Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Ehlers-Danlos anybody? (Hypermobility)

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Sushi, Jul 28, 2009.

  1. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Professor Graham didn't believe in M.E so I didn't push the subject - he said all my symptoms of fatigue and pain were down to the EDS. What's prolotherapy and Hyawhatsy? Not heard of them Sara x
     
    warriorseekspeace likes this.
  2. sleepy237

    sleepy237 Senior Member

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    Hell
    I have hypermobility syndrome also but EDS was never mentioned by rheumatology in diagnosing in 2006. I am aware that type 3 EDS may well be HMS benign type but its never been mentioned, wish I could see P. Graham but too far to travel for me im other end of country. @ Sarah Idk what Hyaroulonic Acid is but will sure look into it thank you.
     
  3. Esther12

    Esther12 Senior Member

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    Uno. I see. Ta.

    @ sleepy: There was a clinic in Leeds, but I think it's now gone. One was planned for manchester... not sure what happened.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    I had prolotherapy in the ligaments around my knees and it helped moderately but hurt like hell! They inject sugar and lidocaine (as I remember). The sugar is just an irritant that makes the ligament respond by growing stronger. The Hyaroulonic Acid is a supplement. That one didn't help me. What helps me the most is pilates.

    Sushi
     
    warriorseekspeace likes this.
  5. *GG*

    *GG* Senior Member

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    Concord, NH
    I am looking to have prolotherapy done, amazing how many in the medical field don't know about it. I mentioned it to a few people that were giving me PT.

    I had a labral tear that was fixed surgically but I hurt myself while healing(fog and fatigue), so I never felt any better, perhaps worse after the surgery. I also did not know that I had Fibro at the time, not sure if that really matters, but I am under the impression that it does?!

    Sushi, you make this sound painful! Or perhaps it is because of where you had it, in your knee? I had a bunch 5 or 6 trigger point injections done last Wednsday, seems to have helped my back pain, but not the hip! Want to get back on my bike a little more this year, so hope to get the hip in better shape, still need to get a HRM so I don't over do it also! Cannot afford PEM and missing work!!

    GG
     
  6. TinyT

    TinyT Senior Member

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    Australia
    My Brighton score is at least 5. I also have abnormal skin signs, arthralgia, history of soft tissue rheumatism, & myopia. Used to be a dancer and was/is very hypermobile!

    Any tips on getting this diagnosed?

    Ah, I also have moderate-severe POTS
     

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