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.

Thanks. I will do that soon. I am having a hard time sitting and typing these days because the pain has spread to some pretty annoying areas. Can't really sit/type much right now.

OK, I'm finally up to doing all this typing. (It often hurts my fingers, but today seems to be OK.) So here is the list of my supplements. I have been taking all of these for about 8 weeks, though I have been on the B12 and the multi much longer.

Daily Supplements:
Dr. Weil's once daily multi (pretty high in the Bs and D)
600 mg NOW alpha lipoic (1st thing, empty stomach)
600 mg Source Naturals time release alpha lipoic acid
5000 mcg Jarrow methyl B-12 (1st thing, empty stomach)
500 mg Jarrow acetyl l-carnitine x2
80 mg turmericforce
400 mg daily ginger x3
500/500 mg Country Life Cal/Mag

I have idiopathic small fiber neuropathy. It was chronic, low grade for a long time so that I didn't know what was wrong nor paid much attention. In November it flared up and has spread rapidly to cover most of my body. The doctors say they don't know why and my neurologist says there is no point in my coming back in since there is nothing left to test me for.

I was in a terrible and stressful marriage for 20 years. I also lost my job and cannot get disability because I don't have enough credits in the system. I was divorced in July. These things forced me and my kids to relocate away from family and friends to a cheaper area of the state this summer. The whole ordeal of losing the marriage and the house and the finances was/is very stressful. My being unable to work and watching my savings dwindle to nothing is very stressful. Not having friends here is very stressful. Having a special needs son is very stressful. Having to re-home our pets when we moved was very stressful. I'm sure somehow or another this is all related to STRESS. Except that I know I actually do have the small fiber neuropathy because my skin puch biopsy shows I have lost a lot of nerve fibers. Oh, I also had neurosurgery on my spinal cord in 2009 which caused my husband to check out of the marriage (not that he was ever there in the first place) and that was stressful. (I think that may actually be the end of the stress list.)

Two more clues. In November my doctor had me take pepcid for a month to try to settle down my chronic heartburn from gastritis. Also, I was in a car accident (hit by an uninsured driver) that almost took my vehicle from me, but I managed to save it and repair it in spite of my insurance company. (Can't believe I missed that on my stress list!)

It is possible this is a connective tissue disorder as that seems to run in the family (though not this seriously). Or it could be autoimmune. My mother has fibromylagia. I read that autoimmune could be allergy related so I elimated the big allergens, also about 8 weeks ago. I do not eat any gluten, corn, nightshade, legumes, dairy, chocolate. I eat very little rice. The only egg I eat is in the canola mayonaise I use. I cannot give up the mayonaise! I am losing weight rapidly because of just not being able to stuff enough calories into me and food doesn't even look good any more. Eating is a chore. I am trying to eat every three hours to keep my blood sugar level. I do think I am very sensitive to fluctuations in blood sugar.

Is there something I am doing wrong? Is there a food I should omit or could add back in? The diet is really drivng me crazy. Or is this just going to take more time?

Thank you very much!!

Ruth

I'd look first at the Country Life product. The ones I found online all had magnesium oxide in them. When that happens, when companies MIX different types together what you really get is mostly OXIDE... this is because the oxide is cheap and has a chemical make up that allows for the company to "claim" presence of it in high amounts. But what REALLY happens is that Magnesium in oxide form doesn't get absorbed much at all.
I called two companies a couple years ago on their consumer number, and they could NOT tell me how much magnesium oxide was in their product from their information sheets.

Magnesium chelates make for very large tablets, and oxide being concentrated, is handy to keep the size down. So it is often listed on ingredient labels. To get the benefits of magnesium you need to use a chelate separately (or a powder form listing no oxide).. magnesium is critical for many processes in the body and making sure yours is absorbed is important.

You might want to add in antioxidants, either by food choices, or supplements. Grapeseed extract, or a more potent curcumin source (your Tumeric product may not be optimum because curcumin is poorly absorbed), or astaxanthin (a carotenoid from red algae which is popular now). You can start with one of these, and change or add as you like.
I've used grapeseed extract with great success for years for allergy at 200mg a day. There are many other antioxidants that help too. Foods like blueberries and green tea are good food choices.

Here is an example of a stronger curcumin:
http://www.epic4health.com/cuul500mgena.html

I don't see any omega-3's on your list. Please consider taking some of these also, as they help with nerve maintenance and repair. You can try fish oil daily or Krill oil if you don't eat salmon at least once a week.

PN's progress for two basic reasons. Either you are intolerant of something you eat or take continually, or you have an hereditary genetic neuropathy like CMT.
So examining your food preferences, and any drugs you may be taking is important. Exposure at work or home to chemicals like outgassing formaldehyde, or ant poisons, toxic molds, etc need to be discovered.

But most commonly it is food that can be implicated in progressing cases, with drug use following close behind.

Thanks for all of this. I do eat salmon 2-4 times a week.

We moved in spring and my symptoms got bad in the fall. I was lucky to get this rental and cannot move again, so I sure hope it is not this rental.

I've done an eliminaiton diet that is so strict I am losing weight and don't know what else to eliminate. Since my symtpoms go up and down in a rather irregular pattern, I don't really know how to figure out what my triggers are. My doctor wants me to try adding foods back one at a time and eating them every day for 10 days to see if I get a long-lasting pain flare. The flares are so bad that I cannot bring myself to intentionally bring on a flare like that. It honestly feels like being burned to death but not getting to die. So I'm not sure how to test for allergy triggers. I do know I need to get some things back into my diet before I can take anything else out. Just don't know how to go at this.

I will look further into the supplements. I'll have to use up what I have before changing, though, as I am a disabled, single mom (husband didn't keep the "in sickness" or "only unto you" parts of the vows) living on almost nothing. That's why it is so hard to get a rental. If I had more resources it would be easier to attck this problem, but this disability has taken everything from me except for my kisd. I don't know what I'd do without them. They are such a blessing.

Thanks for your advice. You are such a great help to everyone here.