New to Board...Looking for help

[admin]

This is my first time posting on this board. I’ve had Erb’s palsy in my left arm and I just turned 35. I’ve managed to do Great in my life with Erb’s palsy and I hope to find out more about it. Does anyone ever experience a nervous surge type feeling that goes through your arm? It does not hurt but I can’t sleep or concentrate when it happens. I would like to find out if there is anything out there that can help me with this.

Thanks

[Kathleen]

Hi Katrina

Welcome to the board.
I answered you post before but it was only a Guest ...so I will answer again...

I was thinking about this and remembered that when I had that feeling in my arm I tap...

I take the left hand ( the un injured one) and with my finger tip all together just tap up and down my arm ... It seems to distract or relieve me I am not sure which...

Have you had any treatment ? Could it be that you are sleeping on your arm or with your arm in a comfort position that causes this? Is your arm COLD and could that be what is waking you up?

Tapping seems to work for me when MY arm acts up but since I have been back in PT for a while I no longer have all the arm shocks... PT has done wonders for me.

Kath

[Katrina]

Hi Kathleen,

Actually I have never been in PT. When I was young I joined the band and played the clarinet. My music teacher at the time showed me how to squeeze a ball to work the muscle out. Since then I’ve been the captain of the drill team and currently I am a computer programmer for a major automaker. The funny thing is that many people don’t know I have this disability until I am asked to do things I cant and I have to go into the LONG explanation of which they do care to understand...LOL

Again...Thanks!

[Kathleen]

Katrina

Just this past weekend I went to a gathering in NY and attended a lecture given by Dr. Nath from the Texas Childrens hospital... I learned so much about this injury.

Since we are injured at birth we know so little about the injury. If you have an opportunity to go to a Picnic (gathering) go... it is a great place to meet others who truly understand what you are experiencing and can often help you with Physicial Therapy information and perhaps ways to prevent overuse on the healthy arm... they do wear out since we only have one strong arm to use.

I had to retire from work because of it...

A few years ago I attended one of these gatherings and met other adult/obpi and a few tbpi. It was amazing to compare notes on how we functioned and how our arms work... Many us compensate in the exact same ways to function...

This lecture taught me many interesting things that I have not read anywhere nor have I heard before.

I learned that strong pressure on the neck is a real no... no... and carring your Pocketbook on the BPI shoulder is NEVER... doctor Nath told me because I had it on my arm when I was talking to him....
LOL... ( I carry mine there to hook my hand on so my arm is comfortable and not just hanging)

The parents are so well informed at this stage in their chidrens lives that many of them answered so many medical questions for me when I first found UBPN.

Kath

[Erica DeAnn]

Hi Katrina! I don't post too much on the board (only have a computer at work), so welcome to the board! I'm 25 with OBPI in my right arm. And yes...I get a very bad surge of pain/tingly feeling in my affected arm. It only happens a few times a year...oftentimes when I'm sick. I too find it nearly impossible to concentrate.

For some reason, I haven't had it in a long time. I think that may be because I go to the chiropractor once a month. I get electro therapy on my un-affected shoulder and back. Since we overuse our good arm, it gets sore. But they often put the electrodes on my affected shoulder and I'm thinking this has been a preventive action in not having my BPI arm pain.

Before that, I would have to take a Darvaset...a prescription pain pill. It was the only way I could relax. (And boy, does it make you 'relax'!!!!!)

Good luck, and again, welcome to the board!

Erica DeAnn

[Katrina]

I did not know there was help out there. I just suffered through it. I sometimes drink wine or take a sominex (OTC sleeping pill) until it’s over. I am going to speak with my doctor about PT.

Again thank you SO much!

[Katrina]

Thanks for your help. I live in Cincinnati Ohio. When and where is the next meeting?

[christy]

Katrina, we have a wonderful lady named Karen that normally takes care of the Ohio stuff--you are not far from her, she is in Columbus. We too are about 3 hours from Cincci. The picnics are normally the first part of June and Karen does a fantastic job. Sometimes I think she has one in October (no docs or anything, just fun!) but haven't heard from her yet regarding that this year. Hope to meet you at one of them! You'll recognize us...three worn out people and one perky little blond that is as wired as a tornado and eyes as blue as the sky.