United Brachial Plexus Network, Inc.

How does everyone here deal (or dealt) with their pain? I had five avulsions in a car accident a little over six months ago and the pain gets to be nearly intolerable at times. Any comments or suggestions would be greatly appreciated.

gosh, were do I begin. I have 3 alvusions and I have been 20+ years of this injury. Some say it gets better after years. I have to say "um, no!". Every one has a different level of pain. Not any two people are completely same. Even if they have the same nerves effected. I tried everything-you name it-I tried it. I can not take drugs, but I tried them!!! I find heat is a relief, a hot tub. I live in Northern Illinois and cold and dampness is the worst. There are so many things to try. Hopefully you will find your cure! But as one doctor said to me (and I wanted to punch him in the face-he is a VERY well known doctor mentioned on this sight) "there are many people with your injury that live long painful lives, there is nothing we can do for you!"
Many people take cocktails of drugs; if thats what you need then thats what you need to do!
Good luck-I can completely relate. The pain is worse than the injury.

Thanks I am appalled that a Dr would say something like that to you, I don't blame you I would have belted him/her.
Anyway that doesn't sound very promising. I suppose I was hoping for something better than a life of constant pain...

Pete-depends on what you are taking right now as to where you can go with meds. For instance I take 1300mg of Gabapeten x 3 a day. It helps with the neuropathy.
Then (among a whole boat load of other stuff...) for sleep I take 15mg of Tamazepam, a Soma and a Hydrocodone.
When I'm not sleep walking I am deep asleep, for hours, without moving. That is important because you don't need to roll over and break your arm.
Good luck with all this. I'm curious to know what works for you ok?
Scott

I am talking about the neuropathy,which is pretty much constant

There are various meds used for neuropathic pain.

Neurontin (gabapentin), commonly used, but has side effects that many people do not like (memory problems).
Lyrica (pregabaline), often works better and at lower doses than the Neurontin.
Low dose tricyclic antdepresants are used as well, usually at night as they can cause drowsiness.

Combining any of these meds with low doses of narcotics helps as well.

TENS machines, accupuncture, heat (hot tub or pool) can help as well.

Marieke 32, LOBPI and Transverse Myelitis @T1 since 2004
RN

Thanks,
I am currently taking Neurotin 600mg 4X and Oxycodone 10mg 3-4X. These help a little, but I really don't want to become dependant on narcotics. I currently don't have any side effects. Also, the pain subsides at night or when I am sleeping so I am fortunate in that respect.

like I said, as you read the other responses; drugs is all that is offered for our pain. I am waiting for the day they can do something surgical to get rid of the pain. NOT Drez-stay away from that. Like I said, 20+ year of having this injury I have tried EVERYTHING, or seen doctors for pain or researched pain relief. If you are OK popping pills 5x a day and it helps-that great. I do not take drugs, I tried them.
Good luck....................
Kathleen

Hi Kath. I congratulate you for hanging here as long as you have. Good Lord I don't know if I can. Although...it seems as though I'm beginning to get numb from the pain. That is it just doesn't seem as devastatingly painful as it was say a year ago.
Where you riding or a rider?
Pete-I also take 50mg Methadone 3 x a day if that'll help you.
Scott

I was riding on the back, my boyfriend was killed.
What about you?