I just found out that I have close family members who have EDS of the hypermobility type. It is often misdiagnosed as fibromyalgia. As soon as my Dr was informed of the possibility they set me up with a geneticist. My niece showed me the letter of diagnosis from the geneticist they sent her to and he stated clearly that EDS is often misdiagnosed as fibro. I will know next month if that's what I actually have.

I was diagnosed with fibromyalgia 20 years ago. Last year I saw a neurologist about my migraines. During his examination he discovered I was hypermobile. I have also dislocated my knee three times in the past. I am now awaiting genetic testing for EDS. If anyone is hypermobile (double jointed) make sure to mention it to your doctor/specialist because treatment is different. If you have EDS it is not recommended to see a chiropractor or do physiotherapy unless the physiotherapist is trained about EDS.

I am glad you found my answer useful, I have always found that with all my ailments the more I know about them the more control I have. Yes as far as being sick I am a control freak. My doctor (the GP) laughs about it and when I come in the first thing he always asks "How many questions do you have today?"
However, it helps me to know that I am doing the right things to help and that is why I found this site so useful. I have learned a lot of things myself being here.
I wish you all the best with your illness and hope it improves. Regards and many hugs.

Hi I have taken a long time to answer, I actually have two grandkids diagnosed with EDS they were given a life sentence of 3/4years. However, their mother is absolutely fantastic and they are now 10 years and 13 years old and do have set backs and trips to the hospital.The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose.
What you have is a classic symptom of EDS. The main medicine for this is exercise and hope that you minimise falls etc. It's funny but I also have a connective tissue ailment called Scleroderma where I produce too much collagen which then causing scarring. As mine is profuse, the scarring occurs all over the body so my muscles tighten quite the opposite to your. I will attach a link to a website which will give you more info and yes see your doctor on a regular basis.

http://www.chronicpainpartners.com/

Hugs and good wishes

Didn't get the chance to see him since. I'm traveling a lot lately for work. I defenetly will though.