Medical Questions > Conditions and Diseases > Genetic Disorders Forum

Ehlers Danlos?

User Profile
I am a 20 year old unemployed college student with no health insurance. When I was 11 my right shoulder started disclocating, my hips did a few times, and I started having pain and stiffness in my joints, in my hands and wrists mostly. I was diagnosed with tendonitis and had reconstructive surgery on my shoulder. My shoulder started dislocating less than 2 months after the surgery. My other shoulder recently started doing the same, popping out more than 3 times a day and they're both really wobbly and feel like they could pop out anytime. They disclocate while I sleep atleast once a month. The internet led me to erhlers danlos syndrome. I've noticed some other similar symptoms; my pinkies pop in and out so much so that I can't use them to type, this also happens with my thumbs but not as much, my fingers bend back really far and it only causes stiffness, sometimes I lose strength in my hands and can't even pick up a pillow, I crack my knees and ankles all the time to relieve discomfort, I have trouble maintaining my body temperature (so much so my boyfriend always has either a hoodie or a bottle of cold water for me), I have crazy teeth promblems like lack of enamal and lots of cavities, my last trip to the dentist I had 9 cavities and have experienced tooth crumbling twice, I'm really nearsighted with astigmatism and I squint constantly, my jaw clicks, and my skin is pale and kind of see through but my so is my grandmother's so I don't know about that.

I can't really go to a doctor but I'm in pain so much of the time. I'm an artist and I'm starting to really worry about my hands. I just want to know if I'm being a hypochondriac or if there's a chance that this is what's wrong with me.
Did you find this post helpful?
|

replied February 21st, 2011
Ehlers Danlos Genetic testing
Hey artzombie, you should look into a genetic test. We just had one for our son and it ruled out ehlers danlos but your case sounds like a closer match. It really helps to have a diagnosis. My son's was nail patella syndrome.
|
Did you find this post helpful?

replied June 10th, 2011
I am kind of in the same boat you are in -- except I have insurance right now, but not for long as I am about to turn 26 and am really afraid of what to do when I get kicked off my mom's insurance.

I rely heavily on narcotics, and a medication called Enbrel -- I really don't know what I would do without them, so I am desperate to find a job where I get insurance...which is difficult in itself.

What I suggest for you -- do you have any access to a pool? At a rehab place I went to they had a warm water pool I could use, it was the only way I could exercise. (I think even YMCAs have warm water pools) My Ehlers Danlos is really severe, so much so that I was pretty paralyzed between the ages of 22 and 24 and could barely get around on crutches.
Also, I believe you can obtain something called a TENS unit without insurance. You place electrodes on the area bothering you most, and it's a massage type deal.

I am thinking about trying one of the only things I haven't tried yet, acupunture...which insurance can help with but you don't necessarily need it.

I literally feel your pain, I wish you luck.
|
Did you find this post helpful?