I have Ehlers Danlos which is inherited and suffered multiple dislocations through out my childhood/teen/early adult years. As I've aged, the dislocations have all but stopped only because (I suspect) my joints have stiffened and I now have degenerative joint disease, osteoarthritis and other related issues in my knees, hips, pelvis, back and neck.
Ehlers has several "types" and mine appears to be the more generalized type, however, they don't seem to be exclusive of symptoms from type to type. I also suffer from excessive scar tissue, cysts, calcifications of cysts (often have to have these removed or injected to reduce them), extremely thin hair and paper-like nails. Ehlers Danlos is caused by a defective collagen gene and is a connective tissue disorder, so it affects most of the body to various degrees. As you can imagine, I live daily in a great deal of pain and really only take Advil for the most part as I don't want to live on pain killers. I am very inactive now.
But, I also have Metobolic Syndrome Disease: polycystic ovaries, endometreosis, fibroids, (had to have radical hysterectomy), as well as diabetes 2, hypothyroidism, and was diagnosed with a prolactinoma (pituitary tumor) when I was in my 20's (actually that was the earliest diagnosis of the rest of the syndrome to come). This makes me think I also probably suffer from a hypothalamic disorder as yet diagnosed.
In addition, and what I'm curious about is that I have a SEVERE intolerance to heat and I do not sweat. I never have. When overheated, my skin quickly turns red, I feel sick, and have to find an immediate way to cool down. As a child, I used to get sick, throw up and pass out all the time. As a young adult, I learned to avoid being in the heat as much as possible but would still suffer from extreme headaches and dizziness if overheated. Now as a 53 yr old adult I have adapted to living most of my life indoors in air conditioning. I live in air conditioning year round, even in the winter. I rarely go out unless I have to (work, shopping, etc) and even developed an allergic reaction to sunlight (I break out in hives) by the time I was in my mid-20's. It's very hard to keep myself from feeling overheated and it limits what I can do. I find anything much over 72 or 73 degrees outside nearly unbearable.
Wondering if there are others with Ehlers or Metobolic Syndrome or Hypothalmic disorders that suffer from similar symptoms? Wondering if this is related or separate issues?
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