Living with Ehlers Danlos or any of the other hypermobility syndromes does mean you are going to get injuries at some point.  That’s not me being negative, it’s the truth. Living with these disorders is risky! Simply rolling over in bed or putting on socks can lead to ridiculous injuries. I do my best to be careful and follow joint protection principles but I still subluxate, dislocate, sprain and strain things on an almost daily basis.  Topics I’m asked about pretty frequently are “When do I go to A&E” or “How do I know to see a doctor”. There are no simple-one-size-fits-all answers.

Please remember this information is mainly gathered from my own experience, though it is informed by my OT training. Please consult your Dr before making any big lifestyle changes.

I wasn’t always the walking accident you see today, in my youth I was pretty close to being ‘normal’ at some points…well, maybe not that close but much less broken than I am now!

In my case, my EDS didn’t start causing massive problems until I was about 18, by 18 I’d had a lot of years of managing sports injuries and my mum (very conveniently) had a healthcare background as a radiographer so we’d been able to deal with a lot f my mis-haps at home. I was (and still am) well versed in basic first aid for injuries, I could splint a broken finger or close a wound with steri-strips quite easily, we always had ice and ibuprofen on hand. This served me well later down the road when daily injuries became the ‘norm’. Despite my various daily joint dislocations I very rarely end up in A&E. This is the case for a lot people with hypermobility syndromes  who have been living with serious joint instability for a number of years. Usually if a joint comes out easily it goes back easily. For many of us, its second nature to simply pull, push or wiggle the problem joint until it behaves but we didn’t all develop this skill over-night.

Throughout life I would encourage you to remember that the person who knows your body best is YOU.

It’s sometimes easy to know when fixing your body is beyond your skills, a broken leg is quite obviously a matter for the hospital and a mild headache is something you deal with at home… with long-term conditions the line gets a bit fuzzier. We live in shades of grey not the usual black and white of home or hospital.

The deciding factor usually comes down to a series of questions for me.

Have I dealt with this before? – My personal policy is that all new symptoms should be run past a doctor. It’s all too easy to blame every scrape, sniffle, twinge or hurt on a condition like EDS but sometimes there’s also something else going on. Just because another EDSer had a similar thing it doesn’t mean your thing is the same.  If the new symptom is manageable, or you’re 99% sure you know the reason then you might not need a visit to A&E but I would just phone your GP in the morning.

I know it can be frustrating spending time at the GP being told it’s “Just another symptom of your EDS” but surely that’s better than ignoring something that turns out to be serious? If any GP’s are reading this then I urge you to think of this from the patients point of view – we aren’t medically trained, we don’t know what’s wrong, we don’t want to waste your (or our own) time so please be understanding.

Next question

Can I still function? – If this [accident/injury/illness/symptom] is something I’ve had before but it is worse or affecting my ability to look after myself should I see a Dr? I’ll give you an example, I have (in the past, on numerous occasions) subluxed bits of my spine. The result is hideous pain, intermittent numbness or even paralysis in my lower legs until said piece of spine goes back where it belongs. I know what this is, it isn’t a new symptom but it is BAD. My ability to function was drastically and suddenly reduced so I sought help in the form of an on-call GP. Unfortunately for me the on-call GP didn’t know much about EDS so wasn’t much help BUT talking through my options with the GP and double checking what I already knew about the situation helped me to calm down and think about it. Eventually we dealt with everything and after a day or so I was back to ‘normal’.

Just because your condition has the potential to cause a symptom (joint dislocations) doesn’t mean you are expected to deal with it alone the first time it happens. Even with EDS, the first time you dislocate a shoulder is horrible and you’re perfectly entitled to medical help.

It is also perfectly acceptable to ask for help (just in case) and then manage on your own. In the past I have called out ambulances but after a bit of help I’ve stayed home rather than going to hospital. (Some things unfortunately get you an automatic ride to hospital but it’s worth negotiating with paramedics about other things).

Next up

Am I at further risk?  – The answer to this question is sometimes dependent on your environment. At home, with my ice packs, crutches and family a dislocated ankle isn’t too hard to deal with. Alone, on the side of a mountain, in freezing temperatures is another matter. Many people with long-term conditions cope much better in familiar environments with familiar people, if your out and alone it’s often wise to seek medical help.

It’s also wise to think about the bigger picture here too. Some people with PoTS also have syncope. If you pass out on a regular basis then you might not be too worried about fainting but if you pass-out and hit your head then you’re not just thinking about fainting any more. It’s a head injury. Your head contains your brain, better safe than sorry!

Finally

How long has this been going on? – I know what’s wrong, I’ve dealt with it before and I know I’m not at risk BUT it’s been going on for longer than usual. I might just phone the GP. I recent had a massive fatigue flare-up, I have dealt with fatigue before and although it’s unpleasant it isn’t particularly risky so I let it go on for a few weeks before I spoke to a GP. Just to be sure we did some blood tests and I got the all-clear. Once I knew there was nothing sinister going on it was just a case of resting and pacing until my energy came back.

Long term flare-ups are often easier do deal with if you KNOW there is no other cause. Once I got my test results back my anxiety levels dropped and I got on with life, just at a slower pace.

Living well with long-term conditions takes practice, after a few years of dealing with the same issues they become less scary and easier to manage.  Learning to use techniques like pacing and pain management can also help massively.

Trust your instincts, if you know something is wrong then get it checked out. Long term conditions can make life challenging at times and we all cope with these ‘challenges’ differently, asking for help doesn’t make you weak it makes you wise.

Look after yourselves, I hope this has been useful and as always questions and comments are welcome

JBOT