Eds

Oliver3

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https://ohtwist.com/when-to-suspect-ehlers-danlos-syndrome-eds

So right in so many ways. So right about the black and white thinking of the medical community and their narc abuse of the codependent patient.
I'm still convinced eds is at the heart of this illness. It's amazing that it's such an understudied illness and that that medical black n white thinking has not been able to link up blatantly obvious commonalities.
Quite a chirpy read tho
 

lenora

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Hello Oliver3.....chirpy, but also a TWIT (yes, I figured that out rather easily....my husband is one as was my mother).

I had/have kyphoscolios found as a child when I really couldn't sit up, and was treated with many casts and braces all through my growing years until my father passed away when I was 14. I always thought said ks had something to do with my later problems....but where is proof when you need it? I also have severe lordosis. I'll say that I consider myself fortunate that everyone in my family considered me as normal and expected miles of walking, helping with housework (a very large family and I was oldest) and I think those things strengthened my mind and muscles for the years ahead.

I'll not go on about it....but I was later diagnosed with Syringomyelia and Arnold-Chiari Syndrome. Each was considered a separate syndrome and I had a separate surgery (failure) for SM and later had ACM Surgery which also helped with the control of my SM. The pain, though.....was truly horrible.

I was diagnosed fairly soon after with FM and yes, the ribs in the front are easily displace, and you're right...they are painful. Ice is my greatest friend in this fight and I'm glad that Ace bandage has made my life so much easier.

Yes, allergies are 12 mos. of the year now.....I can't walk in the way I used to (outside, I mean) and life has become more and more closed off. I should also mention that I'm in my mid-70's and have had 6 stents in the past 15 mos., autoimmune encephalitis and two different types of seizures (epilepsy). I'll be on meds for them and the high cholesterol and high BP I've developed in older age. I went from extremely low to high after an early menopause....have you heard of that before?

No real complaints, believe it or not. Once the anxiety and depression were taken care of I quickly resorted to my usual behavior. I'm happy and content with life and while good health would have been a major plus, it never really happened to me (us) b/c others are always affected, too. My children and grandchildren appear to me unaffected, at this point, at least.

I realize that other people have problems, some worse than mine, and I do as much as I can to help. I hope that we'll have some help for the younger ones as they come along...help soon for them. Yours, Lenora.
 

lenora

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Oh, no.....Oliver I misread that. Please don't think I was calling you a twit (although I occasionally use that name to my husband), but I see that it's actually TWIST. I can't apologize enough, so please be a gentleman and accept it. I didn't mean to insult you in the least. Yours, Lenora.
 

Oliver3

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Oh, no.....Oliver I misread that. Please don't think I was calling you a twit (although I occasionally use that name to my husband), but I see that it's actually TWIST. I can't apologize enough, so please be a gentleman and accept it. I didn't mean to insult you in the least. Yours, Lenora.
Haha...that's absolutely fine..I am a twit anyway.
I didn't write this Lenora. Just thought it was accurate.
Sorry to hear you've been through so much Lenora. You're so respectful and nice. I hope someone looks after you well
 

lenora

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Well, I'm extremely fortunate, at least thus far. We'll have married been 55 years this coming year. It was very fortuitous...for both of us. I know words like twit, well the whole vocabulary b/c my mother was a WWII War Bride (after serving in the RAF for all of the war years) and my husband is a lad from Bath....but born in the north country and later returned there for university. So I was brought up between both countries, but am now well settled in Dallas, TX.

Rod is 77 and is an absolute rock, and very kind to me. Our oldest daughter lives in Dallas, with her hubby and 2 university aged children; the youngest is in San Francisco with her husband and their two children. Both are well settled and take good care of their mama and papa. Daddy's girls...you may know the tale? Where in the U.K. are you from? There are quite a few British folks on this Forum. Sorry for making you feel diminished, shall we say? Yours, Lenora.