By Tyra on Saturday, February 03, 2001 - 02:21 pm:

I have recently been diagnosed with EDS... First of all I have to say that I have alot of questions about EDS and I think that this forum is perfect for getting other peoples views but also to get the help from others when you think that you´re going insain:)
I wonder if anyone has the same problem as me...
After a days hard work I am almost not able to get up out of a chair or out of bed, all of this because of my hip... I get a sharp pain in it and almost nothing that I do seem to help... What could be the cause of this and have anyone got the same problem as me?
Thanks alot!

By Dee on Sunday, February 04, 2001 - 08:11 am:

Tyra

I have the exact same problem - my hips are usually OK during the morning but by the evening I can hardly get out of the chair and when I do I have to stand for a few seconds before I can walk. I haven't found a solution yet unfortunately. I also can't sit in a chair for more than a few minutes without changing position because of discomfort. Do you get this?

I have been diagnosed with Benign Joint Hypermobility Syndrome (not EDS). I went to the specialist because I am now getting pain in my upper and lower arms and I can't lift anything heavier than a cup of tea without it hurting. Does anyone know if this will get worse? The specialist (a geneticist) didn't know much about pain management but is referring me to a rheumatologist.

Dee

By Elaine on Sunday, February 04, 2001 - 10:03 am:

Hey Dee and Tyra,

I definitely have the same trouble with my hips. I have learned never to sit with my legs crossed, because even though it feels comfortable at the time, I know that my hip is slowly slipping out of the socket while I sit there. I have found almost all kinds of exercise pretty useless for my hips, because it always exacerbates the pain even if my muscles are getting stronger. The thing that's worked for me is massage therapy -- finding someone good and saving up to let them help me out. Apparently a lot of my pain was due to a pinched sciatic nerve, and once that was rectified, my hips began hurting a lot less. The best advice I can offer is don't give up -- there is a way out of pain, you just have to find it.

Dee, I also get arm pain. I have found after years of confusion that it's usually due to a joint slipping and throwing tension around into the muscles. In my case, both shoulders are weak, but I'll often feel pain in my wrists, or my forearms will be tight, and I can't figure out why. As for whether it will get worse -- there are so many factors involved that it's difficult to say. As you age your ligaments will stiffen, which, in theory, might decrease pain. Lifestyle has everything to do with it, apparently. Anyway, good luck with your rheumatologist.

Elaine

By Jess on Sunday, December 08, 2002 - 02:19 pm:

hi.. my name is Jess.. i'm 15 and last may i got diagnosed w/ EDS hypermobility type. i suffer from pain everyday. I had to stop irish dance becasue of it. i was on my tenth year of it. it was something that i loved. it was my life. my knees and hips usually dislocate, and so do my shoulders and clavical. i have the worst trouble w/ mostly all of my joints. knees, hips, shoulders, wrist, thumb, toes, ankles, clavical, and even my elbows. i take advil usually for the pain, but i feel that aleve works a lot better. i also ice my joints and go to physical terapy twice a week for an hour to strengthen my joints. i walk on the tredmil, ride the bike, bicep and tricep curls and straigh length lifts. yesterday i got re-evaluated by the physical therapist and found that my left knee bends at 155 degress and my right knee bends at 160 degress when the normal persons knee bends at 140 degress. i also have mild skin elasticity. i can't do many things anymore. haha i just sounded like an old lady. but i really can't. I feel as if when i'm writing an essay for school, i can't write anymore after like 2 or 3 paragraphs because my arm gets stiff and achey. i ahve to use the elevator in school becasue i'm nto allowed to take the stairs anymore. i can't even play gym, or pull a suitcase because my shoulder dislocates. i also can't carry a backpack or anything heavy. many times after a day of walking around the mall or somwhere, that evening i can't sleep because of the pain in my legs. and the next morning i can't even walk. sometimes i can't even go to school becasue of the pain. in school i leave 5 min early so i can use the elevator. my teachers sometimes don't even let me go. they don't understand my disorder. hopefully i will get more people to understand w/ the support group that my mom and i are going to start for Long Island. if anyone has any questions about EDS i will do anything to help. i think its great that people make forums like these, its a great support system for people to talk to other poeple who understand. hope to talk to you soon! xox Jess