United Brachial Plexus Network, Inc.

Can all of you rate your pain levels for me? Am wondering if Caleb will experience much pain. I've heard TBPI's have more pain that OBPI's, but want to be clear on what to expect. Also, Caleb is surgery free but will be having his first surgery on the 16th. I'm wondering if having surgery lessons or worsens the future pain? Perhaps that is something that can't be gauged.

Kari

Hi.
I am 16, ROBPI. I am not in pain 24/7. I find that certain activies cause more pain than others and if i sit on the wrong type of chair! Ones at school are terrible they hurt so much i dont know why this is but it happens. I have a big soft rocking chair in my bedroom and if my arm is sore i go and rock on it and relax with a hotwater bottle and the pain disappears.

The pain that i get doesnt last for long if i treat it right. Sometimes if my shoulder hurts because ive been walking of standing too long i jst stretch my neck to each side a few times and the pain either isnt half as bad or isnt there.

I havent had any surgeries or PT, OT and i dont think my pain level is any worse that some ppl iv spoken to who hav had medical attention.

I think everyone will experience different types of pain depending on their personal injury. Your son will realise wot hurts and wot doesnt and how to help it. A massage works wonders but its quite hard to relax i find for some reason, my shoulder gets very tense when i have a massage.

Michelle x

I think that obpi's are different because they have lived there life with the pain. Yes, they may hurt, but when they are born with it I think they don't realize it hurts. Maybe ceertain movements or too much activity sill put a strain on it like Michelle said but as far as pain, yes, I am sure they are in pain, but I am not sure they know it.

Mom of a four year old with a ROBPI ~!!

Guest

I never knew how much pain I had till I took Vioxx and realized how different I felt... I could not continue on it... but it was a strange feeling... as children we are constantly distracted thank God and do not focus on pain. Kath

Kari:
I'm a 63 year old ROBI. I have about 50% arm strength and 75% hand strength. Internal rotation is about 25%. I can raise my arm to about head level. I have not experienced much pain over the years. If I had pain as a child, I don't remember it. Throughout my childhood years I had weekly physical therapy sessions plus home PT and my arm was very compliant which may have been a factor. Last year, I experienced a new and persistent pain that lasted several weeks that didn't seem to be muscular in nature. However, a BPI specialist could not identify the cause as BPI related (it had gone by the time I was able to obtain an appointment). I tend to think now that the pain was due to physical activity.

Hope this is helpful.

John P.

I am 32, severe ROBPI, never had surgeries at the nerves, but just when I was 10, to rotate the arm.
I could not say about pain. I don't feel pain, neither in the past. The most uncomfortable thing, is that I feel little muscles moving under the skin sometimes. It's really annoying but it is not pain at all.
Of course the arm is a bit fragile, so I have to take care not to force it, to hurt it and so on...

I am 52, left OBPI.

I have not experienced any pain related to my injury other than VERY infrequent electric shock-type sensations. They have been so infrequent in my life, that I can hardly recall them or remember what may have triggered them. They would only last a second or two.

-Stephanie

ROBPI 49 years old. I think much of the pain is due to arthritis. I also think some of the uncomfortavle sensations are due to one side of the body being a different shaped,weight etc. than the other. Mine is more like a dull ache-- and I don't have it all the time. Pat