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EDS sucks

Oct 28, 2014 9:11 PM

im sp tired of popping out joints and muscle spasms and every part of my body clicking and aching

Oct 29, 2014 4:37 AM

where are you? I'm near Los Angeles. did knee shots work for you? they didn't work too well for me.

Oct 29, 2014 5:49 AM

what's EDS? I have Fibro/Lupus/RA and Osteoporosis. I have had inflammatory fluid aspirated from both knees and cortisone shots in knees and soles of feet about four times this year. I snap, pop, and swell. shots worked better at first. now just reliving the pressure of the fluid helps for a while, but it just comes back. on orencia & typical handful of pills. physical therapy 2x a week (this does help). in central Texas.

Nov 02, 2014 1:04 AM

ehler danlos syndrome, hypermobility type, though it can affect other areas critically if of another type. it gives you early onset osteoarthritis which makes your twenties feel like your eighties. I used to be a star athlete, using my hypermobile shoulders to my advantage on my varsity swim team. it was then that I first noticed it...my elbows were in excruciating pain from their 1o % of hypermobile range, so I adjusted my stroke and saved my elbows. my wrists! knees! and shoulders did not fare so well. I walk with a cane always! and I am 27 and slender. people stare at me sometimes and I know they are wondering....they used to ask, but now I have that look about me that I am PERMANENTly disabled, and people just pretend not to notice. I prefer when people compliment my colorful canes, not when they question me though, unless they are currently carrying a cane or using a walker. I own a walker but find it embarrassing to use since it ruins my good posture.

anyway, eds people also tend to have riskier pregnancies, but I hate kids so at least that's not a bummer!

Nov 07, 2014 3:02 PM

Hi, fellow EDSer here too... ;) london UK

Nov 14, 2014 2:15 AM

Hi I'am 46 and have been living with Jhm and eds v11c and osteoporosis for years ,and now in a wheelchair 24/7 And I live in cornwall ,

Nov 14, 2014 2:47 PM

me too. how is your treatment going?

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