Careful Living with Ehlers-Danlos Syndrome

This is a thoughtful description of the things you need to consider while managing your life with Ehlers-Danlos Syndrome.

By  | Yahoo Contributor Network

“Hypermobility Syndrome (HMS or Ehlers Danlos Syndrome- Hypermobility Type) is a condition that affects 10-20% of the population. Some people who fit the diagnostic criteria for HMS will have no apparent negative effects as a result, for others it is a debilitating condition that can seriously impair their mobility and manifest with symptoms as diverse as joint dislocations, fatigue and heart murmurs.

I am somewhere in the middle of this scale. I have chronic joint pain, and frequent joint subluxations (partial dislocations). Without appropriate care, joints become unstable, I fall frequently causing damage to my joint surfaces and ligaments. Having lived with this condition for 20 years, I have found ways to manage it, and am able to maintain good mobility within my own boundaries – a far better outcome than my original prognosis. Here are some of the tips that have helped me manage my Hypermobility Syndrome:

Use it or lose it – keep active.

I know I am not going to be running any marathons, but that does not mean I have to submit to the sofa completely. I choose ways to keep active that within my capabilities.

Can you swim? Maybe breaststroke is too much for your hips, so how about crawl? How about some gentle yoga? Learning to maintain your alignment whilst gently building strength in your posture is really beneficial. Be aware that I am not advocating stretching for flexibility here, but strong yoga postures to stabilise the joints. Can’t stand? How about chair yoga ?

Even if all you can do today is sit up in bed for a bit, challenging your body in a sympathetic manner will not only help you maintain your physical ability, but will also make you feel good.

Make your plans as flexible as you are.

Some days I wake up feeling spritely and good, some days I wake up creaky, aching and tired. Sometimes I get better as the day progresses, sometimes worse. I have to be prepared to adjust my plans accordingly because I have learned that there is no point putting more strain on myself unnecessarily.

Hormonal changes and pregnancy can seriously impact the state of your ligaments, so always be mindful, and non-judgmental, of your capabilities at this moment.

Take advantage of the good days

In line with the previous point, if I find myself more capable than expected, I use that. There is no point spending the day sitting doing my accounts, if it is a lovely day out and I’m feeling good. So I will save that work for a day when I am not up to walking, and take the kids somewhere fun.

Respect your capabilities

Equally it is important not to push too hard on a good day. I have to respect my limits lest I hit the “HMS Hangover”. A long walk on rough country ground might be achievable, but I have to be aware of the trade off that may leave me unable to walk without aids and on painkillers for a week.

If I am injured, I take extra care. A joint that is sprained, or suffered a recent subluxation, needs to be supported and rested appropriately.

It’s not just your joints that need taking care of

Hypermobility is associated with an array of symptoms affecting the body in different ways. When I started realising that these apparently disparate health issues were connected, I found I was able to take better care of myself.

Stress can be a surprising contributing factor to my well being. A lot of HMS sufferers have IBS, stress aggravates IBS symptoms. There are also links between HMS and mental health issues such as depression and anxiety. It’s hard to be sure how much of this is due to the psychological impact of living with the condition, and how much is physiological (muscular tension in some areas can lead to an increased output of stress hormones). Regardless, being mindful of my stress levels, and developing coping mechanisms has been extremely helpful.

Don’t be afraid to ask for help

I sometimes forget that the people around me may not be aware of my condition. Even those close to me might not guess that I am having a particularly tough day. Perhaps I could lift that heavy box on my own, but if I am likely to injure myself doing so, it might be better to ask someone for help. It is a very rare occasion where a reasonable request is refused, or even questioned. It feels good to help.

Sometimes help is not physical assistance. Sometimes asking for help takes the form of turning to your partner or work colleague and saying “I’m in a bit of pain today, so please forgive me if I’m not the usual little ray of sunshine.”

 Understanding your limitations and pacing yourself is very important when struggling with Ehlers-Danlos Syndrome. 

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