For years, we’ve assumed that Tim’s pain was from arthritis. Unless it’s rheumatoid arthritis, there’s not much to be done medically, so we didn’t really pursue the issue with his doctors.
But Tim’s recent denial spurred us into action.
It’s nearly impossible to prove that the lack of a job (and stress in general) is what’s keeping his eczema from flaring. The awful dermatologist visit proved that.
But we could document the arthritis, thereby quantifying the pain for the SSA. The SSA that, in the denial, referred to Tim’s pain as “some joint discomfort.”
Except that the orthopedists didn’t find arthritis. The best we got was that tissue around his knees can become inflamed, and there was some minor degeneration in his lower lumbar.
That doesn’t adequately explain Tim’s condition. Despite a very high pain threshold, he’s pretty much constantly riding a spectrum that ranges between extreme discomfort and “ohgodmakeitstopmakeitstopmakeitstop.”
He hurts when he sits down, stands up, walks for a more a few minutes, stands for more than a few minutes, bends over, squats… You get the idea.
Meanwhile, physical therapy has been doing more harm than good. Even relatively mild exercises cause a lot of joint pain. Then he’s sore for three to four days afterward.
So off the rheumatologist we went. He ran some blood tests to rule out certain conditions. Then he confirmed what I suspected: Tim has fibromyalgia.
Tim’s not thrilled about the diagnosis, which puzzles me. Nothing has changed. It’s not a degenerative disease. It’s just a description of what he’s going through.
A much better one than arthritis. People sympathize with the pain, but I suspect that they also think, “Dude, just take an Aleve.”
Fibromyalgia on the other hand… People take that seriously. And those who don’t, well you just kick ’em in the shins. Or some place higher up and softer.
So to me, the diagnosis is a validation — to others and to himself.
You can know that your symptoms are real, pervasive and debilitating. Still, every so often (especially pre-diagnosis) a voice asks whether maybe, just maybe, you’re malingering.
Now that he has a name — a pretty serious one, at that — for his symptoms, I hope he never questions that again.
Finally, and on a more cynical note, this should help significantly with our appeal to the SSA.
So where do we go from here?
We’re waiting on a prior authorization, and then Tim will start aquatic therapy. It’s basically just physical therapy that takes place in the water — same emphasis on strengthening, less stress on joints.
And of course, we’ll discuss medication options with Tim’s PCP.
Apparently, only 30% of patients see any benefit from fibro meds.
Others have found that anti-depressants and anti-seizure medication helps.
What we have to remember is that none of this is a magic bullet. Medication and exercise may ease his pain, but they won’t banish it.
So we’ll continue living our modified lives day by day: me for fatigue, him for pain. As I recently joked on Twitter, we take it day by day. We figure out who feels worse, and the other person has to run the errands.
Do you know someone with fibromyalgia? What medications help? (Change in diet isn’t an option.)