting having to have cancelled my therapist appoinment. I found you folks who know what I feel like. I burts into tears like a big woose. I thank you all and will remember you in my prayes and talk with you frequently because I am at a loss. In May I lost my job. It was physically killing me anyway. I am lucky enough to have decent insurance through domestic partner benefits, another burden I feel I am placing on a man who has been my hero and nurse through out all. How do you apply for disability? Is it a long shot anyway. I recently have beeen diagnosed with diabetes as well. I love to work I miss friends and being out in the wolrd. I used to work with adults with mental retardation and disabilities ironic huh? Any advice would be appreciated. God bless all of you, I am not a religious nut but I have been in a really dark place lately and really discusted with my stupid body which used to be so much fun. I don't know what I would have done if I had not have seen this tonight. Thank you , you are all heros, it must get better. Right?
Gratefully,
TO'B in Plano Texas
a few years ago i was on vacation and had a charlie horse in my calf that wouldn't go away. it would ease up sometimes but it didn't go away. after about 5 days i went to an emergency room to get some muscle relaxers. They did an ultrasound and i had a dvt. i had none of the other symptoms associated with a blood clot so the dr. was really surprised. i had to be hospialized until they could get rid of it. it is very serious. go have your leg checked by the dr. even if you have no swelling, redness or heat you might have a dvt
what is RSD?
What is RDS?
You can read about Complex regional pain syndrome (CRPS), also called reflex sympathetic dystrophy syndrome (RDS)in this WebMD article.
If you have questions, please post them on Indie's message board, Pain Management: Indie Cooper-Guzman, RN.
HELLO I AM A 33 YEAR OLD MAN WHO IS IN PAIN ON A DAILY BASIS. IT STARTED WHEN I WAS WORKING FOR A HOME IMPROVEMENT CHAIN DELIVERING APPLIANCES AND SUCH. I TORE MY ABDOMINAL WALL OPEN IN 3 PLACES AND WAS TOLD I PULLED MY GROIN BY A WORKERS COMP DR. MY COMPANY CONTRACTED.THEY SENT ME BACK TO WORK AFTER A WEEK OFF AND I FURTHER TORE MYSELF OPEN. I AM A LARGE MAN (6'3" 330) AND I WAS A POWER LIFTER WHEN I WAS YOUNGER SO I KNEW IT WASN'T A STRAIN, BUT THIS IS AMERICA AND WE THE PEOPLE ARE USELESS STUPID DRONES, ASK ANY DR., POLITICIAN, OR UPPER MANAGEMENT SCUMBAG, THEY'LL TELL YOU. SORRY I AM STILL A LITTLE BITTER. ANYHOO I WENT TO THE HOSPITAL AFTER BEING SENT BACK TO WORK FOR A WHOLE DAY!!!! AND WAS TOLD I HAD A STRANGULATED HERNIA. I HAD A SURGERY ,WENT BACK TO WORK HAD ANOTHER SURGERY, WENT BACK TO WORK, HAD 2 MORE SURGERIES ( ONE ON MY TESTICLE WICH WAS THE SIZE OF A SOFTBALL FOR 7 MONTHS WHILE MY COMPANY AND THEIR LAWYERS SAID IT WAS A BIRTH DEFECT) I APPARENTLY " JUST DIDN'T NOTICE" ( YES THEY SAID THAT). EVENTUALLY MY LAWYER ASKED ME A FEW QUESTIONS ABOUT THIS DR WHO WAS OPERATING ON ME ALL THIS TIME ( OVER THE COURSE OF A YEAR) AND SAID I SHOULD SEE ANOTHER DR. WHO HAD HELPED ANOTHER OF HER CLIENTS. SINCE MY "DR." HAD SENT ME BACK TO WORK FULL DUTY AND TOLD ME I NEEDED TO " MAN UP" AND DEAL WITH MY PAIN- NO MEDS ALLOWED WUSSY BOY( I WOULDA KILLED THAT MAN IF IT DIDN'T MEAN MY SOUL WOULD ROT IN HELL NEXT TO HIS) I AGREED. WOW!!!!!!!!!! ANY PERSON OUT THERE WHO IS SUFFERING FROM "HERNIA" PAIN OR THE LIKE YOU NEED TO SEE DR. DAVID GRISCHKAN. I WILL BE ETERNALLY GRATEFUL TO THIS MAN FOR GIVING ME BACK MY LIFE. HE CAN BE FOUND AT THE HERNIA CENTER OF OHIO ONLINE. WHILE I STILL HAVE SOME DAYS WHEN I THINK MY GUTS ARE GONNA FALL OUT ON THE FLOOR IF I COUGH IT IS EXTREMELY RARE. I USUALLY HAVE MODERATE PAIN ON A DAILY BASIS BUT IV'E FOUND THAT MODERATE EXERCISE HELPS. I KNOW IT IS HARD AND EXTREMELY SCARY TO DO THIS WHEN IN PAIN, AND IT DOES HURT WORSE AT FIRST, EVENTUALLY IT HELPS ESPECIALLY WITH BACK PAIN. OH BY THE WAY THE "DR." WHO ORIGINALLY OPERATED ON ME LEFT SCAR TISSUE SO BAD I COULDN'T WALK NORMALLY FOR A YEAR OR STAND LONGER THEN A FEW MINUTES.HE ALSO DESTROYED MY RIGHT NUT AND BASICALLY SUFFOCATED MY LEFT ONE BY REFUSING TO FIX WHAT HE DID WRONG UNTIL WORKERS COMP WOULD PAY FOR IT. NONE OF THE THREE REPAIRS HE DID ON MY TORN ABDOMINAL WALL HELD AND ONE WAS LEFT UNATTACHED AT ONE END AND SO EVEN THOUGH I WAS COMPLAINING OF STABBING PAINS CAUSED BY A METAL PATCH CUFTTING MY INSIDES TO SHREDS 2 DIFFERENT HOSPITALS COULDN'T FIND THE PROBLEM ON AN MRI. 99% OF DRS. ARE WORTHLESS SCUM PREYING ON THE REST OF US AND THE 1% OF DRS.WHO ARE TRYING TO HELP. AND IT'S ALL BECAUSE OF HOW OUR SOCIETY/CULTURE IS RUN. GET MONEY. ANYWAY I'M ANGRY AND WISH SOMEONE WOULD PUNISH( NOT FINANCIALLY EITHER) THESE CREEPS, AND I TRULY SYMPATHIZE WITH THOSE OUT THERE WHO ARE LEGITAMATELY SUFFERING EVERY DAY. GOD BLESS AND LOVE YOU ALL, AND LOVE EACH OTHER, WE ARE HEADING THE WRONG WAY AS A RACE. LETS STOP THAT, HUH? ( IM NOT A HIPPY LOL I OWN GUNS AND EAT RED MEAT)
anonymous, I agree with the last guy with the hernia, there is nothing but scums of doctors out there saying the insurance company millions of dollors just to save there own ass. I hate Workers comp. I fell at work and trip over a kid and broke my wrist in two places with shattered bones everywhere and the w/c doctors never did surgery, I am so mad cause I am in terrible pain, 2nd opinion said he would of defentily he would of done surgery, but like they give you 20 seconds of there time, no one paid attention to me about how bad my pain was. 3rd opinon is coming with a hand specialist (so he says). But I feel I have the same symtoms of RSD numb/tingling/sensitive/throbbing/ good luck to all you pain suffers I hope we all get better. Lets all be the sqeecky wheel to our doctors.Dont give up, I wont"....
