Hi. I ran across this website and I was wondering if anyone could offer me any advice. I have horrible burning foot pain. I went to my doctor got diabetes test, lupus, lyme disease, vitamin definicency, etc. went to a gastrointestinal doctor and had some kind of sugar test, and some scope thing to see if I had celiacs, then I went to a neurologist and had nerve conduction and EMG plus a MRI of my back. Tomorrow I see a vascular surgeon to see if he can offer some help. Some people say it's a neuropathy, some people say maybe its circulation issues. I changed socks, shoes, started vitamin B shots, lots of things and I get no relief. The neurologist says that they think its small fiber neuropathy and nothing came up on the nerve conduction or some other test they did. They will do a skin biopsy. I also get really dry mouth, lightheaded a lot, I bruise easily and I tend to get out of breath easily even though I don't smoke and I'm a runner. (These things may be unrelated, who knows) Anyway, I need some relief, I can't stand it anymore. Do you have any ideas on what I can do, or who I can talk to? By the way, I tried Neurontin and it's horrible side effects, I'm on cymbalta now but only for about a month so I don't know if that's been enough time to start working yet.

Thanks so much in advance for any advice!

Hi myeamans, just replying to let you I have posted something on my original post (small fibre peripheral neuropathy). This is the best place to be and get information, I have learnt so much since I joined. Just by reading other peoples posts you also learn a lot and everyone is very helpfull and willing to give advice.
Best wishes

Lesley

Have you been tested for sjogren's? You said you started b shots. What was your level before? It can take time for nerves to heal and deficiencies to get better. What dose of Cymbalta are you on? I ask cause I was on too low of a dose to start off with. Did your doc give you as needed meds? Sometimes a combo of meds like Cymbalta are needed. I know at one time I could not tolerate neurontin but then tried it again a few years later but started very slow to lessen side effects. You stated you had an mri of the back but what about the brain? I am sorry I wish I had more answers for you but I would talk to your doc about as needed meds or adding/changing to the current

Hi myeamans, I have something else at home that help with my burning feet, I have a pair of boots(slippers) that have herb packs that slip in a pouch in the sole of these boots, they can be put in the freezer or microwave. there are 12 different herbs in them not wheat. I brought them at a stall in my local shopping centre, but can be brought online, the website is

www.herbpack.com.au

the slippers they show on their website are different to what I brought but they would do the same thing. they can be used for your feet or hands.

hope this is of interest to you.

take care

Lesley

Wow. I understand your frustration. I personally don't know if my feet are burning up or freezing. The pain is bad and the sensation really interferes with life.

I don't know why I have this neuropathy. I did a healthy amount of drinking and I smoked for 40 years, so I got those potentials. I was dx'ed with MS 22 years ago and PN is a known result of that. I'll say one thing - this is one sucky thing to have to live with. You really need to want to live to live with this crap. It took me a few months to adapt. I wasn't suicidal - I just wanted to kill everyone around me without this problem - people just don't understand. I would suggest you just develop a serious attitude and ignore the stupid pain and climb mountains. It seems to be working for me. You're allowed to use all sorts of expletives while doing this...

Now - to address the question at hand. Cymbalta - worked for a couple of days. Stopped taking it because I really would like my wife to stay with me (complete loss of the obvious). Lyrica - doesn't work. Gabagabagaba whatever doesn't work. There's been a few other drugs but I forget their names.

This is something you can live a normal life with. Check out the NASA channel during the next shuttle mission (launches 4/5/10). You'll see me at the back left console (GC) occasionally. Nobody knows what I'm living with...

Tom

Hi myeamans,
Sorry about the burning. It's not fun. I have it too, although I don't notice it until I've been walking for about an hour, so I think I'm one of the lucky ones. However, then it's bad. I'm on Lyrica - tried getting off it once (weaned, very very slowly) and was okay for a while then hit a wall of not being able to move. Tried Neurontin. Nada. Went back to Lyrica. Bliss. (Well, relatively speaking.) Regardless of what the docs say about vitamins, I'd sneak in some more Vitamin D3 (I take about 5,000 units a day - for the first time in about five years my joints don't hurt all the time -- go figure). Actually, my levels were low and if I did the conversion for the Quest results (they were off by a factor of 1.3 I believe) they were even lower than what's now considered optimal levels. You can check this in a number of places on the web. As far as the endoscopy for celiac disease, my cousin, whose daughter has it, was tested for it and even though the endoscopy is considered the gold standard, she had it done three times before they finally "discovered" the villi that had been damaged. Try going without wheat, rye, and barley for about a week and see if you feel any better. Can't hurt.

Sorry I don't have more info for you, but I have to say I agree with much of what's said on these boards: you've got to be your own advocate and your own diagnostician. You know best what your body feels like. Don't let any doctor tell you otherwise!

myeamans.
IMHO, the most important thing to do is find docs that are empathetic to your problems.
A neuro who is a specialist in PN and has the most up-to-date info on meds and treatments. A PCP who understands and will work with you, is open to suggestions from you (and your research), & will coordinate with your neuro on meds and tests.
The second thing to do, is read as much as you can and be as informed as possible about what is happening to you.
We all have burning feet (& zaps, zings, stings, buzzing, squeezing, swelling, etc) at one time or another, .... or constantly - without the right meds. A combination of meds ('cocktail') to relieve your symptoms and pains, usually is the ticket to relief.
The PN specialist/neuro....is your first and moist important step in being able to live a normal life, having this incurable affliction.

I have a question....

Is the burning like the skin is burning? Do you have redness with it? swelling?

Or is the burning a deep in the foot burning?

When I get my burning, it is more like the skin burning, and it can move up my legs to mid-shin area.

Thank you all for the replies. It's nice to know there are so many people out there that understand. I saw the vascular surgeon Wednesday and he did a ultrasound on my legs and he wants to do an arteriogram and angioplasty. That's scheduled for the 18th. He said he's concerned maybe I have blocked arteries and the blood supply is getting cut off. My feet turn really purple and red, the other day at the doc 2 of my toes were really dark, he said it looks like a circulation thing. And yes, they swell too and get really shiny.

The first thing you need to do is check your magnesium intake.

If you do not take any, and do not eat nuts, oatmeal or beans, you could be very low.

You can test this with a soak in lukewarm (tepid)water and epsom salts. This can increase the circulation. If this works a bit for you, you then can take oral tablets, and apply a magnesium cream to open up the blood vessels. Sometimes this is from spasms only, and can be reversed. Do you take Calan, or Cardizem or Norvasc for blood pressure? These drugs can make that red foot thing worse.

If you have smoked cigarettes, you could have peripheral artery disease as well.

The turning colors and burning can be erythromelagia. This condition responds to magnesium therapy.
Dr. Jay Cohen MD had this himself, and writes about it on his website:
http://www.medicationsense.com/erythromelalgia.html

Spasms come and go.... blocked arteries don't change. So if you have times with less issues, then more burning, consider Dr. Cohen's advice.
He has written a book on Magnesium, which discusses it.
http://search.barnesandnoble.com/Mag...I=Jay+Cohen+MD

Here is an excerpt:
http://books.google.com/books?id=oD3...trophy&f=false