United Brachial Plexus Network, Inc.

I'm not sure how to convey what I would like to say, but I'm going to give it a try.

I think we need to be very careful about how pain is perceived for those of us with a bpi who have a high threshold for pain. It takes a lot of pain for me to feel it and I usually don't even take medication following surgery. This usually serves me well, but it can greatly hinder medical intervention when it needs to happen when dealing with other issues and I want you all to be aware of this.

I have just gotten out of the hospital where I have been treated for the past several days for an acute attack of diverticulitis with a round of IV antibiotics and careful monitoring. I had surgery for this almost two years ago and know how serious it can be.

When I went to the ER last week, all the symptoms were there (my primary care physician sent me to the ER, btw), but because I was 'managing my pain well', the ER sent me home but told me to return if things got worse. Well, they did get worse, very quickly, and I returned, but it could have been caught much more quickly and easily if they had listened to me. They presumed because I was not screaming with pain (this is a most painful situation for most people) that it was not that serious.

When I went back the second time, they did the blood work and the CT scan and saw how dangerously close to possible rupture I was and admitted me immediately.

It is an irony to me that I can't stand the slightest sensory abnormality on my skin on the bpi arm, because it is super sensitive to fabrics and plastic (including plastic threads) but that pain isn't felt at the same levels as most people when other illnesses happen.

I just wanted to bring this to your attention as something to be mindful of either for yourself or for your children. When they complain of pain, it probably really means that they are feeling it!

Nancy Birk
UBPN President
LOBPI, 52 years

Nancy, thanks for sharing that important piece of information. Hope you are feeling better as each day passes.

Thank you, Nancy, for bringing this up. I think it is very important to be aware that our kids that are complaining of pain could be experiencing it at a much higher level than we might think.

I hope that you will rest and recooperate without any problems.

Take it easy!

Peggy

Nancy
Thanks for posting this.

Pain is something many of us have always had and I guess in some ways we are use to it.
As we can see from this event it can be very serious.

Hope you up and about soon.
Kath

Nancy
Funny you should mention this as just last week I wanted to post about how Aaron was not his usual active self and so I felt his forehead/face and he was hot. I took him temp and he was at 103.4 YIKES!!! I gave him a warm bath and tylenol chewables. All the time he's telling me "mom, I feel fine, I'm ok". It just shocked me to see that he has a high threshold but really it saddened me to know that my son is so used to pain and bothers.

Hi Nancy,

I sure hope you are feeling better now.

Joanie

Thanks Nancy, I sure hope that you are feeling better by now. That is something good to remember that these kids don't feel the pain as those of us without BPI would. Brandon had a similar experience with a 104 fever that sent us to the ER........all of a sudden the arm stopped working and the fever came on and he was feeling fine........he had strep !!!
Get better soon !

Nancy-
I'm so sorry that you had to go through all of that! I hope you are feeling better.
You bring up a very valid point. We've all learned to manage our pain so well. It's very hard to describe the amount of pain we are in.
Keep Healing!
Cyndi

Thanks for posting this Nancy. I notice this stuff too, after surgery I usually am nothing more than tylenol if that. I remember for one of my surgeries I took 2 tylenol for a headache, never for any pain in my arm.

I wish I did have "normal" reactions to pain every thing would be a lot easier to explain.

Hope you are feeling better!!!!
Hugs,
Amy 18 ROBPI from MN

Thank you for sharing this. I have a son who is LBPI and is 7 years old now. He has a very high pain tolerance and since I am aware of that we do have more doctor visits then other kids. But everytime I have taken him to the doctor, they all tell me they are amazed that he is not screaming. Here are some examples, Last Feb he took a fall on his BPI arm at religious school recess. The teachers said he cried a little but then was fine. He went on to play. The next day, I noticed his collar bone was sticking out. He then complained of a "little" pain. Well, after tests and dr. visits, he was diagnosed with a grade 2 shoulder seperation. His collar bone actually moved about 2 inches. This is the type of injury professional athelets get and is usually not seen in kids. The doctors said that it is very verypainful. My son did not really complain of any pain. Example 2, My son had constant sinus infections and ear infections. At age 4, it was decided to take out his adnoids. The night before his surgery, he had fluid coming out of his ear. He was not complaining of any pain at all. I called his Dr. anyway and they said that if he ruptured his eardrum he would be crying. The Dr. did scheduled an exam while he was under doing his adnoids. When the dr. came to us in the waiting room, he said he was glad that he scheduled to look at his ear. He did infact rupture his ear drum and needed one stitch inside his ear.

Whenever I take my son to a new dr. the first thing that I tell them is that he has a very high pain tolerence.

I am not sure if this has to do with BPI or maybe just the tramatic birth, but he also is one of the first to get flu, strep throat even got a amoxicillian resistant kind last year.
Sorry so long, but I too agree that we must be careful with our kids when it comes to pain tolerance and other illnesses. It is a good thing that we have the same peditrician for 4 years now. She is definatly more cautious with him.