United Brachial Plexus Network, Inc.

Kathleen,
it was not my intention to denigrate anyone's pain in any way at all and if that is how my post came across then please accept my apologies.
Our group does consist mostly of children although we do have a growing number of adult obpi. Those who complain of pain are " the more mature" members of our group, who are possibly suffering from overuse syndrome and other associated conditions.
They do report pain, but have described it as more of an arthritic pain than the neural pain with burning/shooting/sharp sensations others describe.

I would never say there is no pain with Erb's - I couldn't say that, I am not qualified to do so.
Also, I wouldn't ever say that children don't suffer pain, when obviously they do.
Perhaps our son is different to other children with the condition, following his 3 bouts of surgery he has never had pain relief beyond the first day of surgery and has never cried nor asked for pain relief following surgery.

In fact 2 years ago when he was almost 10 and had his last surgery, we begged him to have some pain relief prior to the car journey home, but he was adamant he didn't want or need any pain relief.

I had hoped to reassure Stephanie that the pain was not inevitable for her daughter, but a possibility.
If my post caused offence please accept my apologies.

Hopefully the children of today who have suffered injuries, will benefit from therapuetic services which have developed a better level of understanding of this injury and it's sequelae and we can avoid the issues of overuse syndrome and compensatory movements for the majority of them.
with best wishes
Karen

Karen

I did not take offense because I know you would never intend to denigrate anyone's pain and I did not think that was the intent of your post... and I hope my post did not offend you in any way.

I have had contact with so many other adult/obpi over the past few years and many are concerned about posting pain issues lest they upset parents... but it is necessary to make it know that we obpi children/teens often tough it out and as Michelle said and learn to overcome the pain...

When we begin to mature doctors often dismiss our pain as "aging - maturing" But that is not so it is all related to obpi/bpi long term issues. When I had my hands x-rayed they discovered I have severe osteo arthritis in all my fingers(except pinkie ring finger on bpi hand) yet I don't have it in my wrist, shoulders, feet... all the other area that would be normally affected by it... it is secondary to obpi and miss use not aging as was first told to me... of course I don't think I am old... and my health is good its just my arm, neck and hands that are aging...LOL... doctors must learn to check out those of us "mature" obpi and realize that the pains we are talking about are not part of the "normal natural aging process" We are experiencing a process created by secondary injury and creating pain long before we are into the natural aging process. I think sometimes it may be easier for them to blame it on aging as opposed to the real root cause obpi.

When I was in my early thirties and I had so many back problems and my unaffected hand began to show signs of osteoarthritis...one doctor actually told me I was getting older.... LOL... of course than I believed that 35 was old... LOL...he should see me now... LOL

Kath

This is a great question, but I'm not surprised too that the replies are so varied. In Nicole's case, I think Michelle's description fits the best. I've known for a while now about pains in Nicole's arm, particularly around the elbow area, but she just recently told me about shoulder pain. We discussed it and I asked some ?s to try to understand it all better. BTW, Nicole is 4 y.o. She showed me the exact spot where it hurts on the back of her shoulder. Based on what she told me, it has hurt her since she was 2 y.o. To me that likely indicates that it has always hurt, but of course, she doesn't recall a whole lot from life prior to 2 y.o. She also told me that it hurts all the time, but that it hurts most at night. I think that at this point, this pain is all that Nicole knows so she just learns how to deal with it. It stands to reason that it will likely get worse too as Nicole gets older. Plus, she will prob. also not have as high of a tolerance for pain. Sadly, I think that many of our young ones may be in pain most, if not all, of the time, but just find their own ways to control it (note: see anger management post LOL), and only know this pain. Of course, while that's "all she knows," I know that she knows that it shouldn't hurt like that b/c she doesn't get those pains on the R side, just the L.

-Tina, Mom to Nicole (4 y.o.)

Like Nicole katie too verbalizes (and has for awhile now) that her arm hurts. We have tried confusing her and asking where at on the other arm and she will emphatically let you know it is her right arm and exactly where it hurts the most. I know that she has had pain from day one (she had a fractured humerus on the non bpi arm) and from her behavior it was more of the bpi arm than the fracture as it has never let up. You will hear many of the families here talk about their babies were "fussy" alot or just "needy" compared to their other children (not all however) and that was katie from birth. She doesn't like to be touched anywhere on her right side--back, neck, shoulder, arm..even as an infant she would shriek when touched. So i have no doubt that she had pain. In fact when she had her first emg after primary the dr kept saying she was not crying because she felt it because she did not believe the surgery worked. After the emg she apologised--and said katie had felt every stick to some degree! Never again unless it is absolutely necessary. She does get some relief with "tapping" the muscle when those "lightening" strikes hit.

This is a great thread. I have a question relating to the affected arm and pain/infection.

Recently, while vacationing, our daughter (LOBPI) was bitten by a mosquito, just below her shoulder, on her bpi arm. I've NEVER seen a bite take over a body the way it did hers. It encompassed nearly the entire shoulder area. It was hot to the touch, very painful and extremely red, raised/swollen, and itchy. We tried the usual hydrogen peroxide and Neosporin, but it took a few doses of oral Benadryl to calm the forces that took over her arm. We were a few hours from taking her to the ER.

Has anyone experienced this before and do you think it's due to her injured arm being more sensitive to injury/foreign matter that causes infection? I'm thinking about the comment regarding the cat bite to Hazel's arm. YIKES! Cathy

Ah, just read Tina's post regarding sunscreen and mosquito bites, but it does bring a scare to you to see such an inflammation to the arm. Anyone else experience this? Cathy

it always happens when I get a bite on the bpi arm cathy except I can't feel it, and I can't feel the swelling/redness/itching either, which means I don't scratch it so it doesn't get infected.
Hazel's cat bite was very severe, the cat had basically been chewing on her hand all night and she didn't feel it because of the bpi, plus cats tend not to floss so have nasties in their teeth causing infections. Mozzie bites aren't usually a problem if they aren't scratched (unless you are allergic to them). I do think the bpi arm reacts worse to the bites because of reduced circulation maybe......??? Mine look absolutely awful but they do heal and to date I've had no infections in the bpi arm. I also don't let my cats sleep in bed with me...

I tryed to post to this yester day but my computer kicked me off.

My son from the time he could talk called his serevrely injured arm his grumpy arm.

Now the pain is much more severe, with shooting pains, and burning, worse at night and during growth periods,

the constant dull ache or burn he says he has always just tryed to ignore. But these shooting, muscle contracting pulls his thumb, and last two fingers in, while straightening in this arthretic kind of contortion his first two fingers, we have to work with warm water and massage until it eases, and he screams the entire time, as a baby he screamed through every ROM session.My husband could never do it it upset him too much.

I worry about the future with this kind of pain at eleven.

Katie reacts to bug bites and even little scratches the same way Cathy! But only on her BPI arm. We have seen her keep a bruise on that arm for up to five months whereas other areas are just like the norm--disappear in about a week to ten days. As soon as we see a little scratch we try to treat it with Neopsorin now because we know it will take a while to heal and just get bigger before going away.