Friday, May 6, 2016

The need for constant rehabilitation - ongoing exercise regimes!

One of the biggest problems with Ehlers-Danlos Syndrome - Hypermobility Type (EDS-HT)/ Joint Hypermobility Syndrome (JHS) is that the management needs to be continuous. It is a life-long condition, meaning that the ligamentous laxity remains (although declines with age), and it is a heritable disorder of connective tissue meaning that the collagens continue to reproduce in a 'faulty' way. This means that the risk of injury is never far away because of often widespread joint instability, pain caused by overworking superficial muscles, and frequently a lack of firing of the deep core stability muscular system. The cycle of a manual therapist (usually a physiotherapist) releasing off the tight superficial muscles is needed in order to relieve pain, whilst the patient needs to work to strengthen (in particular) the deep core muscular system to help with joint stabilization and to maintain the range of movement that is natural in a hypermobile body. This loss of the full range of movement in a normally hypermobile body is something that undoubtedly leads to further pain, and many hypermobile people complain of 'feeling stiff' as a result. Whilst the over-worked muscles may receive manual therapeutic attention, it is the job of the patient to strengthen and this whole process is cyclical and seemingly never-ending.

Of late I have experienced such arm restrictions that I was neither able to adduct my arms (lifting sideways), lifting my arms forward, and hardly any movement on extending my arms backwards. There was simply no strength in my upper body to support my arms let alone allow for any, let alone my usual 'hypermobile' range of movement. There was also absolutely no strength to the extent that I couldn't even hold a newspaper. Tasks like drying my hair had become virtually impossible, and my desire to garden all gone out of the window because I could only manage to trowel out one weed!

I thought I might need to contact my (old) physiotherapist because she was so skilled at helping me, but as this was not possible for various reasons, I had to look at my blog and my books and see if I could find any answers in the form of exercise management. Interestingly Bowen Therapy had helped with my spinal extension, but now I needed to do a whole batch of exercises, and I knew this, in order to give myself any hope of gaining any upper body strength and stability and so I could also improve my arm range of movement again in all planes. Luckily I came across about 8 exercises, and even after a week my range of movement has improved, and already tasks like drying my hair have become possible again. I have also been doing remedial work on my neck, and since everything is joined onto another piece in the body, therefore no part can really be separated, this is important as the neck work will also support the shoulder/upper body work. In addition I also have to continue doing gluteal strengthening work at least 2-3 times in the week. It is a big ask. I also aim to walk for 30-60 minutes a day and then try to fit in some ballet.

So I have written this to show just how dedicated the EDS-HT/JHS patient has to be, and how commitment from the patient is so necessary in order to manage the condition. I will of course check in for some more treatment - be it Bowen, Osteopathy or Physiotherapy, but the hard work has to come from me. On that note,  I must sign off and get started on my 20-30 minute program!