To all the posters - I am an attorney who is now enrolled in nursing school, and have also suffered from bouts of chronic pain due to GI problems, but nothing compared to most of you (my heart breaks for you all). I have a few words of general advice I hope will be helpful.
To those of you unemployed and uninsured due to your health, you may be eligible for state or federal disability insurance. Check with your state (the state web site is a good place to start your search), and also the federal social security administration. Regarding worker's rights, federal law is complex, but basic information on the Disability Act is available on the federal government web site. Also, check with your local Bar Association, which often sponsors free or low cost legal clinics or "call ins" where you can ask licensed lawyers about your rights, how to apply for disability, etc.
Regarding pain management, studies have proven that meditation and relaxation therapy helps people to better manage pain and otherwise feel healthier. Does it replace pain meds or mean that the pain is all in your head? Absolutely not! But there is an undeniable connection between mind and body, and it also helps with the inevitable frustration and depression that accompanies chronic pain (a quote I once heard, which I'm sure all of you can relate to: "Pain is the ultimate character assassin"). A huge variety of CDs and downloads from the internet are available of guided meditations for healing. Lay down in bed or get in whatever is the most comfortable position for your condition, put on headphones, and let the voice guide you to relaxation. It will not help when you are experiencing an episode of what I call "Level 10 mind-numbing, white knuckled, pain), but it will help for all the other times - at the very least it can help you to not feel quite so overwhelmed - that you can hang in there because there is hope. Another benefit: it helps with doctors who may be hesitant about whether your condition is legitimite or instead the result of psychological problems; they like hearing that you engage in smart self-help (as opposed to wacky self-help) strategies like relaxation therapy/meditation, massage therapy, exercise (whatever exercise you can do - even if it's just sitting in a chair and doing arm exercises to get your heart rate up), etc. Finally, please remember that it's not you against the medical establishment (although it can feel that way, I know, I've been there). The overwhelming majority of medical staff are in the job because they care, but they're human beings who get frustrated by the tough cases. Telling them that you believe they care about your health and must get just as frustrated as you do can be a great way to help establish a bond with your caregiver. So, when expressing your history and frustrations to your caregiver, you add to the list the things you do to try to help yourself as best you can, and you let them know that you believe they're trying their best. Will this help with those providers who are just jerks or are simply incompetent? No - they are out there and you'll just have to go back down that frustrating road of finding someone else. But most aren't idiots or moneygrubbers, so please hang in there.
For those of you who have developed depression as a result of your pain, there are numerous on-line support groups, as well as free support group meetings in most cities (google "depression support groups"). You are not alone.
Finally, for help with buying prescriptions, google "Partnership for Prescription Assistance"; in addition, ask your healthcare provider if any of you meds may be available on the WalMart, Kroger's, or Walgreen's generic prescription list (average cost for generic on list is $10 for 3 month supply).
There are days when it's extraordinarily hard to believe this, but say it anyway: our body can't trap us, only our mind can do that. You have a right to a life - keep fighting for it.
I have had migrains and headaches everyday for the last 7 yrs. I finally have a dr that had me take a CT scan. So what the scan showed was, I have mastoiditis. He thinks that the headaches,the migrains, the neck pain are caused by this. If you don't know what mastoiditis is, it's caused by ear infections. So I have fluid behind m ears and it has to be removed. Well every artical that I look at says nothing that mastoiditis causes headaches or migrains. I don't know wiether to be releived. I feel the cause of my migrains is not caused by mastoiditis. Anyone ever had this mastoiditis? ANd if so.... when the fluid was removed did the migains go away?
Confused in Tucson,AZ
i am 27 weeks pregnant and i have a herniated disk in my back from an old work injury that still gives me alot of pain,before i got pregnant i was taking soma tabs(muscle relaxers) for the pain. I need to know if i should continue or stop, and if i continue will it affect the development of my unborn baby?
I can relate to every one on this site,I have suffered from migraine's for the last six years. I have tried all migraine medications, none of them seem to work. I am 37 years old , a single mom with two kids. it takes all i have in me to get out of bed some days and go to work . I do it because I am all my kids have!! and its important to me to take very good care of them . but sometimes when I come home all I can do after making dinner for them and making sure they are taken care of is lie in the bed, its no way to live!! and its starting to depress me , I just want to feel normal!! I get my migranes every day, my pcp will not give me anything strong and I do understand why, but on trips I that I have made to the er , what they give me by iv, takes the pain away. I have had to make trip's to the er at least once a month!! some of the doctor's there treat you like you are a abuser. they need to know that is not always the case with everyone . not every one in pain is just out for narc drugs, I sm just seeking releif!! I also have lupus I do not know if this could be the reason for the migraines?? just wish I could find a doctor that would not jude me but help me , instead of giving me medication's that I have told them have not worked for me ..... but they still give them. I even had one doctor on my last er visit tell me that I was not in pain.
I am so sorry for each of you on this board suffering with pain.
I have had pain 40 years. I had a stroke when I was so young, and a few years ago I fell crushing my femur and later my hip.
I'm in a wheelchair now. I never thought I would be in this condition...never. I am in the house constantly and if I don't really watch myself, I can get very down.
I don't take pain rx. I know if I explained all of this to the doctor, he would "load me up" with drugs and I don't want to do that.
In the hospital they gave me pain meds and I didn't even think clearly. I don't want to live in that fog - it's terrible.
Yes, I hurt all the time. I keep thinking all this will end, but I know I am here for a purpose.
