United Brachial Plexus Network, Inc.

Evan raised a good point a few posts ago and I think it deserves some fuller discussion. So let's bring the issue of pain with OBPI front and center.

From what I can gather so far, pain is very much individualistic with this injury. We can only share our own experience here but that is exactly what this kind of forum is for. There are different thresholds of pain that people feel and there is no way to measure pain. Don't you hate it when they ask you to rate your pain on a scale of 1-10 and you haven't the slightest idea of how to do that!

So, I'll start us off. Fortunately, I have had very little direct pain with my obpi. Growing up, most of the pain was psychological, as the frustration with not being able to do things was the hardest to cope with. Pain that I have felt has related to secondary things, like compensation, overuse, arthritis (later in life), and contractions. Numbness in the fingers is not exactly painful but has still been experienced. I've never had to take more than ibuprofin for pain.

Nancy

Yes, Nancy, I agree with you, while pain is very individual - my son as a newborn experienced pain. I could tell by his cry. I can still remember the sound. Even during a diaper change, he would scream, and scream.

As his mother, I knew it. When he was old enough to say so, he would tell me how much his arm hurted. Oh yes, and the headaaches he experiences, like the worst migraines, along with vomiting.

Even though the doctors told me they believed the injury to be painless, they were very wrong in the case of my son.

When it comes to my children, I always trust my own instincts and judgement. Doctors aren't always right, if they were.......well you know!

Gwen

My pain started in my teen years. I was put on flexerils and tylenol 3's.I don't know how I made it with all those drugs.


my pain started in the shoulder and ran down the upper side of my arm. I am 40 and still have pain today. When i was a child I only remember it hurting when someone picked me up under my arm or pulled on it. I have had my arm in so much pain it would lock up on me and I would wear a sling until I got into therapy.It kind of feels like a stabbing pain in the shoulder and pins and needles in the arm.

I also have a son injured at birth, and like Gwen we noticed that as an infant he was in a great deal of pain at times, particularly when lying down. Also like Gwen we were incorrectly told by doctors that he would not feel any pain. That was unfortunate, as it led us to overlook the real cause of his pain for far too long, in my opinion. Today he does not seem to experience any pain, although he has an extremely high pain threshold (perhaps related to his early life experiences).

Bridget

I am 48 OBPI. I can only remember severe aching in the bp arm as a child. I still get that at times. It starts in my neck and goes down through my arm. Now, i'm more like Nancy,though. Overuse has caused carpal tunnel in both arms, arthritis, pronator syndrome, etc. I believe that you can see pain on the face of a child. The Dr. doesn't always know. A mother can feel her child's pain. You're right,in that the worse pain is trying your best to do something and not being able to. I've suggested that certain people in my life tie their arm down for a couple of hours, but noone wants to do it. Why?????????? Pat

Nancy

This is a thought provoking question.

I drove my family crazy and they love to tell me how I was such a pain I never slept and cried all night and especially when the brace was going back on.... at least the first year.... My older brothers told me that when they could they would sneak in and loosen my hand in the brace to stop me from crying. They thought my parents were so mean. So I have to wonder about the pain because if you tear your brachial plexus it has to be painful at any age... babies do feel pain.

As far a remembering I was in pain... I knew nothing different... I did tell my Mom my back under the scapular always hurt. If ANYONE tapped me on the back... I would get shocks down my arm and my arm felt awful... but you had to hit that spot near where the scapular winged.

I also had spasms that felt awful... I can't describe it- out of no where it would appear I would move and the pain was so intense I would loose my breath and composure if it happened. I lived in fear that this would happen in public as a kid... as a young working woman and especially as a young Mom carrying around the babies. This happens rarely now, but sometimes it still comes out of no where and I still loose my breath and jump around until someone rubs my arm and it goes away.

About ten years ago I went to a chiropractor... I felt safe because he is my friends husband and has two family members with Erb's... He did three adjustments and the pain in my back that I had forever ---- WAS GONE!!!! I did the happy dance for weeks. I also gained the ability to keep my hand palm up... (Only when in front of me next to my waist) I was never able to see my palm unless I held my right hand with the left... and once I let go my hand snapped like a spring back into a pronated position...

My back was always out and painful and it started in my teens and early twenties. After I had the children I was always in pain on the right side from lifting and carrying... The doctors never mentioned that it might be due to Erb's and carrying all the kids (my first two are 14 months apart) No one ever told me that all of the back and neck problems were related to Erb's until now! They just offered me drugs to kill the pain and never mentioned that perhaps I needed to learn to use my body in other ways to protect it from being hurt.

I take no medication and never did ... when the Drs. gave me flexural (sp) I went to la la land.. so I never took them I would rather have the pain in the back. then take heavy medications... I don't do well with any type of medication... even the Asthma ones.

