The puzzle of EDS

[Anne2018]

My son (26) was diagnosed with hEDS & POTS this year after 16 years of pain and anxiety. My daughter & son from another marriage have got odd symptoms that is linked to EDS. I seem to have been fine for most of my life but since I started going through the menopause have developed symptoms similar to POTS, have always put most down to still having symptoms of menopause but am now thinking it could be POTS as I cannot seem to regulate my body temperature 😂

Has anybody else had similar issues

[cyberbarn]

There is a natural progress to EDS that the clinician and researcher Marco Castori has written about. Some people stay in the more able phase for longer, others like my son, seem to fast track straight to the end stage.

ehlers-danlos.com/pdf/2017-...

[Anne2018 in reply to cyberbarn]

Thank you, I read through the link

[AiMax]

Hi Anne. I'm just starting the process of being diagnosed. My menopause has flared up symptoms of Eds and MCAS I believe I have, and possibly PoTs. I have mobile joints, stretchy soft skin, GERDs, bruising and many other symptoms which, when they caused a problem, I just dealt with it. I get two types of hot flushes. The menopause ones come like a wave and after a couple of minute, fade away. The other ones I get are horrible. They suddenly come. I feel nauseated and dizzy often with a headache. It often corresponds with pain in my stomach and these hot flushes hang around for anything up to 20 minutes a go. I get cold in a warm room and nothing warms me up, and its painful. I also get palpitations and shortness of breath which is new, a blurring of my vision to the beat of my heart, and an assortment of other symptoms none of which I had before the menopause other than the stomach issues. So I think that the menopause does play a part in flaring up these symptoms but I can't find the answer as to why or of how long this goes on for. There doesn't seem to be the research or info out there. It's a matter of finding out what works by trial and error. Of us who have symptoms of Eds/hEds/PoTs/MCAS we can be so different with the symptoms we have and how they affect us but I do believe the menopause may cause symptoms to increase. That's from my experience though.

[Anne2018 in reply to AiMax]

Thank you, I agree that the hot flushes are very different & last year I felt like I was cooking from the inside out and so many side effects with them. Looking back over the years I’ve had many symptoms that didn’t fit anything I knew and was just too busy to bother anyone with.

When my youngest son was diagnosed in November the specialist kept asking me if I was ok, as it was my sons appointment I didn’t ask him why apart from my children inheriting it from me.

It’s now time for me to find out fir sure how I am affected by this puzzle.

Good luck with your journey

[AiMax in reply to Anne2018]

Thank you. I think for both of us it may answer a lot of unanswered questions about our health over the years. I hope so. I wish you well.