It seems that for people (people period!) to even talk to, I don't dare talk about this. It is a "downer" you know. I am so surprised at peoples attitude in general.
When the pain really gets to me,I take 2 Tylenol. It helps some...but of course, tylenol is only temporary.
I believe I could write a book on this subject. I have lived it, and it is very difficult. For me, I find that people will talk if I'm perky - they do not want to hear the negative. I talk on the phone some because no one SEES the wheelchair.
Having experienced so much over the years, I wish I could just talk to you face to face.
Keep faith, (or get faith) in God. No one else but him has seen me through this.
Best wishes
I have read all your posts and my heart goes out to each and everyone of you. My problem is weird at least to me, when I bend my arms, like when I'm lying down, my fingers go numb and I get an unbearable pain in them and my hands right around the soft cushy part of my palm. As I straighten my arm the tingling of the fingers start to lessen and then the pain get so severe I feel like crying. I can't rub them, it makes the pain worse. Does anyone have any idea what is causing this? It is like I said weird to me.
I was diagnosed with rsd,which started after I sprained my ankle.I get sympathetic pain block shots in my spine.I was wondering can it be cured.
I had a hernia repair with mesh in Dec of '07. Immediately I suffered uncontrollable pain. My surgeon diagnosed the pain as a nerve that was caught in the mesh during surgery. I went through more pain with shots to my groin for 6 weeks before opening the incision again to try and sever the nerve he thought was caught. This procedure was unsuccessful. So I saw another Dr. who added another medication to another 8 weeks of shots to my groin. Finally nerve ablasion was done and part of the pain disappeared. Due to all of the swelling, I then lost a testicle. I still have chronic pain in one area of my inner thigh. I take neurontin, ultram, 600mg & 800mg ibuprofen, lidoderm patches and at times darvocet or percocet. I recenly saw another Dr. who prescribed only the Ultram and Levequin. I guess I will give it a try. I am truely miserable and am looking for anything out there that may help!
For the anonymous level 4 cervical. I understand your issue with neurontin. I have fibro and my husband has chronic pain from nerve damage caused by a surgery. We both take the neurontin. He is a heavy equipment mechanic and I am a preschool teaher. Some days we feel we can't make a clear descision if we wanted to. It is hard to drive and to feel you can function clearly, especially when responsible for others. Eventually some of that will go away after your body adjusts. For us we haven't seen a great deal of improvement in pain and often wonder why we bother. Has anyone ever accused you of being a hypocondriac about your pain? Just wait till a Dr. or friend tries that one on you. Feeling your pain...Good Luck and hope you find relief!
Help! Does anyone have anything new for nerve damage pain other than Neurontin? I am so sick of hearing that word. Someone, somewhere in this world has to have some idea other than neurontin and narcotics. We are not all hypocondriacs! Chronic pain is a real thing.
CRONIC PAIN DISORDER.....I have been dealing with this for 7 years. I am only 38 and I don't want to know how I am going to feel at 58. I wouldn't wish this on anyone. I can't remember the last time I did not have a pain somewhere. I have had 7 surgeries and they have not improved to much at all. I am on a lot of medications....hopefully someday I won't be, but for now it is the only hope I have for my sanity. I know what it is to hurt everyday....some not so bad and other days it is really bad. I do know my limits to what I can and can not do. I am greatful to be alive and have a great life even in the pain I have on a daily bases. You have to fight through the pain....it is a life time struggle and I can relate to all of you. God bless you all.....your in my prayers!
Neurontin...have you tried Lamictal?
Believe me, I'm with you all! I have had both my knees replaced, have RA, spinal stenosis, degenerative osteoarthritis, and the list goes on...(if you want to read about it all go to painorpainless.blogspot.com) Just keep talking to your doctors. If they dismiss you, find a new one. Find PAIN SPECIALISTS! Don't try to convince your regular doctors, it just won't work. And don't give up. Someone will believe you.
I am also a pain sufferer. I have scoliosis (probably not spelled correctly). Any way my spin is shaped like an S at the bottom. 10 years ago I was also in a bad car accident causing 2 discs to herniate. Since then I have 2 more herniated discs and the original ones have since ruptured. I have been to doctor after doctor after pain doctor. I am scared to death to go through the surgery that I only have a 70 percent chance of walking out of due to where my injuries are compared to where the scoliosis is (same spot). I have been told by numerous doctors that the way pain medications work is by altering your state of mind. There is nothing that is magic and will totally get rid of the pain. Unfortunately for all of us pain sufferers who do not like the feeling the pain medications give us. My thoughts and prayers are with all of you. I have also been looked down on by many doctors even though they have my MRI in hand and see first hand how bad my spine is. I really believe that some people should not be doctors because they have no clue what it is like to go through all this pain. If they had just one day of half my (and or your) pain I truly believe they would look at life differently. Until then we have such jerks like the ones you all have spoken about who went into this field of employment for the money.
10:15 PM
Anonymous said...
I suffer from intersitial cyctitis. I had to go to 8 different doctors until I found a Urogynecologist who was familiar with this condition. This doctor did not make me feel that the terrible pain I was having was just in my head. This I.C. is the breakdown of the mucus membrane that protects the bladder wall. If the urine gets inbetween the mucous layer and the baldder wall it is like putting lemon juice on a open wound. Not much is known about this and I find it hard to find articules and treatments on line or any where else. Does anyone know more about this disease? I would like to know as much as I can about it.
I'm posting in reference to this ..... I too as well suffer from this. I went to a Urologist yesterday and he did a cystoscope and said he found nothing but irritability in my bladder.However he did not look in the place that I asked him to look. He just looked straight up into my bladder. He acted like he was in a hurry doing the procedure now I have to go through a catscan with and without contrast. If anyone had any ideas as to this please email me at MsMaryW@hotmail.com. I also have the next to almost severe level of Degenerative Disc Disorder.... The lower 4 to 6 disc in my back are fusing together. I've gone to a chiropractor and now I feel like the pain is worse than what it was before and sometimes I wonder if it's a possibility that since my disc are closing down on my nerve endings could that be a cause for this pain. All I ever take for it is tylenol and tylenol pm to get some kind of sleep. Between the pain in my bladder and the pain in my back I'm lucky if i can sleep two to three hours at a time. I'm in the process now of filing for disablity. I see their dr on Friday.
Fioricet or Butalbita with caffiene for migranes (prescribed) and oxycodone for general body pain. Keep in mind that Oxycodone is a narcotic, and frequent use WILL have you addicted. If you suffer from chronic migranes, fioricet is the way to go. Find a clinic that helps the uninsured and see a neurologist, IMMEDIATELY.
