Posted by ontario resident on 11/14/2006, 2:53 pm, in reply to "Petra's pain" I also have experienced an aching in the lungs where it doesn't seem worth making the effort to breathe (I am about 38 years old now). A few days ago, I was having a nasty pain that seemed to originate under my right shoulderblade (I'm sorry about being vague, I have difficulty remembering the exact details about pain after it is gone). The pain was there for the whole day and I finally got my husband to look at my back in the evening. He noticed that there was a discrepancy in the positioning of my shoulderblades of more that one of his fingerwidths. He pushed lightly somewhere below my armpit, and the pain disappeared immediately, and the shoulderblade was aligned again. The same sort of thing happened the next day, but we could not check to see if there was a similar discrepancy in position. If I have the breathing problem again when he is home, I want to get him to try that again in case something is physically pushing on the lungs. It may not have much effect if air pressure is the cause (something else that I have been suspicious of). I have seen discussions on the internet where it seems that subluxations and dislocations of ribs and shoulderblades are not uncommon for hypermobiles. That may or may not have anything to do with your daughter's pain. Another thing that I should probably mention is that I have found that things such as bras or other moderately tight clothing makes breathing difficult, not necessarily at first, but by the end of the day such things become unbearable. Oh, I have found that I have feet that become flat when I stand (another thing common for hypermobiles). I always knew that my ankles turn inward, but I never thought much about it. Now I have found that wearing arch supports in shoes around the house helps ward off back pain (the extra height of the shoes also helps since I am a bit too short for my kitchen). Most of the supports that I have tried are not right, I stacked a couple inside a pair of partial running shoes and that is pretty good. I may have to get some custom orthotics done. Also standing still aggravates things because everything seems to settle. Keeping moving helps. I got referred to a doctor at a sports medicine clinic. He isn't really experienced in hypermobility, but he says that some hypermobile people have had some success with working on core stability (he says my posture is terrible). He referred me to a book called "the Core Program" by Peggy W. Brill. I haven't had the patience for it yet, but I intend to give it a try. I have bought a "sit disc" which is like a flat exercise ball (the more expensive one from fitness depot $40 is less bouncy and tougher than the one I found at the grocery store). You are supposed to sit on it and balance to work on your core stability. I wish that I had known about them in high school and university, it would have at least reduced the pain in my tailbone and pelvis. It sounds like puberty, periods and pregnancy make ligaments even looser making things even worse for hypermobiles. If you think that any of this stuff is helpful, there is probably more that I could tell you, but this seems to be getting too long to read already... And I am afraid that my stupidity may outweigh my sense...I think that my shoulder may be so unstable now partly because i was stupid enough to try the arm skipping rope trick backwards when asked if i could do it.
I feel sorry for you and your girl. Pain makes life hard enough without having to deal with it not being evident to others that it is there. But knowing the cause of pain helps quite a bit in compensating for it.
--Previous Message--
: HI everyone Yes its been a while since
: I last wrote. I hope to spend more
: time coming back to being able to
: write to you guys because I'am
: starting Feel lost in how to help
: Petra with evry day callenges.
: mostly the hidden pain in joints and
: back. she has felt that by the and
: of the day she is so tired that she
: just has to go to bed. She has said
: thatit feels that if her lungs are
: tired and it is hard for her to
: breath, by the end of the day. You
: can tell that it is taking its toll
: on her. Sometimes the advil doesn't
: touch the pain. One of the reasons
: That I need you guys is because I
: wan't to support my daughter and not
: hinder her in any way. Sometimes
: Just seeing her in her bed drifting
: off to sleep all I can do is wish
: that tomorrow is a better day. Does
: any one suffer from delayed gastric
: emptying. Petra has to take losec
: for this every day.
:
: Thanks for
: your time Tanya
:
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