Injury in hypermobility syndromes (such as joint hypermobility syndrome, Marfan syndrome, Ehlers-Danlos syndrome [EDS] and stickler syndrome ) is a big area. This is a brief personal look at just a few aspects. Other people will have different approaches that work for them.
In someone with a hypermobility syndrome (HMS), who gets far more than the average number of injuries such as sprains, strains, dislocations and pulled muscles, what is an HMS related injury and what is a 'normal' injury?
My current answer would be:
If what happened carries a high likelihood of injury in an average person, I class it as a 'normal' injury. Sprains, strains, breaks - and even dislocations - from a fall are 'normal'. So are pulled muscles/ligaments from walking on rough ground or overdoing an activity. These 'normal' injuries will be affected by my HMS - a longer recovery time, and tweaks needed to rehab exercises, but aren’t really caused by it.
If, however, the activity I was doing would normally carry no risk of injury - and I managed to injure myself anyway, then I would class it as a 'HMS related'. Injuries that fall into this category include dislocating my wrist when attempting to cut a mushroom.
Then there is a grey area, where, for example, my injuries are more severe than would be expected in a non-bendy person.
Personally I categorise these as "'normal' injury – but probably affected by my HMS" where-ever possible. Because this works for me.
You see, I have to live with my HMS. I cannot afford to be afraid of it.
As a young adult with rapidly escalating injuries and symptoms, and a rapidly increasing level of disability, I was diagnosed as having an HMS -probably EDS hypermobility type. Initially I saw every injury and pain as ‘because of my EDS’ – my condition that was genetic and therefore always going to be with me, and was responsible for taking away my health and my independence. Everything that happened was further evidence of my EDS and the very fact that EDS is genetic meant I saw no end to the symptoms and no chance of improvement: because there is no cure for EDS.
Over time, however, I discovered that with the right input (the right meds, pain management tools, exercise, lifestyle, pacing, and more) things stopped spiraling out of control. Limitations I thought were forever turned out to be temporary, and limits that I thought meant I could never achieve turned out to mean I could achieve differently. That, in essence, my EDS reduced the ability of my soft tissues to cope with stressors/forces, and delayed my healing. But that didn’t automatically mean ever increasing injury and pain. By learning what my body could cope with, I could start to live more within those limits and begin to strengthen without injury – or at least, with fewer injuries, slowly increasing my body’s ability to cope and expanding those limits. I also started to have more sensible recovery expectations for injuries and more effective recovery strategies.
So now, instead of seeing every injury as “because of EDS” I think "hmm, I need to strengthen those muscles a bit before doing that again" or "I won’t try that again when I’m this exhausted" or "until I'm stronger, I really ought to support the joint for that activity"or "I overdid it a bit there!" - each of these injuries comes with a little piece of my life's jigsaw puzzle that will help me make better decisions in the future. And carries with it the hope that I might be able to avoid a repeat. As time has gone by I have been able to build strength and re-try things that previously caused injury – and found that I can now cope with them!
Yes, there are many things I suspect I will never be able to do...but my views on that change over time. 6 years ago I was sure I’d never be able to run a business or dance – my levels of injury and pain were just too high. But that is exactly what I am doing now. True, I do both differently, but I still do them.
I have also learnt not to blame myself for my injuries (unless I did something I knew would cause injury – and then I’m only repentant if it wasn’t worth it). I know that my EDS makes it easier for me to get injured, and my ease of injury seems to vary depending on strength of muscles and ligaments, fatigue levels, stress, nutrition, hormones, level of symptoms from postural orthostatic tachycardia syndrome, previous injuies, illness and more (this isn't necessarily scientifically proven fact, just my observation of myself). Some of these factors can fluctuate massively. No way will I always get things right, but I’m loads better at getting it right than I was, so I count that as a win. And when I do get an injury, well, it can’t be helped…and that’s a bit more that I know about my current limits.
If I am unfortunate enough to experience a major injury, illness or life change that interferes with my HMS management, I am under no illusions about how much this could change my physical state and abilities. Should that happen, I hope I will be able to find the strength to continue this process of learning what my body can cope with at that point in time - and how to give myself the best chance of maintaining or improving that level.
So overall I view my EDS as reducing my connective tissues default level of resilience rather than as the cause of all my injuries. This means I have to be more aware of what I do and how my body responds, and keep as strong and healthy as I can to maximise my resilience.
It helps me respect my hypermobility, but not to be afraid of it.
It works for me.
(Note: for more information on hypermobility syndromes see hypermobility.org - the website of the Hypermobility Syndromes Association, which holds the NHS Information Standards quality mark.)