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Invisible illness how do you cope?
Autoimmune Diseases | Last Active: 4 days ago | Replies (25)Comment receiving replies
I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed ankle fusions my ortho ordered genetic testing at Tulane. I was diagnosed with EDS which is a connective tissue disorder. I don't produce enough collagen and my ligaments and tendons are really weak. Connective tissue affects digestion, swallowing, eye sight, etc. There is no treatment. My Rheumatologist sent a lot of bloodwork to Mayo and I was diagnosed with RA, POTS, Sjorgens Syndrome and Fibromyalgia. I was also diagnosed with St4 Lymphoma 5 yrs ago. Thankfully I have been in remission for 3 yrs now but the chemo and immunotherapy wrecked what little immune system I had. My 31 daughter is showing very similar symptoms and she sees my Dr. this week. I hate when people say how wonderful I look when I'm struggling to just go to the grocery store😂I look for the good and make sure to keep laughter in my life and my 5 grandkids are the best medicine!
I wish you well❤️
Replies to "I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed..."
Have you looked into Low Dose Naltrexone? It has reduced my joint pain. It has been a game changer?
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Thanks for sharing! What a journey. Yes- that’s why I have done the genetic testing - for my 3 and 8 grands! Tho not much you can do about where I am - very like you actually … and it’s the ligaments and tendons as well as muscles that are atrophying . Partially due to RA and steroid dependence - but I may learn what to expect better too - good and not so good? Keep on fighting - PT!