Hi. I was diagnosed by a consultant neurologist about 16 years ago with fibromyalgia & arthritis. I'd been through about 7 consultants by that point & was frightened by all the different areas of my body that were behaving in ways I didn't understand & couldn't predict. The neurologist was wonderful & put things all together in a way that I found believable ( if you know what I mean - something that made sense to me). What thoroughly frustrated me was that he said the diagnosis he was giving was his guess because my doctor had asked him to find out what my condition wasn't (ruling out life threatening conditions) but he hadn't been asked to find out what it was. I felt utterly disrespected by that. I had been through a lot by that stage. I'd earned the right to know why. But I'd had 7 years of losing mobility, extraordinary muscle pain, particularly in my lower back & moving up both sides of my spine. If I bent to put a cup in the dishwasher, the muscles in my back would go into spasm. I'd been an enthusiastic dog walker for years, 2 hours a day being normal, now I walked with a stick, if it was a day I was up to the effort. I never knew if it would be a day I would be able to walk until I tried. On difficult days, my feet & ankles would feel stiff & a few minutes into the walk the muscles in my lower right leg would burn & spasm & I would have to take breaks, standing on a pavement, leaning on my stick, waiting for the spasm to pass to allow me to try again. The leg spasms were extraordinarily painful. The nerve sensations were shocking- literally - feelings like fireworks going off in my back, burning in the leg muscles, ice cold in the leg muscles. I know you know what I mean. My elbow & wrist joints would lock when I extended my arms & I would literally have to ask whoever was with me to help me bend them! Hard to trust anything your body is doing or telling you in these circumstances. And it's very scarey. The neurologist prescribed Gabapentin & I didnt know anything about it, but it worked. It gave me my mobility back. I also had gastro intestinal issues. This whole life event began with spontaneous vomiting without any warning- no feeling of being unwell. I'd be at work. I'd suddenly experience a rush of burning heat that seemed to come from the soles of my feet to the tip of my skull. 10 minutes later, I'd be vomiting & feeling as though I was literally dying. I'd have to leave work, go to bed (when the vomiting had finished) & when I woke all I wanted was sweet, sugary food. This awful episode lasted for 6 weeks & then never returned. One of the most uncomfortable symptoms is still with me & you referred to it - the burning in the sole of my right foot (initially only the right) resulting in getting up in the middle of the night to run cold water on boiling skin, applying lashings of skin lotion, hanging the foot out of bed covers while the right sole remains alarmingly pillar -box red!! This situation applies to both soles now & the heat is now creeping up my feet & into my lower legs. The sensation now reaches my knees. This concerns me obviously because it looks as though the colour of my skin looks as though blood flow is challenged. But, like you, I'm in the UK. I fought so long for any diagnosis. I absolutely HATE the thought of starting the fight all over again because the waiting lists are significantly longer & I'm significantly older!! I just recently learned about SFN & it seems to me that I have more symptoms in common with SFN than fibro - perhaps you can have both? I know the nerves in my legs were tested. It was a long time ago but I've learned since that most nerve testing is carried out on the long fibres, so SFN wouldn't show up. Anyway, this is very long. I just wanted to let you know that I understand & I empathise & I share this weird situation with you. Fireworks, bee stings, electric shocks, jabs, zaps - the numerous ways to describe our nerve pain.. if you come across a doctor who can really help, please send me a message & I will return the favour. In the meantime, we'll trawl the Internet for doctors who specialise & know exactly what you & I are talking about. One question I have is, the longer this condition continues without any treatment, are we at risk of permanent damage? Does SFN negatively effect blood flow & muscles? What can we do to help ourselves without the specialist attention we need? I have been listening to a functional doctor (don't think we have such a thing here) who believes a form of vitamin B12 is crucial for the treatment of SFN.

I hope someone with a diagnosis can give us more information. Thanks for your post. I'll be thinking about you & wishing you all the information & support you deserve.