hypermobility

I have been in constant pain for over 8 years. I have gone through an insane amount of doctors and specialists to find out what was wrong with me. Medical test after medical test came back negative, and I was told over and over again that nothing was wrong or that they did not know what was wrong. I got diagnosed with things that had nothing to do with the pain I was experiencing. Meanwhile my pain worsened, and I started getting even more symptoms. The amount of times doctors did not take me seriously, or told me it was because of my anxiety, or told me to just exercise, or told me it was just growing pains, happened over and over again. I tried physiotherapy, psychotherapy, diets, I did everything they told me to and my pain just got worse. I decided to do my own research, something doctors say not to do, but something you have to do when every doctor you have gone to for years has no idea what is wrong. And I found out about EDS and hypermobility, rare disorders that are severely under diagnosed due to the lack of awareness people have of them. I saw that I have many of the symptoms, so I brought this to my doctor’s attention and he referred me to an EDS clinic. A clinic with a two year wait list. I had lost hope by the time my appointment came around. They were going to tell me I do not have it and I just have to continue trying to cope with this awful pain without knowing what is causing it. Years were spent questioning my sanity, questioning if I’m just making it up or being sensitive somehow. So I braced myself for the same answer I had gotten so many times before. Then I was told I have Hypermobile Spectrum Disorder, or Joint Hypermobility Syndrome. I did not take it in fully at first. I thought maybe they had looked at the wrong chart and it was a mistake, but it wasn’t. And I am actually going to get proper help and treatment. It is such an amazing feeling to finally have a diagnosis, to finally get proper help, but at the same time I feel frustrated. Frustrated that it took this long, frustrated that so many doctors did not take me seriously, frustrated at how many years I could have spent doing the right treatment if I had just been diagnosed earlier. I have seen so many similar stories about people with chronic pain and it makes me angry how many people have experienced and are experiencing things like this. I hope more awareness can be spread about this issue. #JointHypermobilitySyndrome #ChronicIllness #ChronicPain #Hypermobility

I've been diagnosed with hypermobility spectrum disorder very recently. I'm currently trying to process everything and work out what help I need to go back to the rheumatology team in January. I've had symptoms since I was a child but I've been really struggling with pain in my hands and feet particularly in the morning. I've had this for over a year now and been going back and forth with doctors until I finally got to see a GP who referred me for every blood test she could think of and referred me to rheumatology and cardiology to cover all the bases. I'd be interested if anyone has tips on exercises or pain management. I'd love to get fit again but the pain next day just makes it unbearable. #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #Hypermobility #PainManagement #Pain #Exercise

Hi, my name is KLeigh Cat. I've been recently diagnosed with fibromyalgia and hypermobility spectrum disorder. All of my random quirks and seemingly unrelated health issues suddenly make so much sense! #Hypermobility #Fibromyalgia #ChronicPain

Hello everyone has anyone heard anything about scapula dyskinesis? Or experience with it ? Sometimes called winging. My scapula is twisting rather than sliding IDK I'm confused. Apparently I've had this issue for a long time but the pain was continuously ignore by every doctor I asked. New doctor tells me that's what it is and pretty much ended the conversation at that. Anyone got any advice or suggestions #EhlersDanlosSyndrome #ChronicIllnessEDS #Hypermobility #ChronicPain