Questions # 1 Topic is Pain

[Kath]

Moving this up to the top of this form for the girls and their questions on pain.

This might help some.

Kath (robpi/adult)

[Kath]

moving this up for Philly King information.

[Kath]

Moved to the top for newbies

Kath robpi/adult

[crw]

How many have always had pain? I remember being in pain for as long as my memories take me back

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? I always complained of pain in my shoulder - however, I was shunned by my family for being a "cripple" and often pushed aside.

When you complained as a child were you told this injury is not painful? I would say I was just mainly ignored.

Did any of you have the shock type pains when you were small? I would have to know more about what you mean by shock type pains to really answer that one. Sharp stabbing pains? yes.

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

Does the weather bother you? Yes, my elbow tends to hurt more as it grows colder, my shoulder tends to ache more as well

Do you have to take medication for pain and have you always had to take something? When I was little I was on medication for various things, now at my age I hate going to the doctor for anything and live mostly off of Excedrine and Advil

At what age do you think pain begins to be more noticeable? It has grown as I have grown. It became pretty bad when I was 17 but was always a part of my life.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? I just assumed it.

Did any of you realize that compensation and bpi may have caused other health problems? yes

How many thought it was only an arm and it did not affect the rest of your body. I have known for a long time it isnt just my arm. The nerves were affected, etc.

Did you think that the unaffected arm was so physically strong nothing could change it ? No. My left arm began to hurt quite a while ago as well - I figured it was because I was over using it since I cannot use my right arm for much.

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? I don't really have that kind of money.

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? I'm probably a lot worse off now than anyone who had seen a doctor as a child. Since the injury was almost 100% ignored, I would assume the pain is that much greater - but can't know for sure. I do know that because there was never any attempt to gain surgery, etc. that I am probably stuck this way permanently.

Did you ever realize that no one spoke about your arm during physical exams? I only had the 1 per year exam - they never spoke about my arm.

Did you ever receive any instructions on how to care for yourself and prevent injury? Never.

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck? My hand/wrist area and below the elbow falls asleep VERY easily.

Is your arm colder when you sleep? I've never focused on that - I would assume my arm falls asleep when I'm sleeping since I have long since tucked it under my body...a bit hard to describe but its the only way I can sleep.

Do you wake up because your arm is cold? Not that I'm aware of.

Do you often find your arm hand is freezing even when using it? My hand itself is generally very cold all the time.

[karategirl1kyu]

> This is the first in a series of questions.
> I am trying to gather some information on our
> adult/obpi community. There are no long range studies
> on OBPI and the long term effects that compensation
> creates for us. We must begin with ourselves.
>
> These questions are on the subject of PAIN as it
> relates to the obpi both as children and now as
> adults
>
> How many have always had pain?
> i have for the past while
> Did you ever tell your parents/family you were in
> pain or did you just accept it as your normal?
> i usually just say ow and keep doing whatever
> When you complained as a child were you told this
> injury is not painful?
> i didnt complain about pain as a child
> Did any of you have the shock type pains when you
> were small?
> not so much then as i do now
> Did it occur during growth periods or just out of no
> where?
> it comes out of nowhere
> Does the weather bother you?
> all the time- mostly my knees, but my arm and back too
> Do you have to take medication for pain and have you
> always had to take something?
> i dont, but i wish there was somethingto get rid of the pain
> At what age do you think pain begins to be more
> noticeable?
> about 18 is when i started noticing
> How many of you were unaware that arm, neck and back
> problems were related to your arm and compensation?
> my back is always hurting... didnt know it had to do with my arm though
> Did any of you realize that compensation and bpi may
> have caused other health problems?
> nope
> How many thought it was only an arm and it did not
> affect the rest of your body.
> i didnt think it could affect anything else
> Did you think that the unaffected arm was so
> physically strong nothing could change it ?
> i did
> 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?
> not even close i was dismissed at 15 and havent been back
> 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?
> my back is always in knots and i get pain twitches all the time
> Did you ever realize that no one spoke about your arm
> during physical exams?
> nobody seemed to care
> Did you ever receive any instructions on how to care
> for yourself and prevent injury?
> nope
> Do you have poor circulation,lack feeling on some
> parts of your arm,face, hand, ear and neck
> lack of feeling....
> Is your arm colder when you sleep?
> Do you wake up because your arm is cold?
> Do you often find your arm hand is freezing even when
> using it?
> i wake up sometimes b/c im on topof my arm and cant feel it and its really cold...
>
>
> Thanks for answering many of these question many come
> from the past three years of posts and e-mails.
>
> Kath

[Mare]

These questions are on the subject of PAIN as it relates to the obpi both as children and now as adults
14 yrs old

How many have always had pain? /no

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

When you complained as a child were you told this injury is not painful? / no

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? /yes growth, fever,

Does the weather bother you?/ no

Do you have to take medication for pain and have you always had to take something?/never

At what age do you think pain begins to be more noticeable?/ around age 7

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?/ I know now that I'm older

Did any of you realize that compensation and bpi may have caused other health problems?/ Sure

How many thought it was only an arm and it did not affect the rest of your body./ no other problems as of yet

Did you think that the unaffected arm was so physically strong nothing could change it ?/ no

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?/ Ot/Pt almost my whole life and see bpi doctors at clinics

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?/ my regular doctor never says anything about it not even after my mod quad its weird.

Did you ever receive any instructions on how to care for yourself and prevent injury?/ yes from mom and OT

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

Is your arm colder when you sleep?/ yes
Do you wake up because your arm is cold?/ no
Do you often find your arm hand is freezing even when using it?/ nonfunctional



Thanks for answering many of these question many come from the past three years of posts and e-mails.

Kath