United Brachial Plexus Network, Inc.

I am a sixteen year old girl with an Erbs Palsy in my right arm and have been going for doctors appointments all my life. I'm getting tired of it all now, no one seems to listen to what I'm saying. Most doctors and lawyers seem to believe that it is impossible for me to have pain and my mother and I are both tired from a sixteen year long battle. It seems to just keep going. It's hard enough with my school work but I think I may be getting a little depressed. It is a huge strain on my mother also, no one really listens to her.

I'm wondering if anyone knows anything I can do to ease the stress of it all, maybe relaxation techniques etc and if anyone had any advice on how to ease the physical pain that I get in the arm. I have tried heated pads, tens machines etc, but none of that seems to make much difference. Any advice would by greatly appreciated.

Sarah, I'm sorry you are in pain, do you know what type of pain - do you think it is nerve pain or more of muscle pain- or both? My son is thirteen and a couple of things help with his pain (his pain is more muscular skeletal pain ) doing stretches and massage techniques everyday that his physiotherapists and massage tharapistshave trained me to do for him (so we don't have to run off to appointments everyday)we heat the areas up with these large water bags of warm water first. Also building muscle strength using TES and other e-stim and exercise. We also have a flexible brace he wears to help support his arms and shoulders- it was made by the ARK pediatric braces.It is exhausting and sometimes my son gets depressed about having to deal with all this as well -I hope you find somethings to help bring relief - if you want to ask more details about any of the stuff we do go ahead or email .

Hi Sarah, I don`t know if you read my problems I have been having with my daughter.She is 12 yrs old and she has been depressed and she has found a wrong friend to boot. But if you want to email me please feel free to do so. We live in north eastern PA.
And I do understand about no one will listen
kim

Sarah,
Have you ever tried acupuncture or Reiki energy. Both are excellent for pain and relaxation. I have recently added meditation and yoga into my daily exercise.

Cindy

Sarah, I suggest too, to print/copy the medical reports/papers on the Medical Resources link and there is a very good one on Neuropathic Pain Issues for Adults with AN BPI injury;I did print out and took it too my doctor also the web address for UBPN. This really helped him want to learn all he can to help me.
Carolyn J
LOBPI

Sarah,

I'm sorry to hear that you get "the pain" too.

I try and immerse myself in something, a film, a video game, taking my dogs for a walk. That sometimes helps. Really what I'm saying is just try and get involved in something you can enjoy when you feel it coming on.

A tip would be to buy something like a puzzle, and only ever do it when you feel a bit of pain coming on. That way, you mind is on other things.

I hope that this helps you.

Regards,
Dave

Sarah, It always helps me to talk when I start getting depressed, so feel free to email me at hope16_05@hotmail.com. Also are you in formal therapy, or have you ever seen a chiropractor, I notice the most pain in my shoulder when my back is not fully aligned. Hope this helps
Amy

I forgot to mention that I am 17 so we probably go through a lot of the same stuff.

hi im caroline mum to charlotte who is also 16,she has right erbs but weve not had any info on this injury untill recently,we sort of kept it quite and didnt tell anyone about it,however as charlotte is 16 id be very gratefull if you could e mail her or maybe chat on line to her as she doesnt know anyone in our area with erbs,im also just going through with legal action,only just started and yes its scarey dont know what to expect,maybe your mum could mail me aswel,id be so pleased,thankyou caroline from uk xx

Pain is a reality for every person who has had a peripheral nerve injury. It is important for all of us to realize that pain is one of the significant problems in the process of recovery and therapy. When the injury happens at birth, many children grow up thinking a certain amount of pain is normal. Often they do not realize that what they feel is abnormal until they are older. I first realized this important fact several years ago when I was involved with a research study of Threshold Electrical Stimulation (TES) in young children with clubfoot. In the older children…aged 8 – 12y, one significant finding was they reported that their pain had “gone”. The surprise to their doctor and their parents was that they had never reported pain in the past. That was just the way their foot felt.
Pain is treatable and no one should live his or her life with unmanaged pain. The first step is to understand what type(s) of pain you have. As the posts on this thread have pointed out, there is neurogenic pain related to the nerve injury and how it recovers. There is also musculoskeletal pain from secondary problems in the bones, joints, muscles and tendons. And there is another group of pain symptoms that I call circulatory…these relate to poor circulation, cold limbs, and stiff muscles. If you keep track of what hurts, when…with any factors that make it worse or better, then you are halfway to having less pain. The next step is to ask to see a pain specialist. Many cities have organized Pain Clinics. If not, try to see a Physical Medicine and Rehabilitation doctor. They are also called Physiatrists. They are usually very well equipped to sort out what is causing the pain and how to make it better. They also tend to use the full spectrum of techniques that are available…not just typical “doctor stuff”. At the TASC Network Model for Recovery workshops, I have asked a Physiatrist to be one of the experts at each session to address the issues of diagnosis and management of pain. The Focus on 12 –16 year program is August 13-14, 2005. The Focus on 16 years to Adult workshop is September 24-25,2005.
More information is posted at www.tasnetwork.net You do not need to wait for the workshops to start the process of improvement. Pain needs to be managed as a first priority for recovery!