I’m not a doctor and I am not writing this as medical advice. It is just my experience of Ehlers-Danlos Syndrome. It’s a strange illness and everyone has such a different experience of it – I thought the internet could use mine.
Ehlers-Danlos Syndrome, hypermobility type (EDSH) isn’t currently distinguishable from Joint Hypermobility Syndrome (JHS), both illnesses are due to faulty collagen and have exactly the same symptoms. From my experience, a rheumatologist will diagnose your condition as JHS based on their main interest lying in the joints and send you to a physiotherapist who will call it EDSH. A geneticist will similarly diagnose the same person with EDSH as it is a genetic condition. At least, for now, the two conditions are widely considered to be the same thing.
For me, EDSH is a combination of widespread joint, muscle and tendon pain with the occasional subluxation. The worst areas for my pain are my fingers, wrists, ankles, knees, hips and lumbar spine/sacroiliac. More recently my shoulders have become more problematic and like to stay out of place for a few hours before they pop back in. I suffer from a strange, knotted type abdominal pain and serious discomfort during and after sex – making it a sort of no-go pursuit, currently. I get the associated IBS/acid reflux that tends to come with EDSH due to the organs also being stretchy. My hormones have gone completely freestyle and I have no menstrual cycle to make head nor tail of – this is an issue as laxity of joints seems to be influenced by hormones levels, specifically progesterone. This is why you’ll find far more women having a nightmare with EDSH, though men do get it too.
When I say I have problems with my sacroiliac joint (it attaches your spine to your pelvis), I mean that mine is a little bastard. Sitting or standing for ten minutes feels like a 12 hour flight, having been unable to stretch once. It is impossible to stretch/crunch it to relieve this feeling. Lying flat on my back on the floor used to help but doesn’t always relieve the discomfort now.
I often get weird nerve issues such as tingling and numbness, especially in my hands and feet. I can only assume that this is because nerves are being upset somewhere along their route. It’s not sore, but having constant pins and needles is annoying when you’re already sore and exhausted. Walking is fun when your foot is numb.
I also suffer from debilitating fatigue, dizziness, palpitations, cold sweats, swelling of my hands and feet, flat feet, poor proprioception, issues with my ears, nose and throat, sinus issues, allergies, drug allergies… The List goes on. I’m waiting to see an immunologist to look into the allergies side of things. I suspect is might be Mast Cell Activation Disorder which is more common in people with EDS.
When I say that I have drug allergies, I mean that I can only take paracetamol. I have tried all the drugs only to find that I’m allergic, they do nothing (morphine) or they actually make my pain worse. An example of a drug that made my pain worse is diazepam. It turns out that people with EDSH need to have tense/strong muscles. My muscles are working ten times harder than a healthy person because they need to keep my loosey goosey joints in check. Taking muscle relaxants felt like my body was held together by jelly and was going to fall to pieces and was extremely painful – not that my GP believed me, luckily my rheumatologist did.
Lastly, like most people suffering from chronic illness and pain, I get depressed. I’ve been signed off work since November 2015 (following 6 months of regular absence before that) and spend days and weeks in the house by myself all day, every day. It’s lonely. Sitting to watch TV for any length of time hurts my back, drawing/colouring in cripples my hands, I struggle with little things like filling the kettle – never mind stacking the dishwasher or hanging up the washing. I’ve had to let go of my hobbies like rock climbing and hill walking and all of the socialising that came with them. EDSH is a lonely illness. I’m just lucky to have a few friends and family who stick around, no matter how boring or unreliable I get. I really lucked out when I met my partner, J. He really does have the patience of a saint and even when he can’t understand something, he is still kind. I need him to help me with everything and he does, no questions asked. I have no idea how I’d cope without him.
For more information, these sites are pretty good:
Ren x
broken down body 