Question: Hi, I hope you can help me. I have had joint pain since a small child, doctors didn't believe me. rheumatology in the 90s didnt know what it was and said lets just call it juvenile chronic arthritis.
Muscle pain and fatigue worsened and I was diagnosed with ME/CFS in 2004. Fibromyalgia in 2016.
However, I have hypermobile joints that are getting more painful. Knee and shoulder crepitus, constant neck and back pain. Some stretchy skin. Wide papery scars, Raynauds in only my knees. Translucent skin that shows deep veins in my face, neck , front of shoulder and neck. A mass of bruise like looking veins on my ankle. POTS type symptoms (waiting for cardiac referral). Xray in 2011 showed degenerating disc with anterior osteophytosis. I can do the reverse namaskar, flying bird, turn feet outwards, bend fingers, toes and thunbs back. Swan neck deformity in left fingers. I can curl my fingers over each other easily. Even though I've been basically housebound for years I can lift my foot up to my face and put my hands almost flat on the floor while standing. I'm pretty flat footed with hammertoes since childhood. I get pain where my clavicle and ribs join the sternum. I'm constantly wrenching my mid back/shoulder bade area just doing simple movements and the pain lasts for days. Sometimes joints get stuck before clunking into place. My knee twists and clunks, grates, creaks, sometimes gives out completely. I'm already on muscle relaxants but they are constantly tense, knotted and sore. I get neuropathy, restless legs, myoclonus (no tests done for myoclonus).Too many symptoms to list.
I know some symptoms can be explained by CFS and Fibromyalgia but I'm wondering if I have joint hypermobility syndrome or EDS. It feels like it would explain a lot. My doctor didnt examine me and just said he's on the fence, that he could refer me but rheumatology will probably be on the fence too and it doesn't matter what it's called, just treat symptoms as they come up. What it's called matters to me, if I'm going to get support. I just want to know whats going on, and if EDS is a possibility could it explain everything? As a child very few doctors believed me because there was no inflamation. I'm afraid Doctors might think me a hypochondriac as I have a history of depression. If you managed to read all that, thanks!

Hi, I use heat daily, so I know that helps. And painkillers of course. Unfortunately moderate exercise is out of the question, as I said, I am pretty housebound. When I did some gentle physio the pain got increasingly worse to the point of aggravating symptoms for months. I lasted less than a week just doing a little rocking on a gym ball. Hydrotherapy is easier but still out of the question right now due to fatigue and the payback. I rely on carers and my energy baseline is 10 %. When I stand up my heart rate can go up to 170 on a bad day. I often need help just to get dressed due to severity of fatigue.
Can you tell me how I would be assessed for hypermobility syndrome or EDS? What is the difference between them? Can they trigger M.E and Fibromyalgia?

Thank you so much, that is very helpful to know. I will try to be more assertive with my health care and push for some tests. Thank you again.