United Brachial Plexus Network, Inc.

I am 22 years of age, and I have Brachial Plexus in my right arm from birth. The doctors told my parents that once my arm was strong enough I no longer needed therapy. Also, the nerve damage would not effect me as I get older. When I turned 16, slowly I began feeling short pain through out my right arm. Over time the pain has spread and is slowly getting worse. I would like to know if anyone else has experienced this, and what treatments are available.

Kerrin

Welcome to the message boards. When I found this board I was sure I was the only one with this birth injury.

One of the things that I did was read all the Awareness material on the home page.http://ubpn.org/awareness/A2002quickfacts.html

The key to understand our injury is education... and by that I mean read all the information and especially the information pertaining to babies... because that is what happened to us.

As for the pain I did experience it most of my life I would get shooting pains and my back would go out...
I am just finishing a round of PT... it has helped me a great deal.

When I was old enough to take care of myself I resisted any form of PT... did not think I needed it.
I swam ( but we need very warm water) that is one of the best exercises to keep our arm moving...

I found this message board 3 years ago and it really opened my eyes as to what I needed and did not need. I realized that most medical professionals have had little to no experience treating people with our injury and that I needed to educate myself and be prepared when I was examined to ask questions. I also realize now that I must do range of motion exercises and have regular checks for possible loss of range...

I am completing another round of PT... and it has made such a change in my life. I can now move better and am not so tight it does not cure us but can make life much less painful...

Please check on the home page for a medical directory
it might help you to find a bpi specialist in your area. Make sure the doctor you see has experience with OBPI.
http://ubpn.org/medicalresources/

Kath

Hi Kerrin, Welcome to the board. I am 41 robpi. I experienced alot of pain in my teen years and I still have some today. Therapy is a very important to keep up with. I found when i slacked on my therapy my arm and shoulder would hurt more.I now use a pain patch called lidoderm for my shoulder. It seems to be helping.Feel free to e-mail me if you have any questions. Judy

I get sharp pains in my affected arm, too. I now take a drug called Neurontin, which is supposed to target nerve pain (as opposed to pain that regular pain killers like tylenol with codine might help with). Amputees with phantom pain take it, as do epileptics. So far its helped a lot.

Hi Kerrin! I am 25 with right OBPI, too! I get very bad shooting pains in my right arm....but luckily, only a few times a year. It often coincides when I'm sick with a cold or flu.

Last year, I started seeing a chiropractor for my unaffected side....shoulder pain from overuse. They use electro-therapy and that helps even the BPI arm.

Good luck and welcome to the board!!

Erica DeAnn

Erica,

Have you ever figured out why it has to do with when you are sick? That's exactly when I get it (as well as when I'm stressed out or overtired), and it seems odd to me.

Carolyn

I get more pain when over tired and when stressed and also sick...

But the weather is making a big change here and the cold really bothers me on the bpi side only....


I can't figure that out... but glad to read that I am not nuts... LOL...

Kath

Carolyn,

I have NO CLUE why that happens more when I'm sick! Weird that you have the same issue! Maybe it's because our immune system is weaker. Or maybe it's just because when it rains....it pours!!

Take care,

Erica DeAnn