Well said but easier said than done. Can you recommend some resources that might help with that or maybe a thread here? What to do and maybe what drugs to take?
Sorry, I'm not an expert on cramps or joint pains, since I haven't had them. The subforums on symptoms and treatments might have something useful for you. My main suggestion is to keep a good food/activity/symptoms journal and practice paying attention to changes in your symptoms. Human memory is too fallible for this. I've found some things to avoid by searching back in my journal. The journal allows you to verify that when you write down "very brainfoggy", it's usually preceded by "...and potatoes" or some such thing.
I've tried lots of things that, according to some theory, should have reduced my symptoms. Instead, they did nothing or made my symptoms worse. I no longer get all that excited about such theories.
![Roll Eyes :rolleyes: :rolleyes:](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
The things that worked best for me were usually accidental discoveries, of things that were already in my kitchen. I'd notice that I felt better than expected one day, so I'd check my journal to see what might have been responsible. Sometimes it would remain a mystery, but sometimes I'd find something that would work repeatedly. Of course, with ME, most of those only worked a few times and then stopped working, but a few times I found something that worked reliably for longer.
I'm also less of a fan of actual pharmaceuticals. None are designed for ME, so there's no reason to expect that they will work for ME. LDN did block my neuropathic pain very well, but that's the only pharmaceutical that did work well for me. A couple of commercial supplements (T2 and carnitine) worked well for a while, but others were useless. One herb (cumin) worked really, really well, blocking and then curing my PEM. Some other herbs had minor beneficial effects, but they only worked for a few days or weeks, then stopped working.
Herbs and supplements with claims for being good for cramps or joint pains probably have a slightly higher probability of working for you than herbs and supplements chosen at random from a health products catalogue, but I wouldn't consider them to be high probabilities. Unless you can figure out
why you get certain symptoms, you can't know
which theories to apply, so there's not much point in trying expensive or high chance of side-effects products first. Some of the cheap herbs, foods, and supplements have a chance of being something that will help you, so you can give them a try. You've learned to avoid certain herbs spices, but there are plenty of others you could try. If your kitchen is a bit sparse, you could ask a friend or neighbour for small amounts to experiment with. Maybe you'll get lucky and find someone who will actively participate, thinking of you when they buy some unusual foodstuff, and offer you a bit. Maybe some uncommon Gualtemalan fruit or Vietnamese condiment will be an amazing treatment for your symptoms. I would never have guessed that cumin would be an amazing treatment for my PEM. I still don't have a theory for why it worked.
Benadryl just made me groggy, but didn't help me fall asleep. Horrid stuff (for me)!
Elderberries were a surprise discovery for making my symptoms worse. It's an immunostimulant, so I suppose it was supercharging my immune system, and since immune system activity seems to cause most of my ME symptoms, it's something to avoid. However, if you really want to test whether immune system stimulation makes your symptoms worse, give it a try. Most of the immunosuppressants I tried had no effect, but I think that's because they didn't work on the brain's immune systems, or my baseline severity is with the body's immune system relatively quiescent, so suppressing it further wouldn't help.
I believe that for most of us, there are are treatments that can be found. The problem is in finding them. Think of those individuals who spend their lives wandering around in tropical rainforests, hoping to find the basis for a new antibiotic or other pharmaceutical. Is it in this leaf, or that tiny patch of mold on that specific species of beetle, or the root of that drab-looking plant?