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 Post subject: Re: Rare diseases support
PostPosted: Thu Apr 18, 2013 10:59 pm 
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Naked Under Apron
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Joined: Thu Oct 21, 2010 1:03 pm
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Location: Central PA
LittleChicken wrote:
Larisa wrote:
Ehlers Danlos Syndrome. Symptoms haven't been too bad lately, but I'm kind of expecting a flare-up when the new semester starts.

Me too! Having a rough time at the moment due to related conditions (do you also have Chiari/Syringomyelia/Cervical Instability).


No. I've got mitral valve prolapse, but that seems to be the only non-joint thing.


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 Post subject: Re: Rare diseases support
PostPosted: Mon Mar 23, 2015 11:42 am 
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Vegan Vegan Vegan Vegan Vegan
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Location: St. Louis
I am resurrecting this thread because I just got diagnosed with Mixed Connective Tissue Disease (with high likelihood of developing in to lupus) and Joint Hypermobility Syndrome ~ I'm on a bunch of new meds for the first time in my entire life. Like, I literally have only taken vitamins for YEARS and now I have to take 3 pills a day that make me nauseous and dizzy? gross.
All of this is very new and kinda scary to me. How is everyone doing?

mostly I'm disappointed because my rheumy told me I couldn't do yoga anymore since my joints were all too loose.

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 Post subject: Re: Rare diseases support
PostPosted: Sat Mar 28, 2015 8:09 pm 
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Naked Under Apron
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Location: Central PA
If the meds are making you nauseous and dizzy, talk to your doctor. Also, I've got a lot of experience with joint hypermobility -- feel free to talk to me if you've got questions about that part of it.


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