Fibromyalgia Support Group

Does anyone else have peripheral neuropathy along with their FMS? I have had it for several months now, but it has not been too problematic til lately. Just when it seemed I was doing better, I feel like the rug has been jerked out from under me, again. This afternoon I was yelling at my kids, for no good reason, and I realized that I had been hurting all day long, again. It had been pretty much limited to my hands and feet, but today I started to have the burning, tingling pain in my lower left leg as well. I had even seen my primary care physician today and talked to her specifically about it. She gave me a new NSAID called Zipsor(diclofenac)to try, but it hasn't had time to work, I guess. It hurts more to sit than walk, but a lot of my job is sitting at a computer. Any survival tips that anyone would care to share?

Thanks for listening everyone. I'll check back in tomorrow with an update. Hopefully to Zipsor will be helping by then.

Sherry

Post edited by: tennsherry, at: 10/20/2009 04:29 PM

I have periphrial neuropathy, too. Have for several years.

The best thing I have used (still am) is Neurotin. I take 300mg morning, 300mg evening, and 600mg at night.

Of course, I built up to this level over the years.

At first it made me very sleepy. I do not have that side effect anymore, haven't for years.

If I miss a day, I begin hurting badly.

Sometimes I have no pain, the norm is well controlled pain.

There are many meds out there, the trick is finding the one that works well for you.

I hope you find one soon.

Hugs

Hi honey, first I am really sorry you are having so much pain. I am curious why you are on such a new NSAIDS rather than one with more of a track record-that being said as long as you know the side effects and are cool with them, and they are the same side effects as most NSAIDs....

but it can take a day or two to bring your blood levels up to par.....

maybe a week.....

Have you asked about any medications with codeine or hydrocodone? Used in conjunction with the NSAIDs?

You might want to discuss them as an adjunct to your medication regimen.

Best wishes, I really hope you get your medications under control and that your pain gets under control too!

hugs

Natalia

I have polyperiphial neuropthy of unknown origin. Meaning they don't know why. I haven't found anything to help. Mine comes and goes. I was doubled on my lyrica for it back when I was taking it.

Thanks everyone! I will write down to ask my Neurologist about Neurotin next week. Lyrica made me sleepy and kind of aggressive when I took it last year, but who knows, it might help now. Me and pain meds have a weird relationship. Tylenol with codiene or hydrocodone doesn't really do anything for my pain, and I don't even get to feel funny when I take it. It's like a sugar pill or less. Percocet worked for the first dose, like everything else, then it was like my body adjusted and it just wasn't any help after that. Sometimes NSAID's help, sometimes not; mostly not. So, I do not hold out much hope for the Zipsor, but maybe I will be pleasantly surprised. Thankfully or not, I have a high pain threshold. My partner always says that 5 on my scale would be a 10 on anyone else's, and she is probably right. I broke down tonight. The burning, prickly pain extending up my left leg is awful, and sometimes I wonder just how much pain even I can take before breaking. Thanks for the suggestions and support.

Sherry

I also take hydrocodone. It is for RA and Psuedogout but it helps the pain of neuropathy to an extend.

Neuropathy is nerve pain that is why neurotin and others like it help so well. It addresses the nerves.

I took Lyrica for awhile and hated it. It made my hands and feet swell. I tried Topamax and it controlled the pain very well but it messed up my mind. Made me very aggresive and cry alot.

Neurotin is best for me.

Hugs

I have it too, Sherry. It's one of my worse symptoms in all this. I take 1200mgs Neurontin daily ~ 600 in the am and 600 at night. It helps some. My doctor also prescribed diclofenac but after trying it with no result, I stopped and went back to OTC ibruprophen. Oddly enough, baclophen (a muscle relaxant) helps with the nerve pain in my arms and hands. Not my legs, though. I'm still waiting for my doctor to call with her decision on prescribing Suboxone for me. I'm hoping that will help.

Good luck to you!

Boy, what fibromaniac, including me, wouldn't give a fortune X2 to have your pain reflexes!!!!!! I wonder that your doc felt you had fibro at all. But the neuropathy is so terrible and so pain ful, I am so sorry that you have to suffer with that.

Sounds like all the rest of us, the body accepting some things ,rejecting others. I hope your doc listens since there are already so many combos of medicatins you have tried.

Let us know how your visit goes and what you try...and what works....

Best wishes and prayers for your pain

hugs very gentle ones

Natalia

I meant to ask if you have diabetes? Then the peripheral neuropathy would be scarry, but my understanding is that with us fibromites the peri[heral neuropathy is painful but more importantly no real damage is taking place in the periphery.....

hugs

Natalia

You know, this is the first I've heard of peripheral neuropathy being connected to fibro. I have that problem but thought it was from something else. This blows my mind. This makes me even more angry at previous dr's that have absolutely not looked out for me in the least. I'm still trying to find a regular physician to care for me here in TX and haven't seen the first specialist for fibro. since I was diagnosed last april!