Pain. It is an important issue that needs to be addressed beginning at diagnosis and continuing throughout the course of the illness. Just like there are some students who need individualized learning plans in order to succeed, my experience is that, in order for them to be effective, multiple myeloma patients need their pain management plan to be individualized as well. I also believe there is a lot to be learned from sharing other’s stories of living with daily pain.
When I was first diagnosed, pain was the indicator of something being very wrong. I had pain in my spine right between my shoulder blades, in my sternum, and in my skull. I was taking over-the-counter pain medication for muscle pain, but they didn’t work. I was very confused about the source of the pain. When I learned that the pain was coming from the disintegration of my bones, I wondered if anything could relieve my pain.
My oncologist immediately put me on a highly addictive prescription medication, which I didn’t really know at the time. She didn’t explain that over the long term my body would become dependent on it and that I would crave more or actually need more as my body adjusted to it. I really think that she didn’t think I would live long enough for it to become a problem. My prognosis was 2 to 3 years. She probably just figured that with such little time left, I should be comfortable and pain-free as much as possible. So, in my naivete, I just went for it and took what she prescribed. It definitely helped with my pain.
After my autologous stem cell transplant in 1998, my transplant doctors had me go to a pain clinic to see what my likelihood was of showing addictive behavior. They determined that I don’t have an addictive personality and that it was safe for me to continue on this drug, as long as I was closely monitored. After the transplant, my pain had decreased significantly because the cancer was no longer actively eating away at my bones, but my body was telling me I still needed to take it. I did not need more, just the same dose I had been on. If I tried to stop taking it, my body would feel jittery and I couldn't relax. I asked my doctor about getting off of this drug and he told me to wean myself off gradually. His advice was to take a half of a pill every night for as long as it took for my body to stop showing signs of withdrawal and then try going off completely every other day in the same way and eventually going off all together. I did it. It was a hard 8 weeks, but I did it!
I was able to go without treatment after my transplant for about 12 years. During that time, I had some bone pain from former damage, which I managed with over-the-counter pain medicines. Then I began to have pain in my lower right rib. They couldn't see anything on the scans, but my pain was so bad that there were times that I couldn't breathe, lay down, or sit in a chair. Because of the scan results, they concluded it was muscle pain and gave me muscle relaxants. While they definitely helped, they didn't touch the bone pain. I spent 2 years in pain, but I began to just ignore it until I saw a different oncologist for my regular follow-up. I didn’t even tell him about that pain because I had begun to have pain in different areas that were becoming a concern. The new doctor asked me if I was having any pain in my right lower ribs. I told him that, yes, I had been having pain there for over 2 years but that all my other doctors told me that it was nothing. He said that the PET scan he ordered showed a large plasmacytoma on the exact spot I had been having pain.
Speak Up for Yourself
I think part -- or a lot -- of the problem is that some doctors have become numb to their patients’ pain, which is made more complicated because people have varied abilities to cope with pain. It is a tricky situation, and unfortunately many people have taken advantage of their health care providers to obtain medication they don’t need. Because I have a fairly high “pain tolerance,” I didn’t go in and repeatedly cry and complain about my pain, so they probably didn’t think it was serious enough to look into the source further.
One of the hardest things for me is that pain is the primary indicator of my disease and its progression. I’m in the 5% of myeloma patients who don’t show a specific protein in their blood. This is the typical way to track the disease, so when that isn’t present, pain is the most reliable indicator. I have told doctor after doctor about pain in various areas in my body and often it gets ignored. “Everybody has pain,” or “it’s probably just an old lesion,” or “it’s muscular” were always their answers. After the situation with my rib, I learned how important it is to not let it go. I have developed a relationship with my oncologist after 8 years so that he takes every report of pain seriously. Sometimes it’s old lesions. Sometimes it’s muscle pain. But it’s always looked into.
In these 9 years since my first relapse, they’ve put me back on prescription pain medicine. I have consistent pain from neuropathy and bone lesions. I only take it at night and sometimes during the day if the pain is extreme. My oncologist often tells me to take more so that the pain doesn’t get out of control, but it’s hard for me because I remember how hard it was to stop taking it. The doctor feels that the myeloma is at a point that taking these drugs is necessary for my overall sense of well-being.
Like so many things with myeloma, or any cancer, pain is very specific to each patient, and therefore, treatment and management should be individualized. It is important to make your voice heard when you are in pain. I always try to downplay my pain, which I know isn't helpful. It’s important to be honest and persistent so that your medical team can make the best decisions with you.
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