Wing42 ~ Your first paragraph describes my pain to a T. Thank you so much...I thought I was crazy trying to describe the pain to my doctor. Electrical jolt is what I feel and my foot jerks and trembles at time.

FOR 4 YEARS I HAVE TIN NITUS,FEELING LIKE DIFFERENT PARTS OF BODY ARE STUFFED UP,BRAIN FOG,DIZZINESS,BURNING AND COLD FROM INSIDE OUT.NUMBNESS AND TINGLING,MUSCLE WEAKNESS,BELLS PALSY,FORGETFULNESS CRAWLING SENSATIONS,MUSCLE WEAKNESS AND JERKS.ASHTMATIC BRONCHITIS THAT LED TO RESPIRATORY FAILURE.PETECHIAE RASH.INTERMITTENT HIGH BLOOD PRESSURE,LOW GLUCOSE(NOT ALL THE TIME.SEVERE ANXXIETY.i WAS BETTER WHEN I WAS TAKING STEROIDS,SOMEWHAT,ALTHOUGH STEROIDS MADE ME EMOTIONAL.MY DOCTORS THINK THAT IT WAS CAUSED BY THE RESPIRATORY DISTRESS BUT i THINK THAT JUST MADE THINGS WORSE BECAUSE I HAD THESE SYMPTOMS BEFORE LONG BEFORE.i MUST ADD THAT I DRANK BEER AND SMOKED DAILY,HAD A LOT OF STRESS,DIDN'T EAT RIGHT OR SLEEP GOOD.I HAVE TAKEN VITAMINS AND BEEN NONSMOKER FOR MONTS

Your symptomsbate actually very TYPICAL and common with Lyme disease, especially the tinnitus and Bella Palsy. Please read my threads on Lyme- you find them by searching. You might want to go to the Lyme support group I talk about and be sure to the blood test where your blood is sent to Igenix.

The IlADS website ia good. Buy I've posted on Lyme and don't recall all the info just now, so I'd urge you to search for my posts on it. Your symptoms are just very typical.

This is all so new to me...
I have to wait until June to see a specialist.

Welcome to Canada. In the mean time I will try the supplements above. When I walk I get overall fatigue, but if you tell me this will help I will give it a try. I have numbness from my heals, since 1 year, when i walk, the numbness goes up my legs. I was diagnosed by a chiro and family doctor with PN last week. No EMG yet, I must wait...Canada eh.

In the mean time, I am not getting any better and I am doing a lot of research and the stress of all this does not help. I feel so alone. I am a very positive person, but for a triathlete this is so scary. I have to use an electric cart to do my grocery shopping. I can't work anymore. I eat a very good diet, but not a big variety due to sensitivities. Any suggestions? I am all ears...
Breathe

Back in July of 2010 when still dealing with pretty much constant overall burning non-length dependent small fiber neuropathy that began in January 2010, I saw the title of this thread and said, "Yeah, right."

Now it's February of 2011. And there's been no more burning since sometime in the fall, just some residual skin sensitivity which means still not being able to wear certain clothing (fabrics).

The neuropathy is still there but to a much lesser degree. I've been told the cause of mine is Sjogren's Syndrome.

So glad I found this forum and decided to go for the recommended supplements (thanks to MrsD's posts) for these reasons:

1. Bad reactions to neurontin and Lyrica; and

2. MrsD knows what she's talking about.

As Sjogren's is incurable, the neuropathy will probably always be there to some extent. There's dizziness, a little loss of balance, etc. and a lot of photosensitivity (from Sjogren's), but overall doing so very much better. Just keeping my fingers crossed and continuing the supplements.

Sheltiemom18

Sheltiemom,

Good to hear you're feeling better. I've been thinking of my own progress since last summer. My symptoms are reduced, and I have almost none of the horrible foot cramping that was so painful. Fatigue is still a big issue, though.

Like you, I have the Forum and especially mrsD to thank.

After reading all this it certainly does give one hope! I was Dxd with small fiber neuropathy about 10 months ago and let me tell you I have gone through all the symptoms since then! And to think it all started with an annoying numbness in my toes!!!! I have been through the burning,freezing,feet feeling wet,shocking,muscle cramps,ice pick feeling and just so much pain that you just can't imagine if you haven't gone through it yourself! Sure people say they understand but how can they?
I have had alot of blood work done and my vitamin levels are good,I am not diabetic,have been tested for heavy metals,lupus,hep C,and others that I can't think of right now.
I am on 300 mg gabapentin 3 times daily and 15mg baclofen 3 times daily plus I use a compoud cream on my feet and still not much relief!
I wish you all better luck,we all need it! Heres to better days!!!!!
Sandy

I want to tell my story hoping it may help some of you who are suffering with this dreaded disease. Around 2005, I had pain in the big toe on my left foot. I self diagnosed it as probably a toenail fungus. I kept putting tea tree oil on it but it got worse over time, and then my right foot had the same symptoms. One day in the summer my feet turned bright red, and I had an unbearable burning pain. I called my doctor and she said it could be an allergic reaction to the rubber flip-flops that I was wearing. I got rid of those sandals but it didn't help.

