Ehlers Danlos

I am a 50 year old female and have been dealing with chronic pain and weird symptoms all my life.  As a child I suffered from chronic tonsil infections.  I used to avoid the sun because I would overheat because I did not sweat. I was always very flexible and everyone used to comment on how soft my skin was.  By the time I was 15 I started experiencing irregular and painful menstrual cyles as well as anemia and migraines.  My blood pressure has always been on the low side.   By the time I hit my early 20's I started having trouble with my intestines.  At 23 I went to the hospital with severe abdominal pain.  My bowels were leaking and were ready to rupture so they performed emergency surgery.  This was 3 weeks before my wedding and I had developed a severe infection in the wound which they were considering packing and leaving open. After aggressive antibiotic treatment the wound started to slowly heal.  Through my life I have had a number of surgeries including colon cancer.  Each time another infection followed.  Every year my symptoms seem to be getting worse, widespread joint and muscle pain, trouble with finding a vein and veins blowing when given an IV or drawing blood,  bruising every time I get a needle,  TMJ, degenerative disc disease, chest pain, edema, weakness in arms and legs etc.  A couple of years ago I was referred to a Neurologist because I had 2 bad migraine attacks that affected my left eye. These were not the first severe migraines I have suffered from or the last.  During his examination he did discover that I had loose ligaments.  I was sent for an MRI, the brain scan showed small vessel disease, increased white matter and some slightly prominent vessels that in their opinion (the unlikely possibility of a small vascular malformation or dural fistula).  Which they told me not to worry about.  I recently had a conversation with my sister and she had mentioned that our scars are not normal.  She works in the medical field and had showed a hematologist she worked with her scars and she was told they were cigarette paper scars and it could be  Ehlers Danlos.   My sister also has problems with joint dislocation.   All my scars look like cigarette paper scars and seem to widen the older they get.  Other abnormalities, flat feet, born with no wisdom teeth, B12 deficiency, lazy eye, trouble with vision and sensitivity to light, shortness of breath, numbness and pins & needles, muscle twitching and spasms,  burning in my calves etc.  Some days I feel like I am going to end up in a wheelchair.  There are also other siblings in my family who suffer from some similar symptoms.  They diagnosed me with fibromyalgia.   Could this be Ehlers Danlos?  

[julie2392]

it sure sounds like it. i was just diagnosed... and im 17..ya. i have alot of the same things.. flat feet, i sublux (partial dislocation) all the time.  example. i was was picking up and box and my shoulder poped out.. another thing is it takes me a long time to heal. my pain is mostly all in my joints. all my joints hurt, at all times, and when i use them it gets worse, for example i straignted my hair and couple of days ago and i couldnt use my hands for a day and a half. i have also always been very flexable and had to quit gymnastics when i was little because i was so flexible, that i was hurting myself, and i also have very soft skin.. which i don;t mind.lol.. but i was diagnosed by going to a othropedic surgeon so maybe try that, or go to a geneticsits. this is there cup of tea.
good luck. :)

[hannyhanny]

Medications, acupuncture, local electrical stimulation, and brain stimulation, as well as surgery, are some treatments for chronic pain. Some physicians use placebos, which in some cases has resulted in a lessening or elimination of pain. Psychotherapy, relaxation and medication therapies, biofeedback, and behavior modification may also be employed to treat chronic pain.