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Has anyone had joints look like this after sublocations ?

Every time I sublocate a joint or injure myself, whether I’m aware of it at the time or not, it usually results in a “flare up,” like this. My rheumatologist was mystified for months. The first rheumatologist sent me home with vitamin D and a muscle relaxer. My first massive flare up was in 2016. Since then, they’ve become increasingly frequent and I’ve added a litany of other problems to my growing list of symptoms and issues. We’re slowly, (soooo slowly), working towards a referral to the geneticist for a formal EDS diagnosis. She’s content to wait and take her time because, “the pain and other symptoms aren’t going anywhere.” I’m so frustrated. How much damage am I doing to my body while I’m waiting in limbo? #edsscreening


Questions for first doctor appointment #ChronicIllnessEDS #edsscreening #edsundiagnosed #EhlersDanlosSyndrome

I’m going to my doctor tomorrow to talk about the possibility of EDS. We’ve been looking for answers for about 3+ years. After to constant research, I think all the symptoms including the ones I’d never think to link together sound very much like EDS. So I’ve asked her to do some research and then get back to me. So tomorrow is the day. What would you ask?


Why?!?  #Fibromyalgia #edsscreening #aorticrootdilation

I am in the midst of feeling extremely down and helpless. This past year 2019 was a hot mess family wise and physically. I found my chronic pain previously related to solely to fibromyalgia increasing. I was always told that fibro pain is not progressive and I started experiencing other symptoms. Since August I was told that I have unspecified neutropenia have dealt with a 30lb weight loss (and counting) in a matter of months, lack of appetite, pain, pain and more pain. I have had to have an endoscopy and a colonoscopy to see if there was anything else more "nefarious" going on. During the course of all of this and doing my own research, I brought to the attention of my doctor's that I would like to be screened for EDS hypermobility type, as I feel that the symptoms I have can be related to that not to mention that my brother and mother have also exhibited signs too. As I am in the midst of this screening process, I have had to go to opthamology and cardiology for an echocardiogram, which, incidentally found that I have aortic root and ascending aorta dilation. I don't see the specialist until February and my mind is going crazy because  I am worried that I can drop dead at any flipping moment!

#depressedandinpain #FibromyalgiaSucks #edsscreening #Brokenbody