Tingling can definitely be a sign of neuropathy.

I'm glad to hear you're living a normal life, and I hope that continues. It's difficult to know how it will develop, which is why it's good to try to get to the bottom of things. But that's not always easy, and it's a good sign that things have remained stable for two years.

I get that! It's unfortunate. Well, perhaps there are others on here from the UK who can help you out on that front. I certainly can't. Either way, good luck!

Hi Burnsie:
I have similar symptoms. I've always had various little twitches, but 4 years ago I started getting some tightness in my legs, which turned into twitching, then cramping, then pain and tingling in my feet. After the obligatory google search, I was sure I had some horrific disease - but testing failed to show anything serious. Most of the twitching and cramping has receded, and I'm mainly just left with low level pain and numbness in my feet. Life goes on, but a little different than before. I take a low dose of Gabapentin to moderate the symptoms a bit, and some supplements which also seem to help a bit.

But, I have always been intrigued by the overlap between SFN, BFS, and Fibromyalgia - the common denominator being damage to small fiber nerves. (Lots of people with BFS and Fibromyalgia show small fiber damage on biopsy - and lots of people with SFN have twitching, cramping and pain that can also be symptomatic of BFS and/or Fibromyalgia)

If you do a search, you can find a few old posts where I have brought up this issue.

Unfortunately, none of this information seems to bring us any closer to an effective treatment, so.............

If most people with BFS also have SNF, they should really stop calling it a benign condition they should really stop calling it a benign condition!!!!

Interestingly over Christmas my sister mentioned that she think she has BFS. We have never spoke of any medical condition before and this was completely out of the blue.

However surely with something so rare and misunderstood, there has to be a link here too!!

Hi burnsie

I’m new here too. I got my biopsy on the nhs - my neuro wrote to Professor Anand at Hammersmith asking for the biopsy and included copies of my clinic notes and I got an appointment letter two weeks later. I had the biopsy last week. Wait time total of 4 weeks.

Good luck.

Wow, quick work...what were your symptoms?

Mine are mild, and i'm young (for PN), so that's why I expect a battle...but i'm thinking after 2 years, I at least need to be able to rule something in or out...it's no good, whatever this is, starting to progress in 2 more years and I could have stopped its progression!

It took me a year to get this far. I’m 35 so young too. I have full body burning, stinging, twitching, POTs and autonomic problems, GI issues, it’s pretty full on and very debilitating. It came on fast (4 weeks last year) and my feet are now permanently numb. The pain however started in my shoulders after the Gastro stuff . I’ve seen 4 neuros and it took me a long time to get them to believe I was not making it up. Once my cardiologist diagnosed POTs he sent me to a better neurologist that got the sfn ball rolling.

My symptoms began with what I thought was Restless Leg Syndrome. A few months later began the burning in my legs and hands, tingling and random stabs of pain which are symptoms of SFN. But now I do recall that I would be sitting in bed watching tv with my husband and I would get these strange movements in my upper arm. I felt like I had been possessed. My husband would watch in disbelief. Sometimes they would occur above my knee. They would usually last about 5 minutes but sometimes they would go on for more than an hour, go away, and then come back on the other arm or leg. They went away after a few months and I had forgotten about them.

Four years later and what I'm left with is burning in my shins, left hamstring and lips. It's always present, but the degree differs. I also have RLS sensations some nights. Enough to wake me up, but if I stretch out the muscle it will usually go away. I take something to sleep most nights so it's hard to gauge how bad it really is.

Whats POTs?

I am sorry you are suffering. I suppose the only hope is, that as you're sti;l young, all the medical advances will one day be able to help (I know not a lot of money is spent on SFN research, but maybe MS research will hold a key).

In terms of me? Well, I haven't really noticed it during the weekend, and had to think about it a couple of times (it's still there of course).

So, given my sentence above compared to how much pain you are in, why should a GP give me an appointment to get a skin biopsy when there are so many people more needing than myself. I wouldn't and shouldn't!

because if you find out what you have early you might be able to take steps to slow it down or keep it from becoming worse.

I suppose another way of thinking about it, surely they would want to test me, someone who has initial symptoms rather than someone who is pretty much clear cut, 100% with burning etc.

I have noticed a slight burning my left foot and other issues over the past week and a bit, but am putting that down to my brain. Just way too much of a coincedance. But will book a GPs appointment.