Welcome to Neuro Talk. You found a good place to seek answers and comfort. I hope you get alot of people who will talk to you about the NP. I do know the pain from that can be very intense. Your doctor sounds a bit too laid back and not quite paying enough attention to you. If they themselves could feel that pain just for a minute, they would be a little more compassionate. You will find good advice here from those dealing with this disorder. I really wish you all the best. This forum did alot to relieve my own worries more than once. Take care, ginnie

Welcom to Neuro Talk. I agree with ginnie this forum has done a lot to alleviate many of my worries. It sounds as though your primary care physician has not referred you to a neurologist yet. I would suggest that you request a referral if you need one. If not try to see if you can find one close to you. It is always nice to know someone who has been to them but if not look on the web. A lot of doctors have ratings on there now. I have learned that it is important to have treatment as early as possible. Good Luck with everthing and again Welcome!

Hi there, im 38 & have similar syptoms myself! Although, mine have been since Jan. 2012. Started w/ a weird numbness in my left pinky finger, then just spread through the palm of my hand, then both hands, now my feet, legs & arms too! At times the pain is unbarable, since all this began, i literally have no feeling in my hands & feet, & legs too, my walking has got worse, & my daily activities r horrible! i feel at times (NOT REAL) im on Neurontin, along w/ twice a week B-12 shots, that my husband has to give me. Ive had MRI's EMG, & many-many blood tests. All the blood work came back ok, but i do have lesions up & down my spine into my brain stem! I seriously cant handle much more. Now going to a Gastaologist in July b/c my body also has an absorbtion problem, not to be gross, but (EVERY MORNING) i have severe diarehha atleast 2-5 times, & trust me, sometimes i dont make it, its very embarrassing, & a feeling of helplessness! I just hope & pray this can & will get under control & soon too, b/c im not 1 to be so depressed, im usually an upbeat person, & this is really hurting my self esteem, i just feel like this will never get better! I enjoy going shopping & being w/ my family/friends, but lately, who wants to, when u feel so odd? Just was wondering if u or anyone else is going through this starnge & scary problem. TY for reading, Gina*

Glad you both found NT. This site has been a good thing in my life, and has helped to keep my sanity for sure. I do know about PN, it is one of my problems. I just have it on one foot, but that is enough. Mostly I have cervical, and degenerative joint problems. I am sorry you suffer from PN. It is miserable and so many folks suffer from it. Hope you get some kind of relief. I went to a new pain specialist, who is now using some nutritional B12 and B complex vitamins to help. This is the first time I took suppliments. Maybe someday scientists will find a cure for PN and RSD, and all these kinds of issues, that don't seem to have a cause. All my best you you both. ginnie

Kev, I too have been diagnosed with small fibre neuropathy following a skin biopsy - looking for patterns we have noted that the burning is often worse or starts about 15 mins after food.

Hi DataM, Welcome.

That could be indicative of a food trigger. Have you figured out which foods are/may be causing the burning? With some folks it's gluten, but everyone is different. With me it's some types of hot peppers, but not all (weird, I know...)
Google: peripheral neuropathy food triggers for lists of common ones.

As you continue reading this forum (particularly the Sticky threads) you'll find a lot of good practical information on curbing symptoms and progression. Make use of the archives (Search function) too.

Doc

When you eat, if you have insulin resistance, a huge bolus of insulin is released inappropriately. This increases activity of Cox-2 prostaglandins/cytokines which are inflammatory. You can test this by trying some aspirin before you eat. 45 minutes before. If some of the burning is blocked, then inflammation is a clue for you.

You should have a fasting INSULIN done to see if it is elevated.
This can reveal a trend to impaired glucose tolerance which is pre-diabetic.

People with reactive changes in blood sugar at meals, often get gustatory sweating. If you get sweating with the burning that would be another sign of latent diabetes.

Hello all,

Thought I'd update you on where this is right now.

To go over the basics. Had left foot pain since October 2011, right foot pain since Nov 2011, both hands added in Dec 2011. I had a massive stress out, stopped taking my calcium channel blockers for blood pressure (maybe this wasn’t wise but I exercise a lot these days and my BP is just about in the normal range), imagined the worst. For some reason this was as bad as the pains got (sometimes, I suspect the calcium channel blockers). They never progressed from here.

It’s pain around the sural nerve in my left foot, right foot is a bit random, but it hurts the least out of all my hands and feet. Hands only really hurt when I’m not moving them much (say, when holding in a position for a long time, on a desk etc). But when they do hurt… oh wow do they hurt.

It’s only EVER pain. No numbness. No tingling. No stiffness.

I tried the gluten free diet. Seemed to work at first, but quickly I discovered that it was still there, no better. It only seemed to be good during the ‘high’ I got from the expectation of it working.
Tried the recommended B12s and most of the supplements, didn’t appear to have an effect.
Had blood tests and MANY home tests with blood sugar kits. Blood sugar is normal, not anywhere near pre-diabetic phase.
Had multiple MRIs, nothing found.
Had nerve conduction tests, nothing found.
Neurologist examined me. Perfect balance and no external signs of neuropathy WHATSOEVER. She sent me away, recommended anti-depressants for the pain but nothing else…… I wasn’t pleased.
I have one final check up with the Neurologist in Nov 2012.

During the last 10 months I’ve had VERY brief periods of no pain. For example, 2 weeks ago I managed to experience 4 days of drastically reduced pain. I’m not sure what caused this. I wasn’t taking any medication, or following any diet. I was just chilled out, and had spent a very sunny day in the park the day before the pain-free period started. I was relaxed, and even managed a tan, but I have no idea why it affected me.

My current theory is that stress affects it more than anything else. I’ve struggled with stress for many years, and it sort of rules my life. I’m always on edge one way or another. As for the neuropathy…..it’s a mystery to me…. and also a mystery to the neurologist. Unfortunately, it’s massively frustrating and painful at times. I’ve not yet resorted to the anti-depressants…… I have heard many bad things about them making you deathly tired.

Anyway. I’m getting on with life and try not to complain about it too much, as many people have conditions far worse than mine.

Hope you are all well,
Kev