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Author Topic: 16 and have hypermobile EDS. Can anyone offer advice on dealing with it?  (Read 3396 times)

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Offline bluebirdmgc

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Hi! I'm a 16 year old girl who just found out about a month ago that I have hypermobile EDS (type III). I have trouble with hyperextending, subluxing and dislocating many joints in my body. I dislocate my shoulders about 10 times per day (the geneticst who diagnosed me said yes, I really was dislocating them all of the way) and either dislocate or sublux a hip at least once per day (in this case, since I can't do it at will, the geneticist couldn't say which it was). I hyperextend my knees often. I also hyperextend multiple finger joints while typing, pressing buttons, writing or playing my saxophone. I experience mild to moderate pain in my hips, knees, wrists and fingers, which I thought everyone had until I found out about EDS and started doing some research. I asked a physician when I was youger about my dislocating shoulders and she told me not to worry. Now that I know tha I shouldn't be doing this and that I can do something about the pain, I'm looking for help in managing my day-to-day life. I'm going to physical therapy for my shoulders and occasionally use a wrist brace on my right wrist, which helps me control the pain. At the moment, I'm trying to decide what I should be doing to protect my joints for the future, having heard about the risk of arthritis and joint damage due to hyperextension, dislocation and subluxion. Can anyone tell me what I can do to protect my joints? I just looked to see just how much I can hyperextend them and I can noticeably hyperextend 15 joints (i.e. at least 20 degreees beyond 180, mostly closer to 50 degreees beyond 180), including all fingers. Should I wear finger splints to protect them from damage? What about my other joints? The geneticist told me to take 500mg of vitamin C per day, which I do. Since I'm still young I want to make sure I protect my joints for the future. I've been looking at other postings and have seen how many other people there are out there with EDS. Thanks a lot for all of the info you have been posting. I guess my real question now is how I know if I ought to be splinting or bracing my joints or not. I'm not sure how "bad" a joint has to be in order for bracing to be useful/necessary and whether there's anything else that I can do to keep my joints functioning as smoothly as possible in the years to come. I would appreciate any advice you could give me.
« Last Edit: February 01, 2005, 04:02:48 AM by bluebirdmgc »
Hypermobile (type III) EDS - diagnosed December 2004.

Offline bluebirdmgc

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An update
« Reply #1 on: February 01, 2005, 04:08:37 AM »
It's me again. I had a relatively rough day today, joint-wise. My fingers, knees, right hip and right wrist hurt pretty much all day, even though I didn't play my saxophone and took ibuprofen. The fingers were a real pain - they were stiff and achey all day, especially after writing. I realized that I hyperextend a finger when I write and I tried not to, but it still hurt. I keep hearing about finer splints - could they help me with this? I'll be going to the PT on wednesday, but if anyone can give me information on what I could do and what I should ask him about, specifically, I would really appreciate it. Sorry to be bugging everyone about this. I know that many of you have it worse than I do. It's just that, now that I know that I can, I want to do everything I can to stop the pain. Please help!
Hypermobile (type III) EDS - diagnosed December 2004.

shadehawk

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Re: 16 and have hypermobile EDS. Can anyone offer advice on dealing with it?
« Reply #2 on: February 01, 2005, 05:17:32 PM »
Here is something that I ran across.  People have been having good results with these.  Maybe these would help your fingers.

http://www.uggen.net/srs.htm   

Good luck  ;)
« Last Edit: February 01, 2005, 05:21:14 PM by Shadehawk »

Offline tami

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Re: 16 and have hypermobile EDS. Can anyone offer advice on dealing with it?
« Reply #3 on: February 21, 2005, 02:02:48 AM »
I am new to this site.  I am very sympathetic to your plight Bluebirdr.  My 16 yr. old daughter has been evaluated for many connective tissue/autoimmune disorders. We went to Hopkins for OI testing, biopsy for celiac disease and more. Negative as of yet.  So I am curious how you were tested for EDS.  My daughter was diagnosed with MVP and arrythmia 4 days ago.  She has Kyphosis too.  What advise would you give us.  I think she has EDS but there appears to be many types of and tests for the subtypes.  Thanks, honey, for sharing your story.

Offline bluebirdmgc

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Diagnosing EDS
« Reply #4 on: February 22, 2005, 12:21:53 AM »
Well, tami, I'm not quite an EDS expert yet, but I'll do what I can to help you and your daughter. I underwent knee surgery following a few bike accidents and the surgeon noted my "stretchiness" and referred me to a genetecist, who conducted tests of my flexibility and asked me some questions. Some types of EDS can be diagnosed through skin biopsies, some clinically (through flexibility and other signs). My suggestion would be that you make an appointment with a genetecist and go with your daughter. Bring her father as well, if possible - as EDS is genetic, testing the parents as well can help determine which type a patient has or if the problem might be a similar condition (such as Marfans or Hypermobility syndrome). Interestingly enough, mitral valve prolapse occurs very often in people with type III EDS (also known as hypermobile EDS and the form that I was blessed with).

I sincerely hope that my little comments can help you and if you have any other questions, please ask. The best of luck in your medical quests and I hope your daughter doesn't have too much trouble with her rebelling body.
Hypermobile (type III) EDS - diagnosed December 2004.















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