Thanks everyone for your comments and support. I don't know anyone with these issues so it's nice to know I'm not alone. I'm 45 years old with young children (ages 7 and 4). I pray that I'm able to go for walks and take them places again. I've been pretty much house bound for 9 months. Thank God for my supportive husband. Thanks again..

I have SFN in my face, lips and tongue.

I take Gabapentin for the discomfort. The SFN doesn't really DO anything but feel terrible.

Hugs, ElaineD

Braveheart I'm sorry your neuropathy is affecting your face. I've had small fibre neuropathy slowly progressing for five years now and my face is quite badly affected. My mouth is worst with the pins and needles and tightness in my gums and it goes up into my nose and into my left eye. I don't get huge pain with it or shocks but just this twitching and feeling like I have a Hoover nozzle stuck to my mouth and nose? So horrible. I can't tolerate Gaberpentin or Cymbalta or Amitipyline so I make do with paracetamol and the odd sleeping pill. Lately I've been trying antihistamine and it does seem to help me sleep a little but my small fibre neuropathy has changed from pain to numbness and icy cold.

I don't know what is causing mine but it's very widespread and I've had a lumbar puncture and all other tests so my neurologist has ruled out MS and Guillaine Barre and my rheumatologist has ruled out my RA or Lupus because I have no autoantibodies or immunoglobulins showing up. He therefore thinks the problem lies elsewhere but can't say where I should turn next. I'm thinking of endocrinology and have been referred back to neurology. I see an oral surgeon tomorrow. The last one told me he only ever sees this in patients with MS.

Good luck getting to the bottom of your problems more successfully than I have.

Hi Mat,

You list that you have Hashimoto's....has your doctor ever considered Thyroid disease as a possible cause of your SFN?

Cliffman

A good question! I don't suppose they have because I've asked many times. Initially they thought it was my RA drugs and also tested my serum B12. I assumed it was part of my connective tissue diseases because I have high inflammation in my blood (ESR and CRP). But less than two weeks ago my rheumatologist said that it can't be because my joints have no inflammation and all my autoabtibodies are now negative. Personally I think he's wrong but proving this would be impossible. My rheumatologist did suggest that the neuropathy and dizziness might have an endocrine cause but my GP dismissed this as implausible and has referred me back to neurology. Difficult to know what to do next. I'm stuck I admit!

It's interesting Mat that you mention a high "CRP" number in your blood because my Neuropathy started several days after having heart stents. The pain started in my left thumb, then spread to my right hand. I was referred to my GP, he took blood and the only thing he found was a high "CRP" blood result so he sent me to a Rheumatologist and nothing showed. I wasted several valuable weeks before going to a Neurologist. I wonder if there's some kind of link with Neuropathy and high CRP readings in one's blood?

Several month's later I was given a diagnosis of SFN and since then it has spread throughout most of my body.

Also, I was recently told I have Hashimoto's and the Neuro doc said it could be a possible cause but she does not seem sure. Are they treating yours with meds? They have not given me anything.

I hope you find out more and get some needed relief soon.

All the best,

Cliffman

Well I have had mine for five years Cliffman and been under rheumatology for all that time. I live in Scotland and the NHS is inflexible about people meeting criteria for referrals if not obviously falling under a specialism. So, on the basis that they believe my bloods are adequately normal for a hypothyroid person taking Levothyroxine - they won't refer me to a thyroid specialist.

RA is a rheumatic disease so I've been treated aggressively for this and monitored for inflammation. Once the joint inflammation went away they just shrugged off the face that inflammation or infection was still showing in my blood. But remember that small fibre neuropathy isn't a disease in itself but is often part of a disease process.

They don't seem to think that neuropathy would cause inflammation unless it's immune mediated - which I'm quite certain mine is. So if it's not caused by my RA or any other connective tissue disease such as lupus - then to my mind it must be linked with thyroid disease or something endocrine. Neurological conditions don't usually cause an inflammatory process unless they are part of a connective tissue disease. With your heart problems, high CRP, hypothyroidism have you or your doctors considered Lupus or Scleroderna or Vasculitis I wonder? Worth asking about if not abc getting your autoabtibodies taken. All these autoimmune diseases can cause heart problems.