The story of Nichole
Hello my name is Nichole and I’m 44yo. Earlier this month I was diagnosed with hypermobile ehlers danlos syndrome dysautonomia and a whole bunch of other stuff and my mind is just constantly racing.
When I was young I had scoliosis, asthma, and weird allergies. That didn’t stop me though from playing sports and being passionate about dance. I do remember looking back I did have a lot of knee and shin issues always having to wear compression sleeve. By my 20s I would then endure years of gyn,gi, back issues, and deal with utter exhaustion that would last into my 30s.
By my late 30s I had a career change and moved . I picked my local pcp and after a a little while and major things happening it was time to fire him. I found my new pcp within the last year and I think I am just completely overwhelming them. They don’t understand heck I really don’t understand it fully. But I do know I am not right. Luckily I found a great rheumatologist who I have been seeing for an awhile now and he is the one who suspected this syndrome and referred me out.
Right now I don’t have follow up til the end of March with both rheum and cardio.
I have been put on more meds ,
Vitamins, this whole drinking regimen with additives, need compression garments, and it goes on and on.
I don’t sleep, have horrific night sweats, losing weight, my mind is going crazy, utterly exhausted , in constant pain, my hips n knees pop out consistently , my vision and brain get foggy, and my heart rate just standing has been 130-140s this past week. This is just to mention a few things going on and not also frieking out if my daughter will get this. I don’t know who else out there has anything remotely like me and my symptoms but i wouldn’t wish them on anyone . Especially when people don’t believe you 9 times outta 10. But this one time I was listened too and I’m glad I found my team and hope we figure this out! So I guess I can say I have to be zebra strong now …