Small Fibre Neuropathy

[summer]

I have quite a bit of numbness/tingling/pain in the front of my left shin. It can also include a sunburn-like feeling on the skin over that area - very sensitive. When it's at it's worst it goes down onto the top of my foot. Occassionally, I have a little bit of the same on the right side, but never as bad. Hot weather or a bath make it worse. It also seems worse when I get into bed at night.

Could this be small fiber neuropathy or does that only happen in the feet? Does heat make SFN worse? I'm not sure if this is worth pursuing with my doctor. If there is nothing that can be done about it, I'm not really anxious to do any more testing. Does this sound like small fiber neuropathy?

Thanks,

Summer

[janiedelite]

Hi Summer, I was diagnosed with small fiber neuropathy at the Mayo Clinic by Quantitative Sensory Testing. Not very many places can do this testing which is very simple. They applied a metal disc and transmitted heat, cold and then vibration through it to areas on each leg and recorded my sensations. I had abnormal sensation of heat and they concluded I had SFN. My health insurance sees this test as experimental and won't pay.

I have burning ranging from a sunburnt feeling to standing on hot concrete (intolerable) that is worse in my feet, hands, face, and mouth but I can feel it all over, even in my ear canals and my eyelids. It prevents me from wearing socks most of the year, and yes it does get worse under stress, heat, with caffeine, with activity, and at night. Summer nights after a busy day are the worst and I lay in front of a fan with cold cloths draped over my skin. Sometimes I can't even tolerate clothing . Hubby doesn't mind... I also have constant numb and tingly sensations in my hands and feet.

My mom also has small fiber neuropathy and has burning/tingling in the backs of her thighs, perineum, and in her back when she lays down. She takes neurontin and has taken lyrica. Both have helped her, but for me they shut down my GI tract. There are other meds I can try but I'm opting not to at this time since we're attempting to get pregnant.

The Mayo doc says my neuropathy was caused by an autoimmune response to mono in 2006. My mom's neuropathy is idiopathic, although she has carcinoid syndrome. Mayo also said my neuropathy caused POTS because it damaged the small nerves that control blood vessels. There's not cure, but he said my body may "reset" itself.

It's very difficult to get a diagnosis of small fiber neuropathy since it won't show up on an EMG or other standard neuropathy tests. It's usually a diagnosis given after they exclude other neuropathies. You can go on neurontin, lyrica, or other drugs but they're usually associated with side effects that you have to decide if you want to endure. I do take narcotics very sparingly in the evenings, after a more active or stressful day, or on hot evenings because otherwise I can't sleep through the pain. I had POTS for 2 years before the pain, itching and tingling from neuropathy actually set in. It can also be diagnosed by a skin biopsy (looking through a microscope at the smallest nerve endings), although I brought an old biopsy sample to Mayo with me and mine was negative (I'd had the biopsy 9 months before when I was diagnosed with chronic frostbite).

When I first began to experience this, I noticed it on the front of my shins and described it to my Dr as constant razorburn. Take care, Janie

[summer]

Thank you, Janie, for taking the time to post this. It is very helpful to me. It sounds like you experience a lot of discomfort with SFN. I'm sorry to hear that you feel these sensations in so many parts of your body. I find it terribly uncomfortable at times, but mostly in my legs. I do get tingling in my hands as well, but no pain.

I'm glad your hubby is so understanding !

At this point, I'd rather tolerate it (so far, I still can) than add any more meds. But it's good to know there are options if it becomes worse.

You specifically mentioned that it would not show up on an EMG. What about nerve conduction studies? - would that be diagnostic (I don't think they are the same, but correct me if I'm wrong).

Interesting that yours began on your shins...hmm.... and yes, now that you mention it, it's not just heat that makes it worse. It's also stress and activity.

Thanks again. You've been a big help.

Summer

[jjb]

Hi there. We (my daughter and myself) had our testing last month and the doc suspects sfn. The way he tested though was with a skin biopsy.

It takes a month or so for the results to be in.

I think if you suspect this, it is a good idea to be tested as it can be an indicator of other illness.

One is diabetes, some others are autoimmune.

[janiedelite]

Hi Summer, I think nerve conduction studies are also EMG's. Someone correct me if I'm wrong! Stay cool

[gertie]

I have burning in my lower legs & feet. I can't tolerate socks, sheet or anything that touches my feet. It's almost impossible to get a pair or shoes that I can wear. Certain foods such as hot peppers seems to make mine worse. I take Neurontin for migraines & notice that it also helps the burning. Good luck!