How to get tested for hEDS or EDS
Hey, so I've always been bendy. I mainly noticed it in my hands and for many years my "party trick" was bending my fingers backwards and people being all grossed out. Didn't pay much attention to it until I started getting hand pain (now in my late 30s). I went to a physio and he started pulling my skin and pushing my fingers, obviously my hypermobility came up and he was the first person to mention EDS as he thought i might meet the criteria. He scored me 9 on the Beighton scale. I then went to see another physio at the local diagnostic centre for pain in my feet - I was convinced I had arthritis because of the burning pain. She said there was no record of my Beighton scale, did it again, scored me 9 but to both the hypermobility and my worries about arthritis she said "what difference does it make if you have it or dont?" "You're just bendy" etc. She was trying to push back on the xray amd it turned out I didnt have arthritis- just flat feet and bunions. However I mentioned EDS and the response was that its very rare and hard to diagnose. She made me lie down and stand up and because I wasnt super dizzy said I don't have EDS. I regularly get dizzy when I stand up, I just didnt then. I also always have low blood pressure, I have this ridiculously annoying bladder that I think I've emptied but 5 mins later I need to go again, I wake up 2 to 3 times in the night to wee. My hands are getting stiffer, i have had trigger thumb in both hands (currently just one), occasionally I have the sensation of my kneecaps floating (happened more when I was younger) ALL parts of me pop - including my chest and hips. I have TMJ because I'm always clenching my teeth. I get pain when I'm driving in my hip, lower back, feet, shins and knees. I'm 38 not 68! I'm either very constipated or going loads. I have allergies (undefined) and ongoing sinus issues and nasal back drip. I'm always tired and get headaches and neck pain ALOT which could just be tension I guess. I feel like a hypochondriac whenever I mention anything to GPs. What does this sound like to you? Is it worth pursuing an EDS diagnosis with the NHS? One of the things this physio woman used to dismiss is that I've never had a joint dislocation- to say that I am a person who avoids sports and physical activities is putting it mildly but I sprained my ankle quite a lot as a kid and also used to have nose bleeds all the time. I've experiences the sensation that something has "popped out" before but it just pops back on so....thoughts?