Post by mugwump on Jun 20, 2011 9:38:45 GMT -5
Just wanted to post here to get this topic started. I was born with Hypermobility Type Ehlers Danlos (formally known as Type III). It comes through my mother's side, and so do my autoimmmune issues for that matter.
I started seeing doctors for symptoms when I was 9-10 years old and I was finally diagnosed at the age of 22. In that long gap in between doctors mainly told me that I was crazy, over dramatic, attention-seeking, and just plain old making it up.
My main symptoms are widespread joint pain (which feels very different in quality to my UCTD joint pain), joint laxity (previous to UCTD I was a 7/9 on the Beighton Scale), joint instability, subluxations and dislocations of almost every joint I can think of, and scoliosis. I have some skin and organ involvement--heart murmur, mildly hyperextensive skin, bruising, constipation, slow healing, incomplete rectal prolapse, hiatal hernia--but thankfully no more than that so far.
It has really kicked up in the past 5 years. I use a cane to walk to keep me from falling when my joints collapse or pop out, and when I'm not on the cane I use a wheelchair. My dislocations are pretty frequent, but thankfully I can reduce them either myself or with a little help from a friend. My wrists and shoulders usually come out a few times a day. Other joints like fingers, elbows, hips or knees come out a couple of times a week. It can be from silly everyday things. I've subluxated a hip from sneezing once!
There is no cure for EDS and there really isn't much treatment at all. I do pool physical therapy on my own during the summer, but that's really my only treatment for EDS. It's just adaptive equipment really like special pens and pencils.
I was told that having EDS would making me more susceptible to other connective tissue disease like autoimmune problems, but I never really thought that much of it. Oops!
I started seeing doctors for symptoms when I was 9-10 years old and I was finally diagnosed at the age of 22. In that long gap in between doctors mainly told me that I was crazy, over dramatic, attention-seeking, and just plain old making it up.
My main symptoms are widespread joint pain (which feels very different in quality to my UCTD joint pain), joint laxity (previous to UCTD I was a 7/9 on the Beighton Scale), joint instability, subluxations and dislocations of almost every joint I can think of, and scoliosis. I have some skin and organ involvement--heart murmur, mildly hyperextensive skin, bruising, constipation, slow healing, incomplete rectal prolapse, hiatal hernia--but thankfully no more than that so far.
It has really kicked up in the past 5 years. I use a cane to walk to keep me from falling when my joints collapse or pop out, and when I'm not on the cane I use a wheelchair. My dislocations are pretty frequent, but thankfully I can reduce them either myself or with a little help from a friend. My wrists and shoulders usually come out a few times a day. Other joints like fingers, elbows, hips or knees come out a couple of times a week. It can be from silly everyday things. I've subluxated a hip from sneezing once!
There is no cure for EDS and there really isn't much treatment at all. I do pool physical therapy on my own during the summer, but that's really my only treatment for EDS. It's just adaptive equipment really like special pens and pencils.
I was told that having EDS would making me more susceptible to other connective tissue disease like autoimmune problems, but I never really thought that much of it. Oops!