Pains in your head are nothing to play with, even if it is JUST STRESS. Deal with em, and take care of yourself.
Nope notta a Dr. Frankie
(i'm no doc, for real)
I suffer from severe diabetic neurophy of the hands and feet (the worse of the two). It all started out with a sore heels then it progressed to the rest of the foot. Over the past 9 years I have taken cortisone shots in the tops and bottoms of both feet, no luck with the foot pain, just the pain of the injection. I tried accupuncture and that didn't work either. I have tried the following drugs to help me make it through the day; Amitriptyline, Nortriptyline, Gabapentin (12 - 400mg. capsules a day), Methadone, Morphine and half a dozen other drugs that I can't remember the names of over the past years. My regular doctor doesn't know what else to do and my former neurologist just kept tying new drugs on me and all they did was either upset my stomach, or give me constipation. Anybody out there have a possible solution that I might try.
I just had (after suffering pain for nearly 20 years in the L5 S1 area) a spianl rhizotomy. The pain is 70% better. Tell you PCP to prescribe a pain management doctor that can sucessfully do this after mid branch injections and let your insurance company suck that procedure down! The drugs are only a temporary fix and as you probably already know-pharmacists, doctors and the like get tired of prescribing narcotics. This is the best the pain has ever been!
2 years ago, almost to the day, I was almost killed in a stunt at a football game where I landed on my chin and my body flipped more than enough to break my neck, but I didn't. This is after living for a number of years with chronic back and some neck pain. It took over a year (I know, its just a year, but anyone with chronic pain knows that it gets old fast) to find a doctor that would work to diagnose my shoulder problem, which turned out to be a torn labrum, leading to arthroscopic repair and 12 weeks PT. It took another 5 months and 5 more doctors to learn that for the past year and a half I'd been living with unstable C-2 and C-3 vertebrae. I was in a neck brace for two months, then went through two rounds of steroid injections this past spring. After insurance ok'd the request, last wednesday I was able to have my first of two radiofrequency neurotomies in my c-3 and-4. It's so hard to find the right doctors, but when you do, it is such a good feeling. I would recommend to anyone in Ohio the Ortho-Neuro team out of Columbus. I've had all my procedures at Mt. Carmel in New Albany and am hoping to be in therapy in another month and a half, and soon, back up on my horses. And by the way, I'm 17.
NAME IS GARY,
IN 1990 IWAS HURT ON THE JOB AFTER KNEE ONE SUR. AND 8 MONTHS OF THERPY MY LEFT LEG WAS STILL COLD,BURNING SWELLING THE DOCTOR WAS ALSO A FREIND OF MY BOSS. MY WIFE REQUESTED TO SEND ME ELSE WHERE. I WENT TO UAB BIRINGHAM AL.
I WAS TOLD I HAD SEREVE NERVE DAMAGE TO MY LEFT LEG --KNEE .
IHAVE HAD 2 OPEN KNEE SURJURIES TO REMOVE A BUNDLE OF DAMAGED NERVES. 2-HALF YEARS ON CLUTCHES. THIS CONDTION IS CALLED "RSDS" . I JUST HAD MY 5TH SPINAL CORD IMPLANT PUT IN 12 DAYS AGO. I STILL HAVE PAIN BUT NOT TO DEGREE I HAD WITH OUT THE IMPLANT((MEDTRONIC SYNERGY EZ 7435 NEUROSTIMULATORS)) DR.S FIRST THOUGH THEY WOULD HAVE TO AMP. MY LEG. (SYMATHIC NEVRE DAMAGE)
DR.PRICTHARD AT UAB THE BEST DOCTOR I HAVE HAD DURING THIS 18
YEARS
E-MAIL ME --GARYPARK13@AOL.COM
1800UAB8816
IHOPE THIS HELPS SOMEONE!!!!!!
God Bless All who suffer in any kind of pain. I was hurt at work from lifting an industrial sized power washer. After months on pain killers I was fed up. The orthopedic was generous with meds, but I wanted to be fixed. I had to ask for the MRI and he said ok. When I returned with the images the doctor's jaw dropped open and he told me I have a herniated disc. Went through all the pain management drugs that didn't work. So I was turned over to a Neurolgist who said I needed a fussion. At that point I knew my life was going to change dramaticly. I had my L4 and L5 fused with screws, plate, rods, and artificial disc. That was 2/23/07. It is now10/15/08 and the pain I went in for is gone by 75%, but my neck tightens so bad that I can't do much. I can do some things like ride a bike, but walking is a pain. I cannot get a job due to this problen and the rehab guy from the insurance company is more a probation officer than counselor. My doctor tells me the neck pain is due to having my trapazoid moved so the operation could be performed. My neck now hurts more than ever. I take soma and that helps but then I sleep a lot. I can take a vicaden without the soma and do things somewhat, but the drugs makes me worry about my liver. I am thankful that I had the surgery, but this new problen won't go away. The insurance company wants me to settle the law suit for 50 thousand. I will loose all my state awarded me if I do. The money would pay off my home, but thats all. I have no other income. I am only allowed to recieve 500 weeks of comp pay and its over for them. That's about 10 years, so I have 8 left. I can't get medical insurance. No one will give me a job. I am in pain. It's the twilight zone. My wife and daughter is my purpose to live. Without them, I am over it. I try not to take the drugs they give me as to build tolerence. That doesn't work. I am at the end of my rope. My lawyer wants me to settle. I don't. I feel I need the medical that was awarded for life. My doctor agrees. This is just a rant as I have no control over what will happen. Life isn't fair to some and I happen to fall into that area. I pray to God for help and I guess God can only do so much. I am lost.
