If you haven’t had genetic testing that could be a helpful step. I have a mutation of FLNA gene that mimics EDS symptoms but also gives other symptoms like migraines, asthma, and heart defects. A geneticist can test a panel of genes that are associated with hyper mobility

I'd suggest genetic testing as well. Could be marfans. What are your symptoms?

I've run the gamut of testing with docs. What symptoms are you dealing with?

And yes, getting genetic testing is always a good idea. Meant to add that.

I met someone who had muscular atrophy I think, but was incorrectly dx with EDS first. Not sure if it helps but there are many other types of connective tissue diseases as well. Sending lots of love.

Unfortunately genetic testing is not yet available for hEDS as they haven't found the gene responsible for this (although there are some studies going on now), but it is for other forms of EDS. You would need to see a good rheumatologist with experience/specialism in connective tissue disorders. Hypermobility exists on a spectrum which goes from benign hypermobility to hEDS at the opposite end. If you don't fit the criteria for EDS you may well have HSD (hypermobility spectrum disorder). However if you see someone who doesn't have experience with this, they could diagnose you with fibromyalgia and similar things. I don't know where in the world you are but it's worth checking whether there is a National EDS support charity and contact them asking for advice on your location and which professional to see. Hope this helps xx

I was misdiagnosed with Fibromyalgia instead of EDS if that’s what you’re asking lol

I was diagnosed with fibromyalgia but the doctor who diagnosed me didn't even ask me anything or look at my joints except asking if any of my family suffers from anything, his face lit up when I told him my mum had fibromyalgia, I fit heds criteria not fibromyalgia, he couldn't be asked to put in an effort

I completely get this. I'm sorry I can't fully answer your question, I just wanted you to know, you're not alone.

Sadly drs just slap the fibro diagnosis on people they deem too complex or just don't know what's going on with them. Because they simply cba running tests and figuring out what's actually going on. They Pat you on the head, give you a leaflet then throw meds at you and send you on your way. If you need to go to A&E it's pointless they will see fibromyalgia and basically say we can't (actually it's won't) help you because it's a chronic issue no matter how much pain your in, they don't seem to grasp the concept of the pain is unbearable hence I am here again it's a Pat on the head have meds thrown at you then send you on your way. It's nearly impossible to get a second opinion cause again they see fibromyalgia and again they dismiss you and agree with the doctor who diagnosed you. Fibro is misdiagnosed all the time it could be one or more different conditions but again they won't want to admit they were wrong so they don't want to double check. Many people with fibro probably have something completely different. They throw meds at us and then have the nerve to call us drug seekers which is far from the truth 🙄

I am having similar issues where I am trying to figure out my joint instability and problems with temperature disregulation. I have hypermobility mostly in my knees, ankles and hips. However every joint gets widespread stabbing/shooting pains and I have subluxations at worst, not really full on dislocation. I also get dizzy and have feelings like I am going to faint. However I usually have time to get to a safe spot before it really gets bad. However I definitely don't meet too much of the score thing most people test and although my skin is fragile and slow to heal properly it's not stretchy either.