Ehlers-Danlos Syndrome (EDS) – a personal experience

Huge thanks to Kayleigh (Follow Kayleigh on twitter @KsEDSchallenge) for sharing her experience of Ehlers-Danlos Syndrome (EDS). The way that clinicians and the public truly understand conditions is through the personal stories that are described first hand. The narrative is key.

I was diagnosed with EDS in late 2013 (aged 25), having displayed symptoms my whole life – more noticeably from the age of 19 when my right knee became unstable and I began to notice symptoms such as mennorhagia, recurrent urinary infections and shortness of breath. Then from the age of around 23 when seemingly overnight lots of my symptoms became pronounced, leading to an eventual diagnosis.

I have seen 3 different physiotherapists during that 4 year period, and every one of them commented on my flexibility and pointed out things such as my tight hamstrings, stiff upper back and neck muscles, which I now understand are the result of my muscles trying desperately to stabilise my joints.

It’s reassuring that the physiotherapists picked up on this hypermobility, but at this stage it would have been so helpful if they had suggested even in passing that I might want to visit my GP if I had ever had any other symptoms such as the ones I had experienced, and had visited GPs for, but which had never been linked to each other. This could have lead to EDS being diagnosed 6 years before it was, and 3 years before I suddenly worsened. I would encourage physiotherapists to suggest this where they feel it could be appropriate. I have read several statistics suggesting that anywhere from 70 – 80% of people with EDS (who do not know of any family predisposition from a young age) do not get diagnosed until they are in their mid to late 20s, by which point little can be done to reverse the damage already sustained.

Now that I have been diagnosed, my physiotherapist plays a central part in the ongoing management of my condition as I choose to manage my condition without the use of NSAIDs, muscle relaxants or analgesics as much as possible.

There are several reasons that I choose to engage more intensely in physical therapies than drug based relief. The overriding reason is the damage drugs will do to my organs. I already suffer with kidney infections, GERD, costochondritis and digestive issues. I’m quite sure none of these will be improved by long term usage.

I also feel that I cope very well with my day to day pain levels. Before I was even aware that I had EDS, necessity had forced me to develop coping strategies for day to day life. I didn’t even realise until I was diagnosed that the majority of things I do, I do in some adapted way to mitigate against pain. If I were to use painkillers for a prolonged period, and then stop, I’m sure the ‘background’ pain I don’t even notice would become debilitatingly noticeable.

An equally important reason that I choose to engage heavily in physical based therapies is prevention. We all have to accept that there is no cure for EDS. But I fully intend to work until I reach retirement age, to have an active lifestyle and to have a family. To give myself the best possible chance of enjoying all of these things, I know I must strengthen my body and learn safe habits.

I have realistic expectations of my physiotherapist and what they will be able to achieve. But physiotherapists do not always have realistic expectations of me. I am not, for example, going to perform a single leg squat.

If you ask me to perform that quad stretch where you hold your foot against your backside.. remember that you need to consider – is my straight knee hyperextended, is the ankle I am holding in my hand bent at an unusual angle, is the elbow of the arm holding that foot straight and hyperextended, am I touching the wall with my fingertips for balance and bending the joints backwards… you can probably also assume that my elbow and wrist subluxed with the weight of my foot/leg.

What may seem like a simple stretch, for me is a whole host of things that could be going wrong. My concept of ‘normal’ is non existent. You will need to point these little possible dangers out to me, or I will be going home and doing damage to myself without realising it.

By pointing those things out to me, and by obviously knowing your stuff when it comes to EDS, you will gain my trust.

I would say the key to successful physiotherapy with EDS is to work with your patient to improve proprioception. I do not receive correct messages back from my body to my brain, so if you tell me to lay with my spine perfectly aligned I will probably think that I am doing it when really one hip has rolled forward or my shoulder has rolled backward. I will often perform exercises incorrectly once at home as a result.

I am currently working with a therapist to improve my proprioception in a number of ways. One of those ways is that I am learning to write with my left hand (being right handed), this will open new neural pathways and should help with my overall balance and co-ordination. It will also serve the dual purpose of allowing me to swap between hands when taking notes and using a computer mouse at work, to relieve the stress on my right arm. These kinds of techniques are great as they show measurable progress, where often with physiotherapy exercises I wonder if I am even doing anything to my body – I can’t feel the stretch in the stretches, so I just have to take it on faith that they are doing any good!

What I really appreciate is a physiotherapist who will go the extra mile. There are several things you can do to show that you understand EDS, that you are taking us seriously, and that you care. These are three things that we have come to expect not to receive from people, which we find a source of frustration and upset. We have been labelled as clumsy, melodramatic, hypochondriacs our whole lives. You may be trying to reassure us by downplaying an issue, but we will just think you are doing the same thing  our families, friends and doctors have in the past and will become defensive and distrustful.

Little things mean a lot. EDS sufferers are ALWAYS cold – so ask if the temperature is OK for us if we are covered in goosebumps. A lot of us have PoTS so don’t ask us to ‘jump’ off the table, advise us to get up slowly and be nearby ready to catch us if we go dizzy or a knee collapses as we stand. Learn about EDS and think about what you can do to demonstrate that you are not ‘just another medical professional’ and we are not ‘just another syndrome’.

These things I hope will help to build what is the most crucial part of managing any chronic condition – a positive, trusting relationship between practitioner and patient. That is all any of us, on both sides of the table, are asking for!

If you would like to share your experience, please contact me [email protected]

Ehlers-Danlos Support UK

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