The Hypermobility Syndrome Association is running an awareness week, so I thought I’d contribute.
To be hypermobile, at the core definition of the word, is to have a range of motion that exceeds ‘normal’ range. In clinical usage it describes having a wide range of joint movement. And more than that, it can refer to having a range of inherited connective tissue disorders which include Joint Hypermobility Syndrome, Ehlers Danlos Syndrome, and others such as Marfan’s Syndrome. In these latter cases it is never as simple as just ‘being that one kid in the class who can bend their thumb backwards’ – it comes combined with a range of symptoms that can interfere with daily life on a wide scale – from small troubles with minor dislocations and minor pain, to larger troubles with major dislocations and pain that impedes walking or driving ability, to gastric disorders or even spontaneous rupture of blood vessels, or spinal issues like scoliosis and Chiari Malformation. It’s a huge umbrella of various conditions that can be interconnected, and all of which affect each person with them differently.
I have EDS Hypermobility Type, which means I synthesise collagen badly and it primarily affects my joints and gastric system. My neck and back are bent out of shape, although you would never tell from the outside, and sometimes my head sinks into my neck enough to give me terrible headaches, particularly when lying down or using pillows / resting my neck on things. My blood vessels are extremely elastic (giving blood is difficult) and so is my stomach – it’s easy for me to get ulcers. The ligaments holding my eyes in place are too loose and it gives me double vision. But the main problem that affects daily functioning is the joint laxity and the daily dislocations. Every joint in my body does it, but particularly the feet, hips, shoulders and ribs. I used to use various walking aids – stick, wheelchair, crutches – but as my condition changes and adapts so do I – these days I mostly use shoe orthotics and stick to a specific exercise regimen to keep the muscles supporting the joints strong.
To get an idea of how different the disorder can be for different people, I have had friends with the disorder – one of whom was able to drive while I could not, but who struggled picking things up from the floor while I was fine with that, and another who got excruciating hip pain but was still able to wear high heels, which I cannot. And another still, whose main issue was preventing her blood vessels from rupturing from the smallest and most insignificant of tasks. Some of us can give birth easily, some cannot. It really depends on your personal makeup.
So that’s a general overview. I want to spend a bit of time looking at complications someone with hypermobility might encounter when having another medical issue or situation. In the past I’ve shattered bones easily, but luckily have not had to deal with plaster casts. It’s a relief, because the thought of dislocating while in a cast and being unable to set it back in myself while also having a broken bone scares me a little.
Therefore it’s topical that recently I elected to undergo surgery to remove breast tissue, which (among other reasons) I expect to lessen the number of rib and shoulder dislocations I currently experience per day. A quick note: this is not suitable for the majority of folk with EDS, because surgery is not a cure for the collagen problem, and it comes with many complications. However it was suitable for my particular case. For a non-EDS patient, undergoing this surgery forms about a few weeks of pain, the first three or so days being the most intense, and then mostly, things go fine with little complications other than potential infection.
For an EDS patient, the complications are somewhat different. My body fought off infection pretty well following the surgery, but having to not move much in the weeks following, combined with compression bandaging around the chest, meant that a lot of my joints fell out and I was unable to manoeuvre them back in properly. The shoulders and back have been the worst, but I’m actually quite happy to say that, barring the first three days of recovery, that’s where the most pain is actually coming from. It’s important to remember that hypermobile patients need to pay the most care and consideration to re-mobilisation techniques post-surgery. We cannot allow our ligaments or tendons (the connective tissue around the joints) to become too foreshortened, or we run the risk of joint issues complicating and lengthening the recovery period, and of muscle cramps and frozen nerves. But we also cannot move too much to relocate a dislocated joint if it runs the risk of reopening the surgery stitches, et cetera.
Because the surgery was largely to solve an EDS-related issue, I prepared well enough that I’m handling it okay, but it’s definitely one of those things, along with giving birth, or getting a plaster cast, that needs to be approached with extra attention for those with hypermobile conditions.
I would dearly love to write more on this, but I do need to take a break and heal up more – I have already spent too much time typing. Well, I hope I have educated you at least a small amount!
For more info do head on over to the Hypermobility Syndrome Association’s pages: http://hypermobility.org/hmsaware-week-is-here/