So a doctor tells me today that I have Ehlers-Danlos syndrome, the hypermobility type.
That apparently explains the pains in the wrists, shoulders, and possibly right ankle. I was able to look up some information online, but I wasn’t able to find treatment to manage the symptoms. Well, one site mentioned treating it like rheumatism.
I guess I should start carrying a card in my wallet to let people know.
I found a list of symptoms of Ehlers-Danlos Symdrome on the UW Medicine site.
- skin problems – Yes, around fingers
- soft velvet-like skin – I wish
- fragile skin that bruises or tears easily - No
- stretchy rubber band-like skin – No
- easy or severe bruising – No
- poor and slow wound healing (usually taking weeks to months to heal) – Maybe, my ankle is taking a long time to heal
- small harmless bumps under the skin - No
- joint problems - Yes
- loose unstable joints causing frequent dislocations usually occurring in the shoulders, knees, hips, collar bone or jaw - Yes
- double jointedness (hyper extensible joints), extreme in some cases – Yes, shoulders, thumbs, others places
- joint pain from frequent dislocation – Yes, shoulders, wrists, knees
- eye problems – Maybe, this isn’t very definite. I do have eye problems but I don’t know if they are related.
- nearsightedness, occasionally extreme – Yes, have worn glasses since a child.
The doctor I saw today noticed the hypermobility – the wrists, ankles, and other joints able to bend far, and shoulders and wrists dislocate and relocate at will.
2 comments:
I have a card from the Hypermobility Syndrome Association that I keep in my wallet to alert people to the potential problems. I always have visions of getting in an accident, being unconcious and then having someone dislocate all my joints by mishandling me!
It's a good idea. Check out the HMSA - their forums are really useful. Physio and appropriate pain relief are the main things you'll need. The physio should be for core and joint stabilisation, strengthening the muscles so that they can support your joints better. If you have very flat feet (another frequent problem) you should also look into orthotics.
I've got links to various helpful sites on my blog.
I'm an EDNF member (www.ednf.org) and carry one of their info cards in my wallet just behind my license. Their shop has some excellent brochures you can order for doctor visits. Most of the site is free with a quick registration, but a small fee will give you access to much more content, including the informative message boards.
I also have HEDS. I've only known for 3 years. You'd think with all the weird stuff that crops up in us that they'd diagnose more people earlier in life. That's what awareness and advocacy is about though. Takes time, but I feel it's worthwhile talking to whoever wants to know about EDS. Anyway, I'm kind of like ArcheryGirl here - same types of treatments, and check out my blog.
Hang in there!
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