Ehlers-Danlos Syndrome, Scoliosis, and Hypermobility?
DrMAvDPhD
Posts: 2,097 Member
Over the last few months, I have drawn a link between my hypermobility and scoliosis. I have been (kind of) diagnosed with Type 3 Ehlers-Danlos Syndrom. I say kind of, because with Type 3 there is no genetic test.
But I have found that I do in fact have many of the symptoms, including:
Scoliosis
Joint hypermobility
Joint pain, cracking, popping
Flat feet
Clumsiness (associated with weakened joints)
Thin, velvety skin
Dental complications
IBS
etc
Basically, many ailments that have plagued me for my whole life that I thought were totally unrelated are all explained by this one diagnosis. There are also other more serious symptoms that can be associated with EDS and I ended up getting some extensive tests done on my heart and vasculature system (all was fine!). But I'm guessing that I'm not the only person who slipped through the cracks growing up. So I urge you all to read this pamphlet
http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf
and see if EDS is something you should discuss with your doctor!
PS I am extremely interested in having more scoliosis/hypermobile friends who understand our unique challenges for fitness, so feel free to add me!
-Mallory
But I have found that I do in fact have many of the symptoms, including:
Scoliosis
Joint hypermobility
Joint pain, cracking, popping
Flat feet
Clumsiness (associated with weakened joints)
Thin, velvety skin
Dental complications
IBS
etc
Basically, many ailments that have plagued me for my whole life that I thought were totally unrelated are all explained by this one diagnosis. There are also other more serious symptoms that can be associated with EDS and I ended up getting some extensive tests done on my heart and vasculature system (all was fine!). But I'm guessing that I'm not the only person who slipped through the cracks growing up. So I urge you all to read this pamphlet
http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf
and see if EDS is something you should discuss with your doctor!
PS I am extremely interested in having more scoliosis/hypermobile friends who understand our unique challenges for fitness, so feel free to add me!
-Mallory
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Replies
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Well no one else seems to have my special case but I'm still going to whine a little more. Dislocated my shoulder again on Saturday and might've torn something this time around. The doctors said to give it another 2 weeks or so and if it still hurts I'll be going in for an MRI. I'm getting a shoulder brace to prevent it from occurring again during sports!1
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Wow, my husband doesn't have scoliosis but has a lot of the other symptoms. I"ll have to look into that - thanks for posting this!
And I'm sorry to hear about your shoulder dislocating - my husband has the same problem.
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Just sneaking in (I don't have scoliosis, apologies) but I did a general search for hypermobility and this thread came up! I've been diagnosed as hypermobile too, but am being 'tested' currently for EDS type 3 as I have many of the symptoms. I have my Rheumatologists appointment at the end of May where the doc is going to assess me for EDS.
It's been really frustrating, as my GP said to me 'yes you probably do have it, but there's nothing we can do so there's probably no point chasing a diagnosis' - I was floored! YES there is a point, if I do have EDS, there's so many things that it effects (that I have symptoms of) and if I know they're EDS related, i'll search for help from experts rather than bug my GP, I'll also know what to expect, as well as not being worried when another random symptom pops up because i'll be better informed.
Anyway, briefly, I have yet to have a full dislocation - but have regular subluxations (partial dislocations) of my right shoulder and right ankle - my hips are unstable and cause me a lot of pain also. I have flat feet too and regular achilles tendonitis, plantar fasciitis and torn ligaments around my ankles. I have a chest wall deformity (pectus carinatum) which looks like scoliosis in my ribs as it's curved, but my back is straight. I have thin, fragile skin, IBS, POTS (undiagnosed, but I definitely have that). I get regular cramps in my hands and feet which cause my fingers and toes to lock, and the only way to sort them out is pulling them back into place! I also have something similar to Raynauds - where if I'm in cold temperatures and then go back into warm, I have an allergic reaction, get a white lumpy rash and pass out from pain... so yeah, good times!
I was a frequent runner until the repeated injuries, and then turned to rowing, but had to quit that with hip and wrist injuries and have yet to find a sport that 'suits' me. I used to lift, but I find that hard as holding the weights gives me huge wrist pain, and swimming is recommended for hypermobile people but my shoulder crunches doing breaststroke and my feet seize up and cramp when I'm in water. So currently trying to find 'my' sport! I have a physio appointment mid May so hopefully that'll help!
Sorry this is long, it's rare you find anyone who knows what it is or what you have to go through!0 -
Ahhh! Finally I have found people..
Hypermobile scoliosis....
Having issues today never had before so was searching the goog ...
Hello there!0
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