Fibromyalgia And idiopathic disease are not terms for "go away". They mean "I've tried what I can think of and theres no further testing we can recommend" Notably, a positive punch biopsy for small fiber neuropathy IS diagnosis with treatment that works fairly well. Ideopathic simply means that the base cause is unknown. The author need to educate themselves further about what doctors can do and what words mean. He h…
I had to battle with my neurologist to get a skin biopsy, despite very clear symptoms of neuropathy, and a very clear trigger.
He eventually ordered it, very reluctantly. It came back normal, which for him for conclusive proof that I had fibromyalgia.
When I asked him about fibromyalgia, it was immediately clear that he literally had no idea about it - when I said that it disproportionately affected women, he actually laughed at the idea. When I said I didn't have pain in the tender points associated with fibromyalgia, and I didn't have flare-ups that are typical of fibromyalgia, he just filibustered. It really was his way of saying "I dunno, you're probably a wacko, go away".
I did a lot of reading of papers, and was convinced I did have small fiber neuropathy. I requested a copy of my medical notes and discovered 2 very interesting things - firstly, the neurologist was indeed convinced it was all in my head, that no physical cause would ever be found, and he'd influenced and biased other medical professionals I was involved with by telling them this at every opportunity. Secondly, the biopsy sample had been taken from the wrong place, and had later gone missing - there were no results!
I insisted on another biopsy, and sure enough it found small fiber neuropathy in my arms and legs. He didn't even apologise for what I see as clear negligence.
In the author's case, he had a biopsy diagnosis from the US, but said the UK docs didn't accept that, and he doesn't even have any pain meds - he absolutely should outright dismiss that in anger!
My advice for the author: you're in a profession where you can afford to self-fund private healthcare - put aside principles and just pay to see a private neurologist. If needed, they can repeat a skin biopsy, and you will absolutely not be left without any pain meds.
For neuropathic pain, the best pain meds for most people are Gabapentin, Pregbalin and tricyclics. If those don't work, SNRIs such as duloxetine, might. Opioid medications don't work well on neuropathic pain for the majority of people, but can help some, especially if nothing else works. Sativex (basically a cannabis tincture) also helps some people, and is very easy to get privately now if you have proven SFN (let me know if you want to try this and I'll tell you where to get it).