I have read all of the things on this page and I am suffering for 80% of the problemes that you wonderful humans are dealing with. a year ago I went to a doc. that told me he could get me off of narcotics if I would trust him well workmans comp. has to pay for all of my doc. visits and med. I trusted him. it was a mistake, he put me on suboxone and it helped when I was on 5 pills a day then he cut it to 3 and then took away my zaniflex for my migraines that I took with esgic plus, and got rid of my pycicriest I can't spell wel but you get it. I have a nurce with workmans comp. and she and the doc. are working togeather to save the insurance company money that keeps her job. she bring all of her paichantes to him I have to ride 2 hours each way to see him the ride alone is more than my body can stand. I use to have a morphine pump inplant and had it removed because I felt like it was killing me along with all of the other narcotics I was taking at the same time. I have tried to take my life 2 times. but I want to live, I just want pain reife I am not looking for a high that has long passed over the years of using narc.s I just want a few howers a day I can live. I tolded the doctor please do not ever take my esgic plus away from me because it was the only thing that reached my bone pain and stoped my migrains along with what ever pill they put me on but he took everthing that helped my pain away and only gives me three suboxone aday it is not working and I am so depressed I do not eat I was down to 133 lbs. in less than 10, mo.s I was 289 ten mo.s ago. I have started cutting myself and so depressed I don't know if I will make it this time I am living alone except for a friend that is trying to help me but it is a load on his emothions be cause he cares about me. I need to have a drug uren test in 5 days and I wonder if any of you know how long eagic plus stays in your urine. I have gotten some thru the mail I just can't go on like this if you have the answer to my question please let me know as soon as possiable I need to know. and it you need support to talk about any thing I am hear for you I have just about every thing wrong with me you can think of and have tried to kill my self and lost 2 children in death I am going threw a devorce after 38 years of marriage and was sexulliy abused for 10 year by a male man in my family and dezerted by my real dad at the age of 5 so I know alot from living it and that is the best teacher. love to all of you
I hit my head under the cash register at work August 15,2006. i got a headache and some dizzyness well they sent me to a doctor he said i had a cuncusion and a contusion. i also had spasms in the right side if my neck and right shoulder he said i strained them when i hit my head .
I went for therapy for it through workers comp, but when my time was up they had to stop my therapy sessions.I still have migraine's so i guess i still have a strained neck and shoulder . When should it go away ?
Being a sufferer of perephial neuropathy for many years, I can really relate to those with severe chronic pain. My VA doctor is a wonderful and caring person, and a perfect lady. She has put me on hydrocodone 10/500 2 every six hours and it helped for awhile, but now it seems to only help a little. I haven't talked to her obout med options yet, but i'm sure she will make changes that will help. Can anyone tell me what the next step up from loritab might be? I'm willing to take about anything to ease this pain even a little. With the hydrocodone there is no high, no buzz, no feel good, no anything. I'm a 64 yr. old guy and I say god bless the lady doctors who I think really care. If anyone has any Ideas on how to help this horrible condition, please make a comment for me, I am suffering beyond words, most times I can't walk and the prospect of a wheel chair is unbearable as I live alone with no one to help me, and it would be worse than a death sentense. I'm a decent guy with no thought of abusing any medication. If you can help, please write. William..........
I have perif. neuropathy , fibromyalgia and a bad back...the dr put me on a combination of lyrica and cymbalta and it has been a blessing for me...You might ask your dr about those new meds....take care
To people with migraines. My sympathy is with you. My husband has "cluster headaches" and they aren't included in the migraine family, they are actually worse. I cannot begin to explain to anyone because I have never had a headache that wants me to kill myself, but he has. His doctor recommended "Imitrex" but it did not help. Ergotomine and Stadol and oxygen, right away, do help. Just a thought for anyone with terrible headaches. God Bless and good luck.
I suffer from numerous joint problems. SI joint keeps popping out and it resticts me substantially with severe pain, to the point I can not sit. In turn, causes Siatica problems. Both CMC joints (thumbs) have disconnected, 1 repaired with little improvement and limited movement. The other was refused to do surgery, stating something else is going on with you. Then I was referred to a Rheumatologist, and all they did was ask questions and state that I think it is structual and there is nothing else I can do for you. I also, saw a Podiatrist and a knee specialist for prolems with both and they also think something else is going on.
My left shoulder dislocated over 200 times within 15 years and I had it repaired, now I have severe tendonitis with pain.
I went to Physical Therapy and a Chiropractor with little relief at the time only. Once I stopped, pain came back fully. I currently take Naproxen and Vicodin with no relief. I am at my wits end. Any advise would be appreciated.
Have you seen a orthpedist?....they usually take care of joint structure problems...
I am 21 but i have been in and out of the hospital 4 times in the past month and they can't find anything wrong. I am suffering from severe stomach pain. I can not eat, sleep or do much else. I have lost my job due to all the hospital visits. I am also currently passing blood in my bowels and through throwing up. I have been seen by 4 different doctors and they tell me that there is nothing wrong. I am at a down fall and not sure what to do next.
I had lumbar back surgery in July, the pain that I was having in lower back is gone, now I have developed another problem. My SI jonits are killing me, the bone pops out and the pain is really bad. I take Norco 10-325 mg every 4 to 6 hrs. and Flexeril, my question is; will this condition get better, I don't think I can go through another surgery.
Thank you,
Jackie
Search for Doctors that service in the field of Palliative care. They understand better the long term care of extreme PAIN!!!! And they understand the medication better as well as the doses necessary. Most MD folks don’t have a clue and are afraid to create or promote a JUNKIE. Keep in mind you (if you take prescriptions narcotics) a drug addict. I know it is not nice to hear but true. Maybe neither by choice, nor do you score at the corner drug dealer but bottom line is the same you are a drug addict. This said the doctors that service Palliative care understand this better than almost all others. I suggest that some of you look into Methadone as a long term pain killer and try to get away from the breakthrough drugs. Hot baths, compress of alternating HOT and cold go a long way to deal with break through pain.
I have been here for 18 years now and understand very well. Keep in mind those who live North close to Canada they sell other OTC then here in the US. Same true for South Mexico has different stuff as well.
Keep in mind the Mid-west area of the US is really uptight about prescriptions drugs and long term users. Try California, New York
Good luck, your friend in the battle for happiness in a painful life. I keeping telling myself it could be worse. And it has been, at least I feel ……….. when I stop feeling then what?????
Jerry
my boyfriend suffers from chronic migraines. Is there anyway to help the pain without meds? He already has a weird immune system and I really want to help. I have the most ungodly headaches as well, mine are m.s. related and I know that there is no cure and the meds they gave me do not help at all. please if you know of anyway to cure migraines without meds email me at inmemoryoftoebe@yahoo.com. Thanks
Has anyone or does anyone know if Vicodin Oral can cause ED- I am 45,
up till I met my current GF, had great sex with my partner!
I take Vicodin Oral once in a while for pain, I took it one night before we made love & could not hold up my end as it were?
I suffer from headaches and sometimes migranes, right now i have a migrane but it has been going on for 3 days... anyway to take away the pain or to dull it down a bit, cuz looking at the screen is just making it worse, and i feel like im about to barf because my head hurts so bad. Any ideas??