And then, thanks to the internet and our wonderful world of "High-Tech", I decided to do my own research on Google. When I put in all my symptoms, I came up with "Peripheral Neuropathy". I printed out about 50 pages of info, and brought it all to my doctor. She skimmed through it, and said, "Mmm, interesting". She then scheduled me for all kinds of tests over the next 5 years (MRI, EMG, CatScan, all kinds of blood tests, physical therapy, and a lot more that I can't remember. During that time I saw 3 different Neurologists, a Hemotologist, and even a Podiatrist. As it turned out, I don't have Diabetes (for which I am thankful) so my neuropathy was labeled "Idiopathic". One Neurologist told me it was probably "Small Fiber Neuropathy". He put me on Amitriptyline which I discontinued after about a month because I didn't like the side effects, and I didn't think it was helping.

There were 3 important things that made me realize the doctors knew nothing about PIN. First of all, the Hemotologist said it was labeled "Idiopathic" because the idiot doctors didn't know what was causing it. Secondly, not one doctor discussed supplements or nutrition. Thirdly, and MOST OF All, the idiotic Podiatrist after taking x-rays talked me into having surgery to remove the toenails from my big toes, saying it could be ingrown toenails. He even gave me a date for the surgery. When I got home, I had a discussion with myself, and talked myself right out of that scam. I called him and told him I did NOT have ingrown toenails. He said to let him know if I changed my mind. He was the biggest idiot of all. At least all the other doctors said they couldn't help me.

I have researched and found many support groups for PIN. I've changed my diet, added and even discontinued different vitamins and supplements that other people recommended. I decided I was going to learn to live with it, and not go on any prescribed medication for as long as I could bear the burning and pain in my feet. Last month I went for a follow up with my doctor, and she suggested I have one more test which was a "Cardio-Vascular" test for oxygen and blood flow to my legs, due to the fact that I was a smoker for years (now smoke free for the past 10 years).

The test proved that I had no problems with circulation but my doctor suggested I take a whole aspirin (500mg) every day, I was already taking the 81mg. She said to take the 500mg instead because it couldn't hurt, and it just might help because it is an anti-inflammatory. At the same time that I started the 500mg of aspirin I added a multivitamin which I had discontinued because it had B6 which I believed too much of could aggravate neuropathy. I do have a special regime of vitamins and supplements which I will post if anyone is interested.

Now the following is the reason why I'm telling you all this: "FOR THE PAST 2 WEEKS SINCE STARTING THE 500mg OF ASPIRIN, THE BURNING IS ABSOLUTELY GONE". I can't believe it, I can wear my sneakers and sox all day, and there's no burning. I haven't even had to use the mint lotion at all, which I used especially at night for the burning pain. I still once in awhile get a few stabs of pain in my big toes, and I know I will always have neuropathy, but if it stays the way it is right now, I will be sooooo happy....my fingers are crossed.

I feel a great need to put this info out there but we each have different kinds and symptoms of PIN. I strongly recommend anyone taking pure aspirin to make sure it's enteric coated and taken with food, and be aware of side effects with stomach problems. There is so much more I do as far as supplements, nutrition, and exercise that all comes together in keeping my neuropathy at a bearable level. I would be happy to share with anyone who is interested.

For now I able to go on with my life without the miserable burning. Every once in a while throughout the day, I look at my feet and say out loud, "I can't believe it, thank you God!"

Love & Hope to all,
Rosie xo

Hi Rosie,

That's great news, and
I can't take aspirin for more than a single dose at a time - even enteric; it aggravates IBS and I begin bleeding almost immediately.

I did start R-Lipoic Acid a few weeks ago (you didn't mention if it's part of your regimen) and have had similar results. Within 48 hrs the burning stopped completely, and hasn't returned yet. I understand my results are not typical; it can take up to a couple months for some folks, if it works at all. But it's another option to try.

Doc

Hi Doc,

I've decided to pass on the aspirin even though it really helped me. I read too many horror stories on how it destroys your stomach. I take alpha lipoic acid (ubiqutol) B12, Benfotiamine (B1), and now I sent for some P5P (B6) recommended by Mrs. D. I also use a topical cream (Topricin) that really helps with the pain for a while. I also take a multi vitamin, and krill oil, calcium, and vitamin D3. If I want relief from aspirin I'll take Alka Seltzer regular with aspirin, also recommended by Mrs. D. This site is wonderful, so many friendly and supportive people. Take care & be well....