Hi. I am looking for help with my diagnosis of idiopathic small fiber neuropathy. I tried several prescription meds, but cannot tolerate them due to myoclonus, anxiety, etc. I am now taking several supplements and have eliminated a lot of potential allergens from my diet. The pain level has gone dow about 25% but still keeps me from having any kind of a normal life.

I had small pains off and on for years that the doctors just shrugged off. Then they tried me on B12 shots. No help. Suddenly, about 4 months ago, the pain flared up and started to spread. I now have pain almost everywhere. It moves around and flares up and down and is often unbearable. It is mostly burning but some stabbing/electrical as well.

The neurologist tested me for everything she could and found no clue to the cause. Everything I have read says that whatever this is, it should be slowly progressive. This is not slow to me. In 4 months I have gone from mainly burning feet to most of my body.

Does anyone have any idea what this might be and how to deal with it?
Thank you.

Welcome to NeuroTalk.

I think when things are constant and spreading and regular medical help is not working...you should look at diet.

Gluten intolerance is a known cause of some neuropathies.

Here is a link to read:
http://sites.google.com/site/jccglutenfree/

Also look and see if you took or are taking any of the drugs that have been shown to cause PN:

http://neurotalk.psychcentral.com/thread122889.html

It would be a good idea to read the PN forum and see how others are coping and also read the SubForum there with all the educational links.

Thank you, Mrs. D. I have been to the PN forum but I couldn't find it just now. I still haven't quite learned how to navigate neurotalk. I will look again.

When they said idiopathic, I suspected diet and have been gluten-free and dairy free for 6 weeks. I thought this would at least stop it from spreading, but it hasn't. It's like I have the new pain of the week. This week it is upper right inner thigh and eyelids. It's getting very scary.

I do have 2 kids that I cook normally for but I am very careful to never lick my fingers or snitch a bit from anything they eat with dairy or gluten. Do you think I should look for a different allergy or does it just take a long time to see any change? Thank you.

Ruthanne

There are other things too that can cause burning stinging feelings.

I am on a new low/slow carb diet that encourages beans of various sorts to lower blood glucose.

Well, I bought some DelMonte diced tomatoes to mix with my black beans and steak last night for flavor. Well, those tomatoes really set off my burning in my feet and lower legs last night. Whew....it was considerable!

The nightshade veggies... I've been eliminating quite a bit with success, but I still allow some tomatoes here and there. The nightshades are potatoes, tomatoes, eggplant, peppers, chilies.

I can get burning from potatoes, at dinner.

Another culprit is MSG... this additive can really make PN, chronic pain, or burning much worse. So it needs to be avoided too. It is in many many processed foods, soups and many restaurant offerings.

I eliminated nightshades about 3 weeks ago. I'm on a very strict diet that has eliminated almost every common allergen. About all that's left is the small amount of egg in the mayo. What's weird is that more and more of my body is effected anyway. Is it just too soon to see results, or should I be looking for more allergens? I have been losing weight because of this diet, which, in my case, is not a good thing. What would be the big allergens you would eliminate? I am already doing gluten, dairy, nightshades, corn, legumes. I rally don't know how to go about this.
Thanks.

Well, Nutrasweet is one to avoid. The aspartic acid in it can be neuroexcitatory.

Also make sure you are getting enough magnesium. Low magnesium also leads to excitation of the NMDA receptors.

Check your D3 levels and see if you are really low. We had a fellow on PN 2 years ago who fixed his low D and his pain went away!

If you receive vaccines regularly like flu vaccine every year, I would certainly eliminate eggs. There are egg peptide fragments in egg derived vaccines.

I think the best elimination diet information I've seen yet is in this book:
Obesity's answer:
http://obesitysanswer.com/
The last 1/2 of this book goes into detail about removing allergens from your food. This is how I discovered potatoes were so bad for me.

Some people are highly allergic to citrus fruits, too.

But also look at things like dry cleaning. You may bring those solvents into your home and against your skin.
Out gassing of formaldehyde (common in new homes).
Black mold in damp places

You will want to try the oral methylcobalamin instead of B12 shots. Take 5mg daily on an EMPTY stomach for 3 months. Your blood levels should come up quite a bit. If you have copies of your tests, see what your B12 really was. Methyl B12 is the active form. Cyano in most shots is synthetic and some people don't respond to it. Methyl B12is not expensive, and most commonly online. iherb.com and Puritan's Pride now have it very low price.

It would help me if you listed your supplements so I can guide you more accurately.