United Brachial Plexus Network

Hi Folks


I am a 48y/o/m with a left OBP rupture that is a considerable amount smaller, poor circulation and with only 25% usage if that much.
I have followed this forum and posted a few times but my question is
DOES ANYONE HAVE PAIN IN THEIR BP ARM THAT IS TOTALLY CRIPPLING, PULSATING, TEETH GRITTING, TIRING, ETC.???????? The arm has never been without pain and it takes fits of pain that will last for a few days but will rip the he!! out of me for a couple of mins. and than stop. This may happen 10 times an hour or more during the day or two flare up.
I have seen many doctors for this inc. neuros., orthos, acupuncture, etc to two surgerys. I have had this pain since late teens and the attacks are getting worse.
Any halp would but greatly appreaciated

Thanks
Any he

I have always had pain also. Please go to a pain clinic. It is the only thing that has ever helped me. I have been on all kinds of meds in the past. This doctor found the one that helps me with out the side effects. I can actually function while taking this med. If you are not happy with your doc .Keep searching. there is help out there.

Hi merv,
I'm 49 years old and have obpi that affects the left arm. Your discription of your arm sounds very similar to how I would discribe mine. Well... I take the "no meds" route. Is it better then taking pain killers?... I don't know, but I don't want to take meds the rest of my life for chronic intermittent pain because 1. I know the pains wont ever go away for good and therefore 2. drugs used over a long period of time can cause other more serious health problems like kidney trouble, liver trouble, etc. etc. Your discription of the pain - it's like you were discribing my pains. I get pains in the neck, shoulder, arm, hand and left side of my chest. The pain gets more and more intense until I occassionally actually yell ouch. Then it seems to go away after a while but I almost always feel some, what I would call, backround pain and discomfort. Compare to the intense pain episodes the backround pain seems almost un-noticable. I hope this helps.

http://groups.yahoo.com/group/ERBSBPP

I've never had pain like this until more recently -- I believe it's my own fault for not getting exercise. It's not the same pain as yours, obviously. Mine's just a dull ache/throbbing and I have to rest my arm on a pillow.

The only pain that I have had lifelong has been when my arm is hit in any way. Hit, slapped, pushed, or banged on anything, even softly. It's excruciating at times.

Gina

Gina

This year at camp UBPN in Lake George Dr. Belzberg explained the reasons for the "painful touch" that all of us complain about.

Just to be brief... when someone touches your arm it sends a message to the brain that you are in pain. It is the neurological disconnect and he said that is common... boy were we happy to hear it was our brain getting the wrong message and we cannot control that... So the answer is "Don't touch my arm you are hurting me!" He also explained why many complain about our arms being so cold - it is poor circulation.

As for the pain you are in now you probable need a good physicial therapist. One who understand bpi not just any one... I used one in northern New Jersey because he listened and I brought material on OBPI ... All the therapy for three years increased my range of motion and helped with the pain...

Kath

Is the camp at Lake George every year? I think we're now fairly close to there. I would love to go next year.

No one really believed that my arm was so painful. I had so many nurses give me the "whatever!" look when I told them I couldn't get a shot in my arm, IV's or have blood drawn. It's very uncomfortable just to get a my blood pressure taken too.. mostly because of the bent elbow I suppose.

Some phlebotomists would just grab my arm and try to manipulate it and bark at me to relax my arm. I learned to bark back and just laugh

The worst part is crying out at my kids and husband when they bump, pinch, accidentally hurt my arm. I don't mean to, but it catches me off guard.

Friends and family never seemed to understand when I was growing up.

At any rate, at this point the gym is cheaper than a PT. I should at least get back into my working out routine so I can get some flexibility back. I'd also like to get back to the chirpractor for this neck pain.

Thanks Kath -- you've brightened my entire day with your posts.
Gina