United Brachial Plexus Network, Inc.

Hi all, it's been a while since I posted. But the beast (Parsonage-Turner) rares its ugly head about once a month. While the pain in my affected arm never goes away, which is unusual for PT, I am experiencing very painful flare-ups that most of the time come out of nowhere or I might try to raise my arm up a few times and then I am bed-ridden with pain anywhere from 2-5 days. I am still not convinced that I don't have nerve compression or a stretch injury from surgery 2 years ago.My EMG is positive for nerve damage, can't nerve damage cause pain? This is so frustrating, I have tried physical therapy numerous times, but have had to stop due to the pain. The pool is the only method that does not kill me. I am still not working after 2 years. This injury is wicked!!!

Yes, I too get these flare ups and they are hell. The pain thats all the time is bad enough but what you're talking about is much different and I know exactly what you're talking about. It seems like every time I try to work my arm out, I cant sleep for the following two nights! This pain is much different than any other pain that comes along with this injury and if you asked me is by far the worst. I dont have any really great advice on what to do to get through this seeing as how the only thing that really gives me any releif from this is not exactly legal(even though I think it should be in some cases). I have tried all kinds of medication, most recently neurontin which did nothing for my pain and made me feel stupid when I ate 100mg and they wanted me to take 1800mg per day!!! I didnt even try the amitryptaline(pretty sure thats how you spell it) after the neurontin because they said it only worked if I ate them together so they can keep the stuff.

sorry I dont have any miracle fix but I feel your pain!

-Evan in Illinois

There's Neurontin (gabapentin) as mentioned, then Lyrica (pregabalin) which works better for many people than the Neurontin and won't make you feel foggy/forgetful, and is taken at much lower doses than the Neurontin is given at to work...

And the amytriptalin or nortryptalin (any of the tricyclcic antidepressants) should be taken at night only as they put you to sleep. They are given at LOW doses unlike when they are prescribed for depression. And, no, they don't actually need to be taken together to work, though the additive effect does make it work better.

You can also try, heat packs if you can tolerate heat on your arm (some people can't). Also TENS machines work for many (again only if you can tolerate the sensory feeling of it).

Cold weather, stress, having your period (if you are a woman obviously), illness like the flu/colds/infection, can all increase nerve pain.

Yes, when there is nerve damage you can have pain as well you can have NO pain, it all depends on how the nerves were damaged and the amount of recovery there was.

Marieke RN
33, LOBPI

Thanks Evan, yeah I've tried just about everything myself and can't tolerate it. I've started cymbalta and it seems to help, along with Lidoderm patches and a TENS unit. When these flare-ups hit all I can do is lie down, rock back and forth and wait for it to pass. Oh well, it certainly helps when kind people like yourself respond and I know I'm not alone.

Any time robin, and it is just as helpful for me to read that there is someone else dealing with what I am dealing with and to know that Im not crazy and not the only one in this situation. It is quite scary to be going through this at this point in my life. Oh yeah and I also tried cymbalta and it made me feel like I was in a dream. weird huh?

thanks,
Evan

I can varify that we adults get flare-ups ongoing all of our lives. We do what we must ,therapy of choice, & never are too suprised when one occurs!!

Roll with it--;)
HUGS to all,
Carolyn J
LOBPI/70


Message was edited by: Carolyn J