United Brachial Plexus Network, Inc.

Hello, all. It's been quite a while since I've "been here." Anyway, I'm looking for some insight. I posted this on the general board, but thought it'd be helpful to post her as well. Thank you in advance.


Okay, here's a new one (new for me anyway). I keep learning more about this injury as Nicole gets older and communicates better. Today I was doing Nicole's hair, which is a long and difficult process (she's bi-racial and was blessed with hair more like her Dad's). Anyway, at one point when I was doing a braid, it hurt her and when she said ow, she grabbed her left (BP) arm. So, I asked her why she grabbed her arm when she said ow. She told me that it hurts her arm too when she gets startled like that. I was pretty shocked b/c not only did I never know that, but I don't even understand. Anyone else ever experience this? Thanks.

~Tina, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. c/s)

Tina
I did not see the post here but answered you on the General Message Board. But here is a little more info.

At the Pain Clinic last year Dr.Belzberg explained the reason I get a pain message and annoyed when someone just touches my arm is due to a scrambled message. Gentle touch sometimes registers Ouch! your hurting me... it was funny because Ralph and I have argued because he touchs my arm to talk and I say Ouch... he of course says I hardly touch you... my brain says he hurt me... Thanks to Dr. B this is no longer a problem because he understands now.... And finally so do I.
I think I startled more due to sensory issues. Just my opinion but we all have little hairs on our body that feel the breeze or presence of someone near us... I have losse of sensitive touch on that side so I guess I don't have the preception of someone next to me... but that is just a guess on my part.
Kath

I used to get that too, now I get a "weird" feeling (hard to describe) when I get nervous/anxious in my left arm (the affected one). It is strange but she is not alone.
Hope this helps!

Yes! I get that too! When I'm driving, if I have to slam on the brakes or something like that, I get a sharp pain up my OPBI arm. I always thought it was because, in a crisis, my brain sends the signal to my arms to take action, but in my bad arm it comes out as pain.

Me too!! Pat

Thank you all for your input. It is very interesting to learn more about this. It's hard not being able to feel what Nicole feels and trying to figure it all out as I go. ~Tina

Tina, I just had a flash back and thought I'd share! When Brittney was very little I remember us sitting on the floor and talking and I told her that SHE was the one with the arm injury and she knew more than I did about what it felt like to have an injury - and that she'd have to help ME to understand so that I could help her. It was before I found these message boards and I thought we were the only ones out there dealing with this injury. We had a heart to heart - she must have been between 2 and 3 years old. I asked her to please explain everything to me - every pain, every feeling, because I was clueless - she was my first born - and I just didn't know what was normal- what wasn't normal, what might hurt - and I think that after that talk she did help me to understand better what her feelings about things were because she knew that I needed her to help me - to help her!
Anyway - just thought I'd share - just a flash back of that day with us sitting on the floor and talking.
Christy