I have had a headache every day for a year and half. I had neck surgery, which did not help. My elbow aches and now I'm told I have arthritis in my back. I've been to 10 different doctors which all say my head is fine. I know my own body and I'm telling you something is wrong with my head.
Can arthrits cause headaches? If so what kind of arthritis?
I have degenerating disc desease in c2-c3, c3-c4, and c5-c6. I am taking roxicodone 15 mg 2x daily, oxycotin 15 mg 3x daily, clonazepam 1 mg 2x daily, and cymbalta 30 mg 1 at bedtime. What exercises can I do to help me. My doctor gave up on me because of my stress and permanently disabled me. with so many limits of what i can do no one will hire me. I want my life back. To do some exercises to help me quit smoking. I will be trying the steriod inject on c5-c6 and facet blockers on c2-3 and c3-4 in a month or so. any suggestions? I want my life back.
I just read your post. This is my life. In May 2001, I injured my back. After seeing countless drs and numerous physical therapy visit that didn't help me at all. In Jan. 2005 I finally found a dr that treated me,He told me then I needed a 2 level fusion in y lower back at levels L3-4 and L4-5. I had the surgery in Jan 2006. It was a very long recovery process and my family stood by me every step of the way. I still have pain, specially on cold, wet days (living in CT. thats often) but nothing like I had before surgery. Before my surgery I was on many different medications, from muscle relaxers, anti inflamitory, anti spasm, and pain meds. I had MANY trips to the emergency room because the pain was SO severe, they would give me a "fentynal" patch for pain, and that left me in a continuous fog for the 3 days you are supposed to wear it. I have kids to tend to and that was not the answer for me. My life is not the same as it was before I hurt my lower back, and I dont think it will ever get back to "normal". But I am learning to deal with the chronic pain I still feel everyday. Take just one day at a time. You are all in my prayers and thoughts. Dawn in CT.
My daughter is 33,move from a big city, upon reciving her things from the storage, she started breaking out with scabbies. So the doctor says. But no test have been made on her skin and she keeps breaking out. This has been going on for 2 months. She has been using over the counter things, washing and boiling her bed cloths 3 times a day. It is worring me to no end. I have taken her to 3 doctors and they keep giving her the same thing without any test done on her skin. Is this the proper was to go about this sort of thing. cat23
I suffer from terrible migraines and have tried so many medications that don't do anything. I am trying to find a doctor that does Botox injection. My insurance does not cover the shots so I will be stuck paying out of pocket. Has anyone tried this method?
The past few weeks my foot buttom mostly the arch of my foot and my calf been hurting. The pain feels like a Charlie Horse pain, but it's not Charlie Horse. The pain comes from nowhere and mostly in the evening ,what do you think it is?
I get ocular migraines from specific things. Ocular migraines are when you see the scintillating lights and ziggly silver lines in your vision (caused from a pinched ocular nerve).
1. Looking directly into bright light
2. Eating too much sugar
3. Drinking too much caffeine
If I feel a migraine coming on, I immediately take 2 aspirin and 1 tylenol and it clears it up. I won't see the squiggly lines but I might still get a headache although it's not as bad as without taking anything.
You need to know WHY you are getting migraines if possible. Do you eat properly? If not, it's common sense that you must start.
Do you get enough sleep?
Are your hormones balanced?
Are you stressed?
Are you overweight?
Are you diabetic or insulin resistant?
You need to get at the ROOT of the problem -- and solve that problem.
Migraines are a SYMPTOM of something else going on in your body.
SUGGESTION: Go to a compounding pharmacy and see if a pharmacist will give you a free consultation and/or recommend natural supplement.
3/2009... oh my ... I can't believe I found this site.. I had an accident in 2005, wasn't diagnosed w/ RSD til,2008, been sent here and there,passed on from one dr. to another like you folks.. so glad to find you.. I too have been called hypochondriac... I knew there was/is something wrong with my shoulder.. a light fixture dropped on it at work.. couldn't figure out what in the world to do.. now I know.. nothing to do.. only hurt... but one thing has helped some, a good bite actually, 600-800 mg. of Lyrica and muscle relaxers.. makes me feel ''really bad'' but it did help for a while.. then, pain bled through the med.. don't know what will happen next... but I was sooo relieved to find out what was going on... and reading all the comments you have here, I know exactly what you mean.. and I understand... thank God you folks are out there, sorry for your pain..I am trying to find out what sympathetic nerves are, I've checked out WebMD, but no info there... my pain feels like it's miles deep...and far away, and like broke ribs, and like tearing muscles, and on and on and on.. it's been almost 4 years now and only changes, never goes away, my dr. said it will never go away...
How long does valium stay in your system?
I NEED HELP FAST!!!! PLEASE,if there is anyone in the northshore area I need a pain doctor who isnt afraid of pain medication. Ill make this as short as possible. On Feb 08 I fell in Dunk's and severely tore my rotator cuff, I was told three out of four tend. were torn, and it would be very difficult to fix if possible at all. Well who I thought was my miracle Dr. told me he had fixed it and I would be ok. Well Im not. In fact it started when the anastegis put a so called pain blocker machine on me before sergery, which I passed out from the pain from him and the nurse not knowing what they were doing and it felt like my arm was on fire. I know im not being a baby there hands were shaking worse than you could imagine for a doctor who is about to do surgery on me in a min. ok short well after the first follow up visit I told him I was still in pain and he said it was normal but to do the exercises he gave me at the beginning. I tried to but I just couldnt lift my arm. I know what it should of been like by this time I had had my right shoulder done 6 months prior. I knew something was definately wrong. It took me almost 4 months to convince him to do another mri on it, cause he thought I was being a baby, but believe me Ive been thru much worse surgeries than this with out half the problems or pain. When I called for the results he told me everything looked fine. I was confused, and nervous, what the hell was wrong with me. So I lived on pain meds which trust me no one wants to give even if your dying. I finally found a surgeon at Lahey clinic to look at me and my mri and made me take another. To my unbelievable surprise, not only did the mri my original doc. took said that get this the surgery went well but my rotator cuff was totally deteariated. WHAT??? I dont get it. How can the surgery go well but the shoulder has lost more than 60% mobility, and there is nothing besides a shoulder replacement which NO doctor will do on me becaue Im to young. Yah right, im 40. Anyway sorry this isnt to short but coming to the end. After all this mess my surgeon decided he didnt need to see me anymore nor give me pain meds. Didnt he know being on ms contin and 15mgs of oxycodone 2 every 4 hours for break thru pain would send me into instant withdrawals which was worse than the pain in my shoulder. I couldnt find anyone to help me. Everyone looked at me as if i was a drug addict. What didnt they see my reports what the heck is there problems if they monitor you closely there shouldnt be a problem, i know my tolerance is sky high but is that my fault? I took what they gave me and it took the edge of the pain. Finally a shrink gave me Fentanyl patches we went up and down on the doses weekly because it was difficult to find the right dose. Either to weak or they got me so depressed I was suicidal. So now they will not switch me to another drug so they are taking me off. I get punished again for being hurt. I was taking 2 100mcg patches every 2 days, and if they fell off I would open them and drink the gel so as i thought it would go to waste because no way could you get those one day early. Big mistake doing that dont ever do that please. Not only could youi die of overdosing, it is much much harder to get off of. I just started last Friday coming off of them with 1 100mcg patch for two days then 1 75mcg for 2 days then tuesday cause i cheated on monday with other drugs i will take the 50mcg. Then I see the doc. wednesday. I am horrified will I be ok will I go thru unbelievable withdrawals Im scared Ive gone thru them before and they are almost unbearable. I cant find another Doctor to help me in my area that takes network health and even though my shrink put me on these stupid things he decided there not working out and He wants me off, but if I freak out he will admitt me into a detox. what the hell did I do wrong to deserve this? I didnt take to much and ask for more or early refills, If anyone knows any Doctor that would be willing to help me even get off these things with something else like methadone or whatever they detox people with I would do that I have 2 boys I have to care for there my life. I have an abusive exboyfriend I cant leave while I am sick. He doesnt abuse my boys or he wouldnt be around at all!!!!! So please if you can help me with some comfort about the withdrawals and if thats not possible tell me the truth and if you have any docs. in mind please email me. I cant go to a detox I will lose my boys, there father is just waiting for me to mess up to get them. I cant let that happen. Thanks for reading this short note. LOL. Im sorry Im just scared. and in pain.
