Terri, welcome. The advice that your dr gave you about not stopping the meds was good advice. It can be very dangerous to do so without careful titration.

A lot of us here have been frustrated by wrong or not dx. I am sorry that you have joined that group. Pain is also a common thread.

I am not much help to you, but will be thinking of you and will light a candle for you.

Mama

I don't know if you would be interested in looking into this, but some people feel that rheumatoid arthritis symptoms can be improved by being on a gluten free diet. I also use a bipap machine for obstructive sleep apnea and used ambien, but then I found out at a sleep clinic that it actually makes the sleep apnea worse and causes short term memory loss. You can't just quit it quickly, you have to taper off. Right now I am treating my neuropathy with B-complex vitamins, especially B12, and take omega oils for inflammation with the help of a nutritionist. I was on neurontin for many years, but was worried about all the lawsuits against it and didn't feel that any of my doctors monitored it properly. How does the Cymbalta work for you?

Saved my life. I had PN over my entire body...non of the neuros I saw had a clue what was going wrong with me. I progressed down hill for years after my bowel resection for Crohns disease AND an intestinal anuerism that caused severe anemia....then muscle weakness, severe fatigue to where I was 100% bedridden needing an attendent to help with simple basic grooming....I was a mess and only wanted to die.

They did all the NC and EMGss which only proved I had a moderate case, sock glove pattern of Neuropathy...was only given those anti seizure meds that only slightly mask the effects and the sides were mind-numbing....down right nightmarish of a life!
All I wanted to do was be left alone and die! I was then sleeping about 24 hours a day, only up long enough to use the toilet. My husband got a lap top I could use in bed.
I wanted to research the cause of Peripheral Neuropathy as I'm non diabetic. It took me weeks to muddle thru web sites...my brain was not working well at all either.
Thankfully I found Braintalk....Rose educated me about sublingual Methyl B12. My husband found it at a local health food store...within 10 days I began living again, but took time and hard work to gain back what I'd lost. Its been nearly 2 years now and my PN is almost gone! And Im out of bed running a marathon!
Well...not really running a marathon....but I'm soooo much better.
I have zero doubts about the B12 deficiency DESPITE my levels being normal range....find Rose's info on Vit forum here...you'll be amazed!
It really helped me.....I have not a shread of doubt!
I do hope you consider this....and take the proper form of it...can take regulart B12 and won't work....must me the Mehylcobalamin, sublingual form in order to work on your neuropathy! I wish you well.
Blessings, cheryl

CryTearszzzzzzzzz

I do not mean to interrupt this thread but can I ask you to elaborate on sock glove pattern. I have these sensation and have been trying to figure out how to explain and something with what you said struck a cord.

Thanks for any insight.

Nusery. they are all right on the mark about the sublingual b-12. Makes a huge difference. I sure hope you start to feel better.

I think your Psych needs a Psych holy cow is all i can say about that one.
I have Polyneuropathys and had a sleep apnea problem also was on a cpap,
I lost 90 lbs. and was able to go off. Please i am not saying this will work
for everybody we are different. Look up Roses,site my new Dr. was taking
notes from it. I am a diabectic but other things just want to help with the
neuropathy. You do have a lot on your plate,and bless your husband for the
computer,because you found a good place here. Much luck to you and
husband. We are up to our whatever in floods in Mo. makes
me hurt. Always fight for what makes you feel right it's your body,sorry once
again you have to deal with this..Old bag nurse Sue