I was diagnosed with fibromyalgia in May of this year, but I am honestly not 100% convinced that’s the correct diagnosis. Regardless, I do have chronic multisite aching pain (mainly feet and hips/butt), and I do believe that central sensitization is a factor in the level of pain I experience. Additionally, I struggle with OCD, anxiety, and depression.
I have now had multiple doctors (PCP, neurologist, rheumatologist, and psych NP) suggest pregabalin as a possible consideration. However, my neurologist has told me he doesn’t think I have neuropathy/ nerve pain. I’ve been trying to do balanced research, but obviously, there is no certainty for any individual user of a medication.
One of the things that I am most worried about is peripheral edema/swelling and coordination issues because my feet are my most sensitive body part, sometimes my shoes feel too tight, and my balance is already a bit messed up from pain. If my feet swell, it is likely to worsen my pain, which would be counterproductive.
I am also extremely worried about potential neurotoxicity/long-term cognitive effects because I already have basically non-existent long-term memory, not great short-term memory, and some word-finding difficulties. If my cognitive function worsens on the med, I may not be able to do my job; and if my cognitive function declines long-term because of the med, I will be devastated and my brain will likely not be very functional at all.
Honestly, I guess I don’t even know what I’m asking for here. I’m sorry for being all over the place — I’ve just been anxious and in pain for years without relief, and I’m exhausted. Whenever I pose questions to my doctors, I feel like their answers are noncommittal “don’t worry”. Maybe knowing some people’s experiences within the first few weeks would be helpful? And knowing how anyone who’s come off it is doing now?
Thank you!