Thanks,
Kim
Does'nt it Suck that noone understands how bad it feels and docs do nothing but roll their eyes.I'm pretty sure whatever is giving me the worstening headaches is gonna kill me,I'm putting in my will the names of the doctors that ignored me so they will have to answer for thier actions,Or inactions as it were.
Hopefully they will start doing thier JOB!
I can truly feel all of your pain and frustration I have been a chronic pain patient for many years, and I have a Doctor that thinks it is time for me to go cold turkey. He knows all the surgery's I have endured and the struggles I have from day to day. He says that it is a mind thing and I need to deal with the pain. So he started cutting my pain meds back and cause a reaction of migraines to reoccur. That wasn't a smart move says my new Doctor of Neurology. Now this doctor has to figure out a way to control my migraines and convince my old doctor not to take me off my meds just yet due to the reaction my nerves and body are now experiencing. What am I to do now, wait and play the lab rat, or go another route.......
CONFUSED AND IN PAIN
For the migraines, I have found that if I take Excedrin Migraine, as soon as I feel one coming on, it helps a lot. I use this when I can't afford the Treximet.
I am a 62 year old lady, who is all too familiar with the "I AM GOD" syndrome of doctors today.
To all you migraine sufferers, FIND A GOOD CHIROPRACTOR! IF HE HAS A MASSAGE THERAPIST IN HIS OFFICE, ALL THE BETTER! MANY CHIROPRACTORS WILL WORK WITH YOU EVEN IF YOU HAVE NO INSURANCE.
Ever since I was a child, I experienced pain, headaches, migraines. I've been diagnosed with fibromyalgia and arthritis. About 20 years ago, I had a bout of vertigo for a 5 year period. Went to all docs, did all the tests,(even a cat scan) had surgery for a deviated septum. They prescribed antivert...one dr told me it was all in my mind and wanted to put me on traquilizers. As I got progressively worse and the tests turned out negative for middle ear problems, I asked the last ENT if it could possible be a residual effect from being rear-ended by a drunk driver years before (I had whiplash). He told me I had nothing to lose by checking it out. At that time the attacks were lasting 4-5 days and the only way to move around was on my hands and knees. One visit to the chiropractor anytime I had an attack put me back normal in 2 hours. It seems that a small vertebrae just below my medulla would kick out of place when I would place my head back and raise my arms; i.e., washing a window, using the broom on the ceiling to remove cobwebs, etc.
Several years ago, my knee was so painful, injections, braces etc. did not help. I found a SPORTS CHIROPRACTOR who was able to manipulate my knee to the point where I have no more pain!
I have seen a chiropractor for 20 years now...every two weeks just to keep me pain-free. No more migraines, my fibro is tolerable, no knee surgery, no vertigo attacks for the past 10 years!
I was diagnosed with small cancer last July after 6 months of being misdiagnosed for anything from TMJ to GERD. My oncologist at Mayo has told me that without her help, I would have died before Christmas...I think she expected me to KISS HER RING! Isn't that her job? After 4 chemo treatments, 31 radiations, 3 hospital stays, neuropathy in my foot and hand, 4 blood transfusions, an arterial blood clot in my leg for which I needed to have my femural artery unblocked; more cancer has shown up in my adrenal gland. When I told her I wouldn't do more chemo, she told me she would "make me comfortable" at the end. Yet, when I needed more Adavan, she refused to renew my prescription for 1 MG at night to help me sleep and deal with my neuropathy since I was no longer in "therapy". I met several "I AM GOD" physicians at the Mayo; neurologists, surgeons and even the PA's have similar illusions of grandeur. This oncologist completely ignored my leg pain and the subsequent neuropathy. I have now sought out another oncologist who wondered why another PET SCAN hadn't been done since last July since this is such an aggressive cancer. The Mayo doc also ignored my rising glucose, which I discovered when I asked for my medical records. This could have been the cause of the neuropathy after my first chemo treatment.
FOR THOSE WITH NEUROPATHY...MY NEW ONCOLOGIST PRESCRIBED FOLBEE TABLETS (A HIGHER DOSAGE OF FOLIC ACID THAN IS AVAILABLE OVER THE COUNTER. HE SAID I WOULD NOT SEE AN INSTANT IMPROVEMENT, BUT IN A FEW WEEKS, I WOULD HAVE LESS PAIN AND NUMBNESS...TIME WILL TELL.
During all my treatments, I allowed myself only small amounts of morphene
(I have enough on hand to take out an elephant)and an occasional Advil. I was not allowed to see my massage therapist or chiropractor (radiation and chemo weakens the density of the bones). With the cancer and the fibro, I was in pretty bad shape...my saving grace was my sense of humor. I decided very early in my diagnosis to SMILE THROUGH IT ALL. I set small goals...attending a wedding (in a wheelchair), attending the boss's Christmas party (less than 2 weeks after my femural artery surgery). Showing up at the office 3-4 hours two days a week since January(great for the mind, exhausting for body).
