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Message: <blockquote data-quote="electrolyte" data-source="post: 2762775" data-attributes="member: 598486">I actually didn't know I had Ehlers-Danlos until I came back to sports after a break. I'd done my main sport since I could walk, all the way up to full time training until I was 21. It made me so strong that, aside from more pain and fatigue than everyone else, the only sign of anything amiss was when my shoulder just sort of... fell out during a simple movement (everything tore around it, but it clunked back in on its own) and a few injuries that weren't unusual. My joints were so unsupported when I came back to sports that I picked up silly injuries out of nowhere as my muscles held so tight to keep them in place. It took coming back to sports, going on a trip where I shuffled round a museum and got the worst headache, somehow decided I was going to inflict it on a character in something I was writing at the time, and ended up discovering that none of what I was experiencing was normal!I tend to react to most medications, or at the very least get the rare side effects. I only take one antihistamine, fexofenadine, because it's the only one that doesn't knock me out. I get a hangover and flu-like symptoms from several of the others. I manage MCAS by having spent 2 years detailing every food I ate/substance I was in contact with and my response so I can avoid food and environmental triggers; POTS with a high salt diet, compression socks, not standing on the spot, and trying to stay fit; EDS with being fit and strong (and mental fortitude, because no pain relief); and my blood sugar - when it's behaving - by years of learning both what science says should work and when to ignore that because of how my own body responds. It's not easy, because I'm also autistic and have ADHD, so sometimes it's "I'm eating this bowl of cereal or I won't eat anything at all" rather than what would be perfect, or losing track of time or not being able to tell anything is wrong. And of course, what works today might not work at all tomorrow because one of my other conditions has changed the playing field...I was diagnosed with MCAS and POTS by a private GP, who I could see for a follow-up if needed, but I'm otherwise on my own. No specialist for EDS because they only offer physio and pain relief, and I see a physio privately (with that same small insurance policy) who has EDS herself. 3 of the GPs I can see are knowledgable and supportive, but getting an appointment takes a while and there's not much they can do except agree to shared-care any prescriptions that come in from a specialist.But really, after more than a decade of knowing about some of these (and nearly 3 decades of blood sugar chaos), I tend to find I have to explain what most of the conditions even are to any medical professional who isn't an anaesthetist and that actually I know more than them, or certainly more about how they might interact. My usual procedure is to find the answers myself, and then get a kind GP to write it down somewhere official so it's on my records. Often my solution isn't the most logical, but the one that leaves me feeling the most well and able to handle all the other stuff.</blockquote>

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