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#1
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Any other Ehlers Danlos Disorder sufferers amongst us?
I found out about a year ago I suffer from this genetic disorder and it's really starting to wear me down. I was wondering if anyone else on here has it?
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#2
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What are the perks?
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#3
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What is your age, and how does this disorder manifest itself in it's victims?
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#4
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I had not heard of this before. I had to look it up. Sorry that you have this.
__________________
Current: 1985 300D aka Miss Margaret 1991 300SE aka Alarice 1995 SL320 aka Samantha 1997 K1500 Silverado Past: 1999 E300 ex-wife got it and let her son ruin it 1984 190 2.3 ex-wife got it and let her son destroy a great car 1985 300D (CA version) aka Maybelline lost to deer at high speed. 1981 300D aka Madeline (went to salvage at near 400k) rusty, yet best car I ever drove Wishlist: McFarlan TV6 (only a few privately owned) ReVere with Rochester engine 1917 Premier (only one left) |
#6
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Aye, aye -- type 3 here! Thankfully I've found out early so that I can work on strengthening to hopefully ward off joint injuries for a longer time. My mother has had major joint problems and surgeries ever since the age of 30 and has lived in constant pain for many years now . Motivation for me to do my excersizes (not that she didn't do them -- we only found out last year).
What type are you?
__________________
"Senior Luna, your sense of humor is still loco... but we love it, anyway." -rickymay ____ "Your sense of humor is still loco... " -MBeige ____ "Señor Luna, your sense of humor is quite järjetön" -Delibes 1982 300SD -- 211k, Texas car, tranny issues ____ 1979 240D 4-speed 234k -- turbo and tuned IP, third world taxi hot rod 2 Samuel 12:13: "David said to Nathan, “I have sinned against the Lord.” And Nathan said to David, “The Lord also has put away your sin; you shall not die." |
#7
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Quote:
Most of my life I knew I was "double jointed" in odd places, where the humerus interacts at the shoulder, the heads of both femurs, ankles. Now I know that it's not double jointed ness but actual dislocations taking place. I have had a few injuries that exacerbated my pain. I have broken both feet, three twist fractures on the left in the metatarsals (long bones) and an avulsion/Jones fracture of the fifth metatarsal on the right. Dec 25th of last year I had mesh repair surgery done for three hernias. To put it bluntly it never feels like any two parts of my body are in the same place on two different days. I am 6'4" and weigh 200 pounds, I exercise regularly, but the pain in the last three years has been ramping up dramatically. I try to golf regularly but didn't play from '07 through '13 because I had frankly given up in ever being able to play again. Suffice it to say this disease has changed my outlook on life. |
#8
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Sorry to hear you have to suffer through all that. I've always wondered if I have EDS or something similar, or if I'm just a regular flexible person. I started having severe pain issues/neuritis in college and was told it had to do with hypermobility, but after a lot of physical therapy that particular episode subsided over the course of a couple years and it hasn't been that bad since. I still get a lot of pain in my sacroiliac joints, which I can feel and hear move around a lot, and get a lot of unexplained pain, popping and locking in other joints. But no major dislocations. I've also had some recent idiopathic dysautonomia ... gastroparesis and hypotension/orthostatic hypotension, diagnosed three years apart. Plus I'm very myopic, elastic skin, heart murmur (no mitral valve prolapse though), etc. I suspect I'm just flexible (as opposed to a genetic disorder), and anyone flexible is going to have more wear and tear than the average person. My ankles, knees and SI joints in particular ... doing physical therapy now so hopefully that's all I need.
Anyhow, as a result of just being curious about it, I've read a lot on EDS and Hypermobility Syndrome and realize how much worse other people have than me. JiveTurkey, I hope you can get a final answer on your diagnosis and have a specialist help you find a way to cope with it. And Jooseppi, I hope knowing what you're dealing with and doing the phys therapy helps you ward off the problems your mom had.
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1987 300D, arctic white/palomino--314,000 miles 1978 240D 4-speed, Euro Delivery, light ivory/bamboo--370,000 miles 2005 Jeep Liberty CRD Limited, light khaki/slate--140,000 miles 2018 Chevy Cruze diesel, 6-speed manual, satin steel metallic/kalahari--19,000 miles 1982 Peugeot 505 diesel, 4-speed manual, blue/blue, 130,000 miles 1995 S320, black/parchment--34,000 miles (Dad's car) |
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