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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147 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 "physic