Yes, the pain is overwhelming at times, but
I only have a little time left...I want to LIVE that time with family, friends, clients and associates without being drugged and capable of making a wisecrack to make THEM smile when they're around me. They won't be crying when my time with them is over...they'll remember me as someone who made them SMILE. Some have told me I'm an inspiration, many have told me they will pray for me...I just want them to remember me when I'm gone.
I learned very early in life, NO ONE wants to be around someone who cries all the time. No matter how much pain you may be dealing with, if you talk to strangers, take an interest in their problems and offer help in some way(even with just a smile or a kind word), your pain seems to lessen.
When I finished my chemo just before Christmas, I showed up at the nurse's station in a Santa hat bearing a bucket of chocolates. Such a small thing brought so many smiles! Can't express how great I felt!
I'm not looking for kudos, just trying to help by expressing how you can LIVE in spite of the pain!
By the way, I am back at the CHIROPRACTOR'S getting my massages and adjustments. The pain is still there, but much more bearable. Still have the morphene, but I like my independence, so I take an Advil instead so I can drive.
I realize this is such a lengthy post and many will skip over it, but I tried to address several issues in the many other posts. This has been very cathartic...I've even stayed up way past my bedtime, but if this little synopsis of my life helps just ONE PERSON, it was worth every sentence.
Thank you for taking the time to read it. REMEMBER TO SMILE! IT'S CATCHING!
I'M ON FACEBOOK...
Angela M Szabo
Phoenix, AZ
Please, please consult a qualified Rheumatologist if you have chronic pain. I had been told I had RLS, arthritis, Fibromyalgia and CFS by different doctors by the time I was 30. I was on five prescriptions with no relief.
My Rheumatologist ordered an MRI and discovered I have Spinal stenosis from an old skiing injury.
I no longer have ANY pain, take no meds and have had no surgery. I manage my symptoms by taking vitamins and herbs to combat inflammation (Vit C, B, cinnamon, garlic, Grapefruit seed extract). AVOID SUGAR-increases inflammation and pain. Eat a Diabetic diet, no sugar, yeast, wheat or dairy. All vegetables, chicken and rice, etc ok. Also, drink mineral water only. I use an inversion table I purchased for $150 at JCPenney.com (cheapest I could find, but you can buy them many different places) and if I flare up it stops the pain within minutes.
This is a lifestyle change that will save your life. My brother in law overdosed on pain meds because he couldn't find relief after a logging accident. He didn't make it.
I am now 42, and have been pain free for over 5 years by following the above. My Rheumatologist wrote and published an article on me because I am quote "in remission".
Please try my suggestions, they are not expensive, don't require a doctor or prescription. They will help with migraines, too.
Good luck!
My husband has been dignosed for over 9 years. Many times he was told that it was all in his head. we moved to Texas from New York. Found no pain management for RSDS. We both became very depressed. He was given Hydrocodone along with a multiude or other meds. It seems that our lives have come to a schreeing halt because he can not do the things he use to do. We have been married for 38 years and it just seems that I have taken care of him for s lot longer. Is there any spouses that feel the same way? Any ideas on not feeling so depressed?
I can't believe the lady that said it seemed like alot longer taking care of him. Well I have RSDS and I took care of my wife until the day she died of cancer. Love is for better or worse, in sickness and in health or don't you rember? I just can't believe you could even say such a thing.
I have been suffering from Kidney Stones, Intersiticial Cyctitis and IBS for over 13+ years now. I started on pain meds b/c of this and I have reoccuring Kidney stones atleast once or twice every two years. I've tried everything from: Vicodin, Perks, Perkadane, Ocycotin, Morphine, Diladid, and now Methadone. I've been to dr. after dr. after dr. and atleat 50 different hospitals, all they keep on telling me is that IM ADDITED!! There's a differenc between being addicted to drugs,abusing drugs or and having a medical having serious medical conditions thats require you to be on pain medication the rest of your life. Methadone has helped me tramendously. i make sure I stay at a low dose I don't abuse it. As far as the IC (Interstitial Cystits) goes I've tried everything to, they have a new medication out called CYMBALTA....it works for pain, and every symptom that comes with this diesase. The Urologist had me go into the office every 6 months on top of the medication to put put something called (DMSO) its like a cocktail od drugs that make the pain, crampin, ect go away instantly. IC is a condition where you don't have liner over your bladder and all the acidic acid in your urine goes where the liner of ur bladder should be and it does feel like someone pouring rubbing alcohol overan open wonud but worse, and it comes and goes when it pleases, you never know when it will happen. But the only thing I've tried that actually works is CYBALTA. If anyone know a doctor that perscribes Methadone please let me know, I'm tired of driving over and hour EVERYDAY to get my medication. THANKS E-mail me at Angielbaby06@aol.co.
Hello,
I just wanted to say your blog felt like you had peeked into my life and told my story. I am dealing kidney failure and now surgery to correct my scoliosis. I wss born with Spina Bifida and given not much chance to thrive (according to my doctors). I am 26 and my struggles today are harder when there are heartless doctors who look at you like you are a pesky fly or simply a part of the furniture in the doctor's office. Telling you that you're going die like one might say they forgot the milk at the grocery store. I am sadden my the lack of humanity of some doctors. They try to tell you what you are feeling and act like you don't know you're own body. I walked around with what I knew was kidney stones (it happened to be 20 of them) and was vomiting nearly three weeks straight out each month for about a year losing 15lbs (I went from 95 to 80lbs). I have yet to gain it all back. Then I went to the Mayo Clinic where they listened and treated with respect. They didn't treat me like a helpless woman in a wheelchair, but a young college woman who was just trying to get her pain under control and her life back. I have found a group of doctors also at the U of Miami who are going to get to the best pioneering spine surgent in Florida. They believed me, were honest with me, and validated my pain and the reality of my life. I, too have learned that I must educate myself, know all the medical terms, ask my questions, and be able to tell them things they may not know. Life is journey and there is always another mountain to climb. With chronic pain sometimes I miss out on the journey wanting to arrive at a pain-free destination. I know now that may not happen, but with God, great doctors, and my faith I will enjoy the journey, stop and smell roses, and rejoice in every moment that God gives me on this wonderful Earth He created until He calls me Home. God bless you all and thanks for listening.
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