Hi my name is Rhonda, I have peripheral neuropathy celiacs disease, my neurologist started me on Neurontin about a month ago. I find as long as I take it with food I don't get the zombie feeling quite as much. Beings that I have celiacs disease (allergic to wheat,rye,barley,oats and everything must be gluten free) it is not easy to find a medication that I can take. My neuropathy is progressing and is lasting longer. Does anyone out there have any insight? Any information would be greatly appriciated.

There is a whole forum here for Gluten/Celiac sufferers.
they most certainly will have answers for you

http://neurotalk.psychcentral.com/fo...aysprune=&f=13

Hi. I am back again on the upping/adding/changing meds. In the past I had side effects or they did not help. I am now trying to give it longer and also push through the annoying side effects of course dangerous ones can't be ignored but anyhow sometimes they do pass and I adjust to the next level.
Fl sunshine I wear every min I am up nike walking shoes. I have a friend who really like New Balance walking shoes. For me I need adequate support or I feel like I have broken ankle and knives in my feet.
Rhonda sometimes the meds take time and I wonder what dose you are on as neurontin I have been told takes getting to a proper dose for better pain control. Also how long have you been on your gluten free diet cause I would think it can take time for your body to repair.
Hloutos I am sorry about your mom. I am not that familiar with sjogrens though I had a lot of the symptoms of this and PN. You said your mom has tried those meds but has she went to see a pain anestesolgist? I would suggest that as there may be alternative treatments or procedures they could do other then meds since she is not responding. I am not sure where you live but I would call a major hospital in your area and see if they can guide you. Hang in there as support for your mom but also for the family is key. I know how this takes a toll on my mom and of course myself but one can't give up hope.

Hi

I am a new member and as a physician have extensive experience with patients who have peripheral neuropathy.

You should realize that peripheral neuropathy is only part of a diagnosis. It basically means dysfunction or disease (pathos) of the peripheral nerve.
It can be caused by chemotherapy (particularly taxol and cis platin or carbo platin)
, alcoholism, high lead levels, vasculitis (inflammation of the bloodvessels) of the nerves, diabetes (diabetic neuropathy), vitamin B deficiency, compression of the nerves (compression neuropathy) or a combination of the above.
The symptoms of peripheral neuropathy can also be mimicked by a central nerve compression (like a herniated disc in the neck or back (lumbar spine).
The best strategy to help patients with peripheral neuropathy is to make an accurate diagnosis, optimize the patients’ metabolic problems and decompress the peripheral nerves at places of narrowing if indicated.
Peripheral nerve decompressions are performed by only a handful surgeons in the country, typically plastic and reconstructive surgeons who have specialized in peripheral nerve decompression. They will be willing to decompress your peripheral nerves only when they feel that your symptoms are the result from a compression neuropathy, because a surgeon can only improve a mechanical compression of your nerves and can not alter a metabolic problem with the nerve.
However, sometimes patients can have both a metabolic nerve problem as well as a compression of the nerve. For instance a diabetic with diabetic neuropathy can have carpal tunnel syndrome as well, and a decompression of the carpal tunnel would help the patient greatly with his or her symptoms, although it would not change the diabetic neuropathy part of the problem, only the compression neuropathy part of the problem.
Sadly most physicians are only willing to treat patients with medications like neurontin and lyrica, which treats the symptoms (sometimes) but does not change the cause of the problem.
Also many physicians are not very well educated about the additional options and studies which have been published in several centers showing the progress that has been made with peripheral nerve decompressions. In patients who are good candidates 85% has an excellent outcome and no longer has any pain, or greatly improved pain symptoms.
**
dr swier

I understand completely what you're going through. I'm a 1 1/2 into my experience and, unfortunately, it keeps progressing a bit a time.

I started on Gabapenton about 9 months ago. Initially a small amount, but now I'm at 2400 mg per day. It took me bit to adjust to the sleepiness, but got over it. You, too, may adjust. I'd stick with it a bit and see if you can adjust, too. I believe gabapentin is much cheaper than some of the newer alternatives. Since you don't have insurance, this may be a consideration.

I'm still searching for the best shoe solution. Every so often, I have to stand a lot in a single day (like yesterday). By the end, my feet are killing me. But as soon as I can lay down a bit, they do improve.

I wish you all the best. I'm still trying to figure this out for myself, too. I'm not even quite 50 and not looking forward to this for the rest of my life. But, it appeas to be the hand that I've been dealt.

Regards...

I am so sorry you too are living with this terrible painful illness. It sure doesen't seem wonderful thinking about your future does it. Are you still able to work? I am presently out of work, I do clerical work such as receptionist and some days I wonder how the heck am I going to work feeling like this especially with my feet swelling all the time too. I am just 51.
Can you recommend any comfy shoes you've come across?
I will continue the meds as Dr said they should help more, take more as needed and be PATIENT! Easy for him to say

try crocs thats all i whear.............bill

Hi everyone, I am new on this site and don't know how to navigate it quite yet. Hopefully this will get out to you, and I'll be able to get the information I'm looking for and the much needed help that may come with it. The problem is peripheral neuropathy whose main cause is Sjogren's Syndrome. The patient is my 77 year old mother. Her main and worst problem is constant horrible burning of her lower extremeties. At times she swears her whole body is burning up! We have exhausted every known remedy, at least the ones the doctors have suggested...Lyrica, Cymbalta, Neurontin etc. with no results. She is literally as are we her family, at our wits end. She suffers and along with her we too, every day. I feel that I have lost my mother, because she seems to be in her own world, because of the constant burning etc. Please if anyone has any information, please respond. I, she are desperate! Thank you!

Dear hloutos,
I would start with a visit to a neurologist. Be aggressive and make sure your mother gets adequate pain relief, whatever is required to make your mother comfortable. The light weight stuff gave me no relief at all! This is a very painful condition .(I relate my pain to being bitten by a poisonous snake, burning and stinging are unreal) Best of luck to you and your family.

Woody

drswier,
Welcome to the forum.
It is always nice to have a professional aid us, in our questions and discussions.
Have you joined us merely as a professional who treats PN, or
are you also sufferer, along with us ?
My PCP has a very close friend who has PN, and has become quite empathetic
to my questions, personal research, and needs. She is very open to discussion and treatments.
It is comforting to know that I really have someone who understands what I am going thru.
Again, ... Welcome !
Its good to hear from you.