Hi, I’ve only known I had FM for about 4 years, since my lymphoma diagnosis and chemo (which may or may not be related to the FM onset?), and I’m 58, which I know is a bit old for onset of FM. I also suffer from treatment resistant depression which I’ve had almost my whole life. Anyway, about 4.5 years ago I stopped working due to a new, more severe depressive episode, shortly thereafter was diagnosed with lymphoma, then shortly after that had chemo. The chemo ended up causing a heart condition (CHF), and then I started having symptoms, coming on gradually, of arthritis and FM. I saw a rheumatologist at Stanford for about a year, who only diagnosed osteoarthritis . Stanford apparently does not “do” FM diagnosis, or at least that particular doctor did not, even though in retrospect I was then as now having pain in all 4 quadrants, in muscles as well as joints. Anyway, now I have all the symptoms of FM: the significant chronic fatigue, the chronic significant widespread pain, and the brain fogginess/fogs. I have had several significant flares and what I call mini-flares. I never ended up being able to go back to work (I was a physical therapist), and know I could still not work at this point. I have pain in both shoulders, upper arms, elbows, lower arms, hands, fingers and thumbs, my neck, mid and low back, both hips, thighs, knees, and sometimes lower legs and toes as well. I still deal with depression and the fatigue, which I am seeing a good psychiatrist for; we keep trying different meds and combinations, which sometimes help, mostly not much. I struggle to not spend all or most of the day in bed. It is hard for me to get out of the door, and sometimes to the door, mostly due to the feelings of major fatigue & weakness, as well as the pain.
The better news is that finally my pain is semi-controlled. I am using CBD capsules (cannabis, now legal here in CA, before that I was using it medically). The CBD helped me get off opiates (norco, 3 x/day). I now only take the norco when in really bad pain. I need to take 1 gm. of tylenol 3 to 4 times a day/night however to control the pain. I am also on lyrica, 200mg 3x/day, which I feel helps, but only some. Also using cymbalta for the pain and depression, which I feel probably helps both somewhat. With all these meds my pain is what I would call manageable most days, unless in a flare. Yet it seems to be easy for me to flare, such as long car drives (back, arms) or most forms of exercise particularly even a “senior” exercise class.
A new med my psychiatrist and I are experimenting with in order to deal with the brain fogs and low energy is long acting adderall. I previously tried short acting ritalin and adderall but could not deal with their side effects. I only just started the long acting one, am slowly titrating up the dose. It has not yet helped but stay tuned.
My husband who was my caregiver died suddenly 11 months ago, which was a big blow. I now live alone. I have no kids and I am living semi-rurally in a newish area (my husband and I moved north of San Francisco, where we used to live, after my cancer treatment.) I really have no friends here, on account of not going out much.
That’s my story for now. I am interested in hearing from others mainly who cannot work due to their fibromyalgia for now. Thanks everyone.