throwaway584568

I have small fiber neuropathy, with de-mylinated peripheral nerves. I tried lion's mane (amongst many other things), but it didn't help.

I'd made sure t get one that was comprised only of the fruiting bodies, with a tested percentage of polysaccharides.

> The doctors were completely dismissive of and uninterested in the symptoms

I had exactly the same issue! GPs ran a few tests and couldn't figure it out. They labelled is as fibromyalgia, even though I didn't fit the criteria. I pushed to see a neurologist, who ran a few tests and couldn't figure it out - he also labelled it as fibromyalgia, even though when I questioned it he admitted he knew almost nothing about it!

There was a lot of back and forth, with GPs and neurologists being really dismissive. I forget how long this went on for, but a couple of years at least.

So I did my own research over a long period of time. I found only a handful of other cases, but with the symptoms I came to the conclusion that I must have small fibre neuropathy. I pushed the neurologist, who grudgingly did a nerve biopsy, which confirmed small fiber neuropathy. He stopped being dismissive after that.

For pain, I ended up with a similar situation. I tried gabapentin, pregbalin and all the usual things like topical capsicain, TCAs, SNRIs, diazepam, opioids etc. They either didn't help, couldn't be tolerated, or caused more problems. Within the public healthcare systems, the list was eventually exhausted, and they weren't interested in trying anything else. They didn't believe how bad the pain was, and were unwilling in any case to go beyond their list of standard treatments. In the end, I paid to see a private pain specialist, and eventually found ketamine to be really helpful - not just with the pain, but my mental ability to live with it.

I don't want to mention it's common name specifically, as this is rare enough that it could be linked to me personally.

It is actually an antibiotic (I'd somehow forgotten that - edited my original comment now!), but once that acts as a immunosuppressant, and it's less-common name is diaminodiphenyl sulfone.

I have a similar story, with an antibiotic that is also an immunosuppressant (I was taking it for that effect). After taking it for just 2 weeks, I had terrible pain in my arms and legs. My doctor suggested I keep taking it for a couple of weeks more, to see if it went away. It got worse, and I stopped it a week or so later. I understand this is a very rare side effect, so rare I don't think it was even mentioned in the leaflet - I'm just incredibly unlucky to have such a reaction.

I was left with small fiber neuropathy (nerve damage) in my arms and legs, and with CFS (Chronic Fatigue Syndrome) too. This means I'm in constant, unending pain (which takes a huge mental toll), that I'm tired all the time, and if I do any more than the gentlest of exercise, I fall asleep and am more tired and in even more pain for days or even weeks afterwards. It's fucking horrible.

This was about 6 years ago, and I'm pretty sure it's permanent. I haven't quite given up hope though - I have several Google Scholar alerts setup, and read several papers every week, in the hope of finding something that might reverse things even a bit.