Mine seemed to come on slow for the first couple years, mostly pain and tingling in my feet and hands, nothing I couldn't live with. In the last 2 years, the pain and burning increased intensly in the feet and hands with the worst coming in the last 4-5 months. My bum started to burn, then the burning and pain started moving up the legs and arms. Now my entire body surface feels like a bad sunburn, even scratching an itch is very painful. I wake up 2-3 times a night with heavy sweating, though I am feeling cold. My legs below the knees and my feet constantly feel like they are always cold (sometimes like they are in a block of ice) even though they couldn't be that cold (I've tried it with warmed socks-same cold feeling). My legs have intense pain and burning during the night and mornings which often makes me unable to walk or stand up, even to the point of almost making me cry! I have dizziness, balance issues, even to the point of needless babbling about things (i.e. "honey, did I lock up the boat before we left"...we do not own a boat). I can't stand for any length of time and can only sit for about 30 seconds before my bum is burning intensly. My only best position is lying on my side in bed! Typing can't be done long before it feels like tapping on sewing needles! I have constipation, difficulty in starting urination, etc. I currently take 3600mgs a day of Nuerontin and 30mgs a day of Methadone. I take a 3 day "drug holiday" per my neuro doc every month to aid in the tolerance issues. By day 2 I cannot get out of bed except to go to the bathroom. The Methadone is not working very well anymore at the current dosage. I am making an appointment tomorrow to see my neuro doc (hopefully sometime soon), but he doesn't seem that interested in me, in fact he said he just sees me because he must every 6 months due to my Methadone Rx. He says he believes my SFN is degenerative in origin and gives no other explanation nor has any interest in doing anymore tests. I guess its not a "cool enough" disease for him!

Most of this bad crap has come on very strong in the last few months (say the last 4 months). Very, very fast! I would just about give anything for 30 minutes without pain! And I am only 47 years old. My son cannot ride piggyback on me, nor high-five my hands at age 6! I am very frustrated and angry, there is no time during the day (not even 5 minutes) without some level of pain (and its mostly a 6-9 on a 10 scale). I am tired most of the time and cannot work anymore (starting the lovely social security disability claim now) even though I sit at a desk all day. It puts me in a lousy mood alot. I do not show this emotion around my son, but my wife notices the change in me and I fight daily to be more upbeat about my condition.

I don't know what to tell ya, just try to hang in there. It can come on slow and even stop the progression sometimes, but cases like mine seem to just be a steady progression of worst to worser and short bursts. Hopefully your case doesn't follow my path.

Jay

I am so sorry for your illness. You reallly put in perspective how this disease can affect people so differently. I hope you can find some type of relief from your pain. I know that onremitting pain is horrible, and you have a 5 star example of how bad it can be. Where the docs able to come up with a cause of your PN? Or, is it idiopathic in nature like so many people afflicted with this disease? The problem with this crummy disease, is it is invisible to those around us. We aren't jaundiced, or in a wheelchair....well at least those that are still fighting sensory PN in their hands or feet. Again, I hope you can find a doctor who can work with you and show some concern. Have your tried Lyrica? It has been a much better drug for me than neurontin...just a thought.

Jay, I am so sorry for everything that you are going through. Yes, It is true we all are different when it comes to this disease, but one thing I have come across quite a lot on the net is the treatment of patients by many neurologists. Once they find out that it's neuropathy, especially when the cause is unknown, many patients feel tossed aside. I know I did. My primary doctor actually said he was disappointed in my neurologist behavior, and said, "I'm so sorry" before setting me up with another referral. My neurologist wasn't a mean man, Just uninterested and disconnected once he did his tests. I realize there are exceptions, and there are some very good doctors out there, but since I have been stricken with this and have talked to other neuropathy sufferers on the net, I find it often very common to be treated in such a matter.

is over 30 yrs old.

Initially it was because of a hard to diagnose thyroid condition.
Once that got the proper attention, my feet and hands improved somewhat (about 80%). At one point I could not sign my name. I had a power of attorney for my husband to use in my behalf. My very first supplement was P5P over a decade ago. This one was pretty dramatic in giving me improvement, esp in my hands. I don't wear the braces anymore unless I overdo gardening. Some days it is hard knowing what is too much. So my husband helps with the heavy digging now. I managed to continue to work, and be on my feet up to 13 hrs a day. (no sitting in my job).

Then I became OLDER...and then it was insulin resistance that started in. This was burning, and sometimes stabbing twinges.

I have no real progression today, and many low pain or no pain days. I do not use drugs except for Tylenol or Aleve OTC.
I have found several supplements that work for me. It was slow going, some trial and error. I have some food triggers, that took me years to figure out. Since I eliminated potatoes at night, and MSG and all sugar/fructose my burning has been much better with fewer flares. I did gluten free for about 3 yrs, but did not see nearly the improvement that fructose free gave me.

Everyone is different, genetically.

Thanks everyone! :-) Since the FDA has not approved Lyrica for SFN treatment, my insurance company will not cover it (and its VERY expensive without insurance). My doctor will not Dx a malady which the FDA does approve Lyrica for. I guess he's too above-board to do that, as a professional myself (accountant), I understand his position, though it doesn't help me out much.

I did see him again today and he asked if I had tried Oxycontin, apparently he doesn't remember that my insurance company won't cover Oxy and prefers Methadone instead. He wouldn't increase my Methadone and he can't up the Neurontin since I'm at the max allowed humans a day. He didagree to write a disability letter, though said he would only be telling them what I have told him since SFN cannot be confirmed by testing. I'm afraid it may not be much help with my claim, but I have no other choice, unless one of you have an idea.

Anyway, thanks for the nice comments. I know I ramble on too long.

Jay

--CAN be confirmed by certain tests, such as quantitative sensory testing, sudomotor axon reflex testing, and, the most recent gold standard, skin biopsy that shows a reduction in intraepidermal nerve fiber density.

Take a look at this:

http://www.medscape.com/viewarticle/563262_6

None of these are likely to show a cause of the neuropathy, but they can certainly document why you might have symptoms.