Navigating physiotherapy when you have Ehlers-Danlos Syndrome or and other hypermobility disorders can be difficult.
EDS is basically a hereditary connective tissue disorder. There are thirteen types, hypermobile EDS being one of them (this is the type I have with a few traits of vascular). EDS is a rare condition and it affects everyone differently in terms of severity and symptoms. This includes what secondary conditions that person may develop as a result of their EDS. Connective tissue supports organs and holds parts of your body in place. Connective tissue is made of two proteins: collagen and elastin. In EDS it affects the production of collagen in the body.
The problems my EDS causes me when it comes to physiotherapy is that I have to be mindful and careful to avoid causing a joint to sublux (partially dislocating) or to fully dislocate.
There’s an EDS joke ‘my joints go out more than I do!’
The other problem my EDS causes, which is secondary to my EDS is dysautonomia which is problems with my body’s autonomic functions. Anything from temperature control to heart rate. One dysautonomia condition I have is POTS (Postural Orthostatic Tachycardia Syndrome) - about POTS. So because of my POTS and dysautonomia my heart rate can get abnormally high, I can also easily get dizzy and lightheaded brought on by the exertion of doing my physio. Even though it’s not strenuous exercise it is for me especially in combination with my M.E.
In the past I’ve had specific EDS physiotherapy other times I’ve just have physio that is rhumatology, for chronic pain or just generic. (Yes I’ve had lots of physio over my lifetime!)
Sometimes it can be helpful to speak with your physiotherapist about EDS so they understand it better so they can know best how to treat you especially if they’ve had no experience of EDS before.
Some of the things I do to mange my EDS when doing my physio is:
- Doing my physio laid down either in bed or on a yoga mat.
- I’m unable to do strenuous exercise so doing gentle movements work really well for my EDS. I do this guided by a physiotherapist who has given me exercises she knows I’m able to do.
- Listening to my body is key, if I feel I’m going too far I stop before I sublux or dislocate.
- I find doing a few movements two or three times a day is better than one big session.
- Keeping an eye on my heart rate is really important. If I feel my heart rate getting too high or I feel dizzy I’ll stop. I might check it just to be safe especially if I’m also feeling dizzy. If needed I’ll lay down with my legs elevated until I feel safe enough to sit up and get into my wheelchair. This is one reason why doing my physio in bed or on the floor is safer.
- I’d also ensure I have my phone with me and I’m wearing my CareLink just in case I become unwell or need medical help.
- Having water with me I find is helpful too.
- I also do my physio at times of day when my EDS symptoms are most stable.
I find it important to keep up doing my physio every day even on my not-so-great days. On those days I’ll just do a couple of reps of a couple of really gentle movements. Then on my better days I’ll aim to do more of what I’m able to do. I find keeping it up everyday helps to keep my body moving and keep my body in good condition. It also helps keep up the progress I’m making too.
Other things physiotherapists have done for me and my EDS in the past is have been to fit me with orthotics to go in my shoes. My EDS causes me to be very flat footed, a common problem for people with EDS. My shoe orthotics help correct this and in turn I’ve found they really relieve my knee and hip pain.
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| My CMC thumb brace |
I’ve also been advised on other splints particularly ring splints but I haven’t gotten around to measuring my fingers and purchasing them. The physio who advised me to get them couldn’t get me referred to be fitted for ring splints on the NHS, she just advised me to get them from somewhere like Etsy and named a few shops on Etsy and other online shops to me. I haven’t gotten round to buying them yet mostly due to having to get the precious measurements of my fingers for ordering them and trying to find the lowest cost but good quality one. Silver ring splints are better but quite expensive especially when I need to buy a few even though I know they’ll benefit me.
Also with EDS and splints and braces the question is when to splint and brace and when not to. I’ve had some orthotist’s advice me to wear my brace all the time like when he fitted my knee brace. The problem is though is when you brace the joint becomes weaker as it’s being supported. Some professionals tell me just to splint and brace when needed. Generally for me there are some braces I usually wear all the time like my CMC thumb braces because of how lax my thumb joint is and how often those joints sublux and dislocate. Probably because I use my hands so much like writing and pushing my chair. Other splints and braces I’ll just wear when needed like after a dislocation, or if a joint feels weak or painful and needs some additional support. I’ll also put a splint or brace on if I’m going to be doing a particular task where I know the joint needs to be supported to help avoid injury like a subluxation or dislocation or to help reduce pain and strain.
Some braces and splits over the I've have to replace myself as they’ve worn out or I just can’t get on the NHS. On these occasions if the option is there I like to opt for something a bit jazzier than NHS greyige. (Most NHS things are grey or beige.) In my view if you have to wear it you may as well let it express who you are just like I do with my mobility aids.
Blue is better than beige!
I also use mobility aids partly because of my EDS so physiotherapist’s have ensured that they fit me correctly especially as I’ve always bought my own funkier looking walking stick and crutches than the boring grey NHS ones. It was actually one of my physios who suggested I switch from using a walking stick to a crutch for more stability and support. From there a physio moved me onto walking with two crutches as my mobility declined. My latest physio could see me in my wheelchair and how much that benefitted me. So physiotherapist’s have been really key for me when it comes to my use of mobility aids over the years.
