Questions # 1 Topic is Pain

[Karen Pape, MD]

Thank you Kath for bring this forward. I had posted the following on the general message board and would have missed this thread. It is really disturbing to read how many people have had to deal with so much pain with so little support over the years. 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 to 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!

[Mel4fitness]

Hello, my name is Melanie and I'm 33 yrs.

How many have always had pain? Not until the last 5 years

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? n/a

When you complained as a child were you told this injury is not painful? n/a

Did any of you have the shock type pains when you were small? n/a

Did it occur during growth periods or just out of no where? n/a

Does the weather bother you? Yes

Do you have to take medication for pain and have you always had to take something? yes, vicodan b/c the "over-the-counter" crap doesn't work

At what age do you think pain begins to be more noticeable? age 28

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? I figured that was why

Did any of you realize that compensation and bpi may have caused other health problems? no

How many thought it was only an arm and it did not affect the rest of your body. I did until recently, due to wear and tear

Did you think that the unaffected arm was so physically strong nothing could change it ? Yes

How many have had really good follow up care from physicians ... sending you to PT and/or checking to see your arms are moving keeping track of your ROM?

If your answer to good follow up care is no. Yes, doctors don't seem to know too much about bpi, at least the ones I've spoken with.

Can you state how the lack of interest in your arm impacted your physical health? I actually am a work-out nut, exercising has helped me.

Did you ever realize that no one spoke about your arm during physical exams? no

Did you ever receive any instructions on how to care for yourself and prevent injury? no, I wish I had, I might be in better shape (I have a herniated C5 and osteoarthritis in my left shoulder from overuse).

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck my right hand and forearm

Is your arm colder when you sleep? no
Do you wake up because your arm is cold? no
Do you often find your arm hand is freezing even when using it? yes, to the pount it gets achy and sometimes my right arm oversweats as well

[Kath]

Mel
Thanks for answering these questions. I think it is important for us to share our experience and learn from each other.

There are no long range studies on the total body impact of the initial injury. It takes years before some of us made the connection. Comparing notes on experience helps us to sort out the mystery.

Maybe one day a team of doctor will study those of us who are older and possibly help prevent secondary injuries to the children.

Of course it would help if they also made a treatment plan for those of us who have secondary injuries due to a life time of compensation. I would hate to see the next generation of children run the risks of overuse and back problem without doctors being aware that it is connected to bpi. Most physicians have had no experience with obpi adults and therefore only our symptoms and no advice is given on how to protect ourselves from more injury.

Kath

[Kath]

Moving this up for Russell to read. I hope this helps

[Kath]

moving this up...

[Kath]

Priscilla
I hope it helped to answer some of your questions.
Kath

[admin]

How many have always had pain?
I've always had it.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
I told my Mum from a very early age about my pain

When you complained as a child were you told this injury is not painful?
Yes. My doctors till this day refuse to acknowledge that I have pain.

Did any of you have the shock type pains when you were small?
Yes

Did it occur during growth periods or just out of no where?
Kind of out of no where.

Does the weather bother you?
yes. Cold weather makes my pain worse.

Do you have to take medication for pain and have you always had to take something?
I take pain killers now. I've tried lots of stuff but nothing seems to work. Pain killers help a little

At what age do you think pain begins to be more noticeable?
In my early teens.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?

Did any of you realize that compensation and bpi may have caused other health problems?
No. I'm still not fully aware of the consequences arising from my Erbs palsy.

How many thought it was only an arm and it did not affect the rest of your body.
I've always found it really hard to accept my problem. I never thought that the arm didn't affect the rest of my body. I have problems with my entire right side

Did you think that the unaffected arm was so physically strong nothing could change it ?
Not really. But I do find my left hand is extremely strong.

How many have had really good follow up care from physicians ... sending you to PT and/or checking to see your arms are moving keeping track of your ROM?
Yes
If your answer to good follow up care is no

Can you state how the lack of interest in your arm impacted your physical health?


Did you ever realize that no one spoke about your arm during physical exams?

Did you ever receive any instructions on how to care for yourself and prevent injury?

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck
Yes

Is your arm colder when you sleep?
Yes
Do you wake up because your arm is cold?
Yes
Do you often find your arm hand is freezing even when using it?
Yes

[Kath]

Hi Sarah
Thanks for answering all the questions. It is amazing how many of us have experience the same pain issues yet many think there is no pain with obpi.

Sorry I did not respond sooner some how I missed you post. Welcome to the boards if you have any questions please feel free to post them or e-mail me.
Kath

[Kath]

moving up for CyndiAnn

[Kath]

moving this up for Tracy 1972