After months of visiting various Doctors...having looks at me as if I'm crazy...and trying to do it without drugs...I was finally told I may have 'polyneuropathy'. What does that mean???

I'm finally trying Gabapenin along with too many other meds (synthroid, diltiazam, coumadin, B12, vit D & fish oil). I have another exam tomorrow and hope for help from this horribly painful mess!

From my hips down to toes: cramping + 'pins & needles' + 'electric pepper' + tingling + Burning + Freezing. Even my face, scalp, belly, & hands get involved with this horror! I've missed so much sleep through this that I drag around too much...push myself to keep doing all the chores, yet often feel I'm not thinking clearly.

Other problems are: atrial fibrillation, degenerative disc disease in my neck, buldging discs in my spine, and osteo arthritis.

"GROWING OLD IS NOT FOR SISSY'S"

Blessedly, my loving husband has supported me through this.

Well welcome....and, no this isn't aging, it is a disease. They know very little about PN, in my humble opinion.

No you are not crazy Grannygrits, even if this thing called PN makes you feel crazy. I agree with cyclelops it is something that people have little understanding of. Anyway you have come to the right place and you will learn a lot from all the wonderful people here at Neuro talk.
Take Care.

I can relate to everything you are saying. I agree with the others that doctors often have no idea the why and how to help. I hope today your exam can give you some direction for relief. As for sleep I have such a horrible time as well. Have you looked into sleep meds to help? Or a med that is for even mood and that helps for sleep also. Sometimes my mind is so cluttered from the pain and life I feel like I will loose it and have made poor choices due to that. Now what I try to do and it is easier said then done but take a deep breath and self talk on how I can get through in a healthy manner. I try to keep my stress down as much as possible. Obviously again easier said then done. Sending thoughts

The latest name of my pain in "idiopathic poly neuropathy". My primary care Doctor increased my gabapentin & put me on an antiviral 3 times a day for 7 days because he feels I may be suffering with some nerve problem steming from having "shingles" a while back. We shall see....

Welcome to NeuroTalk.

How long have you been on Diltiazem? And what dose?
I ask because this drug can upset calcium metabolism, and give leg cramping. I take this drug, and when I don't eat calcium rich foods I get alot of muscle problems with it. Also swollen feet sometimes and that is at the lower end of the dosing range.

So I would make sure you are getting daily calcium and also balancing it with magnesium which will also reduce cramping.
Low calcium will cause paresthesias, as a sign. I can get leg cramps from diltiazem. I take 1000mg of calcium when this happens.

How much Vit D are you taking? Did you get tested first? Vit D will improve calcium absorption from food.

I'll be interested if the antiviral works for you. That is very perceptive of your doctor! Herpes Zoster can remain active and cause alot of pain/grief. Another aid for this is l-lysine. Improving the ratio of lysine to arginine, can help keep the Zoster virus dormant. You could try adding about 1 gram a day of l-lysine as well.

We have another poster here, Ivpound, who was on Coumadin and had alot of burning. At the time I searched the literature for him and could not find a published connection to "burning", but I wonder if that is a factor for you too? He tested low in Vitamin B6 as well. You never know with drugs, as there can be unusual side effects that are unique to small numbers of people and hard to trace.

I've been on 240mg caps of 'diltiazam' daily since Feb. 27, 2010.
I started 2000 I.U. of vitamin D early in Feb when Endrochronolagist suggested it, and went to 4000 I.U. a couple of weeks ago.

I quit taking calcium long ago...I thought since I'm a daily milk & cheese person I didn't need more constipation problems. I have to do extra prunes daily now. Don't know if stool softener will mix with all my meds.???

This crazy mess really started last May '09. My atrial fibrillation started occurring too often & I decided it was time to have it checked. I hadn't been taking anything for years...many years had taken ace inhibitors, then calcium channel blockers in the 90's, decided I didn't think I needed them any more, I griped a lot, and my Dr. said I could quit---So, I did!

My burning cramping legs started in Dec. '09

When my afib went 'bonkers' in Jan, after 2 ER visits, and they had to stop my heart twice trying to get 'sinus', I ended up on diltiazam. They decided it was the Levothyroxine (synthroid) 125 mg that was causing my grief, so they monthly tested and decreased me down to 75mg now(+ 240mg diltiazam + Gabapentin 100mg each morning & evening + warfarin (coumadin) 5 MG daily except Wed & Fri take 7 1/2 MG + 1000mg fish oil + 4000 I.U. vitamin D).

Since May 13, starting the anti-viral (valacyclovir 1 GM, 3 X a day for 7 days) I have felt the burning, pin & needles & 'electric pepper' STRONGER again. It is so depressing & frustrating to feel like a 'guinea pig'.....

I also find that calcium channel blockers are mildly constipating too.

Parethesias often come on when calcium levels are low. So I'd take a good calcium supplement daily...the Vit D should help you absorb it well.

You're so kind to make healthy suggestions for me.

Last night--day 6 on the antiviral--I had the worst night so far. I woke up at 1:am with horrible BURNING, pins & needles, electric pepper, buzzing vibrations OVER MY ENTIRE BODY--front & back!!! I was in agony for almost three hours before I began the 'cold' phase, where I get the chills so badly. In the past the 'awful burn' usually was on the front of my legs & face, and painfully covering my feet.

My husband has tried to comfort me, the Doctors don't know how to help me, and I've suffered the seven month 'trial by fire' mostly alone because I hate to wake my 'honey'--he needs rest without worry.

Please...If you or anyone can direct me in the right direction to get real relief, I'd be so very grateful.

There is a thing called the Herxheimer reaction. This happens when the body cleans up invaders, and that releases toxins and purines into the blood stream. Often it happens during Lyme treatments, but any infectious process can cause it.

http://en.wikipedia.org/wiki/Herxheimer_reaction

I have had people over the years call me up with a Herx reaction that starts typically after an antibacterial begins working.

I wonder if this is what you have?

I wonder if consulting an infectious disease specialist might be a good idea for you. You might have some obscure infection that has not been identified yet.