Last year both rotator cuffs were in real trouble I was in such pain. I was given Vioxx ... that was the first time I knew what it felt like not to have any pain I was so amazed at what it felt like to be pain free... I only took them for two days and swelled up so I could not take them. Celebrex did nothing for me... I only take aspirin occasionally... Motrin does nothing for me... I have Osteoarthritis in both hands and they are both very badly deformed now... and that is secondary to Erb's Palsy.

The scale of 1-10 does not work for me... I don't know what they want...LOL.... I knew when both rotator cuffs were so bad I told the PT I had a 5 or 6 and the PT laughed... he said he thought that I had a high pain tollerance and just could not judge.
I realize now that both rotator cuffs are better... It was like a 15/20... LOL... on each side and that is why they wanted me to take some pain killers... to stubborn to do that...

I have more problems with the "un-affected arm" burning, stinging, numb and tingling... and again I think it is secondary to obpi and from long term abuse and overuse... I thought I could do anything one handed and tried to prove it!

The numbness in the right hand and the swelling in my arm annoy me. My hands are painful. My arm is OK as long as I don't bump that elbow into a wall or try to make a move that causes the spasms I am fine...

The left arm is very painful now. And my right hand does not really work I can use the pincer fingers but not the other three fingers except to type...

I don't remember being in pain all my life but pain was a part of this injury for me. I would say it hurt, the doctor told my family "no pain with Erb's" so I stopped telling them.
I thought it was normal and it was my normal... It was pain but pain denied did not exist therefore I never talked about it.

Like fingerprints I think each one has a different experience with pain and Erb's. It may depend on how the nerves healed and what degree of damage and how much feeling our arms have.

I wonder if the pain and the problems relating to Erb's was different for boys then it was for girls? Because of the physical and the emotional difference between boys and girls in general.

Just my thoughts and experience
Kath

Pat
Did you ever try to explain this to anyone? and watch their eyes glaze over before they tell you how well you have done with it and how much worse off others are...
I don't even try... My friends are so interested in finding out more about this and my siblings ... well they don't want to talk about it...they hate that I ask so many questions now!!! they think I did just fine... and no one notices it anyway...

They don't get its about function not how we look.

The nice thing about this board is that yoou can talk about it. Noone thinks you are complaining or trying to get out of anything. And there is no "you can do it" and then busting your butt trying to prove that you can. I do know that there are others a lot worse off than I am. I also know that alot of people have had two arms that work all of their lives and have no clue how helpless you feel to be 48 and know that your "good" arm will never be good again-that the fingerdeformities, numbness, pain, intolerance to change in temoerature,neck spasms, and all of the other stuff is here to stay. It isn't goingto get any better. I am on disability, but it sure isn't by choice. The thing is, we ,at least ,I, look like I have normal arms (except for the crooked fingers) Noone understands why I don't want to lift furnture,carry heavy bags, scrub walls-that kind of thing. I always feel like I'm being called lazy behind my back. I raised my two kids alone fron the time they were 3 and 5,worked my way up to a pretty good job .So add depression and paranoia to the Erb's .
On the up sie up until the last few years, the arm didn't get in my way alot. I lived a full lifr, still do for that matter. Sometimes, I just wanted to talk about it to someone. Not to complain-just to talk about it and noone ever wanted to listen. I got the story you mentioned-others are worse off. It never got out. The pain, feeling slightly inferior, frustration- I still won't dance because I look funny with a dangly arm--anyway that kind of stuff. So I really am grateful to be able to vent my frustrations on this board and whine a little bit. It feels good. So thanks for the board. Kath and whoever else made this possible. Pat

Pat
Boy you hit the nail right on the head!

I think that family was so use to cheering us on that they forget to let us just have our feelings. This is the place we can let them out...

Our worst fears seem to be coming true ... forced retirement ... loosing the "healthy" arm...

I loved what you said about lazy and not lifting things ... that is the hardest part for me...
Kath

I think I'm busier now than when I was working. Everyone seems to think I have all this time on my hands and can do all of this extra stuff for them. I need to learn to say no and to quit worrying about hurting someone's feelings. I keep trying to think of something I could train to do, I'm not used to being home all the time and it's driving me crazy. I watch my 2 year old granddaughter one day a week and I don't want to give that up but there has to be something to keep my brain stimulated. I thought of school, but I can't write legibly and can only type for a few minutes at a time ( can't seem to build strength in either arm) I liked my travel job, but I can't carry th suitcases anymore. Too many hand problems, back problems etc. Of course I could do a hand commercial, I do have such lovely knobs on my fingers and the fingers twist into such interesting positions. Gee Kath, we could do that together. There has to be something. Let's see, my fingers and hands are shot, the back is gone, I just went on insulin, my eyesight isn't real great. Any ideas???? One of these days I'm going to get in my car and come for a visit. Pat