A year into being diagnosed I was referred to a local physio therapist. Knowing the scale of my pain on a daily basis for the years I had be un diagnosed, I felt like I knew my limits and was sceptical going into this, the word exercise frankly scared me. The only other times I had heard of physio was from school education. I am quite in tune with my body's pain threshold and knowing that my illness involves weak/no muscle tone and unstable joints leading to dislocations/subluxations aswell as fatigue I was quite put off by the prospect of it all.
My physio therapist was very kind and supportive but had never heard of Ehlers Danlos Syndrome. After the first session she took it upon herself to research as much as she could into EDS and whether or not she would be able to help me. She was shocked at just how much this effected every part of my body. Like some, I don't only have the joints and muscle pain but also have extensive internal pain with my organs, especially effecting my stomach, heart, lungs and bowel.
Because she was so unaware of this illness we spent several weeks and sessions just talking for her to gain some sort of understanding. She openly admitted she was worried she would cause further damage to my muscles if she chose the wrong exercises for me to try. It would also be difficult going from doing absolutely nothing to having hour sessions weekly, so we tried to base a plan of where we could start.
She started with a strength test, which was me laying flat trying with all of my might to squash my lower back and stomach muscles into her flat palm. She said I had absolutely no muscle capacity because she couldn't feel any pressure, even though I was really trying. She did other tests on my legs and feet and again told me that my body wasn't responding how she had thought a 'normal body' should. She suggested I try a home Tens Machine. She explained how women can sometimes find this machine very helpful during contractions in labour. Knowing this is a painful experience for women, I thought it may possibly be the answer for a bit of pain relief. However within the first 2 minutes of me trying my machine on the lowest setting, the nerve pain in my body was so immense, as if I was being strongly shocked every few seconds. My nerve pain had increased and didn't settle down until the end of the day.So then she suggested trying Acupuncture. I am a huge needle phobic person but was going to try anything that could help my pain.
Anyone with EDS will know how sensitive and fragile our skin can be. Mine (often translucent looking) sometimes just splits open for no reason. I find it difficult to rub in body creams or even hug people because my skin has a burning/sore sensation. My legs tend to go a red/purple/blue colour throughout the day from autonomic changes to my body. I also can be half hot half cold thanks to strange body temperatures. My physio said that a tiny percentage of her patients (10%) that tried these techniques didn't have positive results and she thought that by the characteristics of EDS that I would probably fall into that 10%, which I did. GO ME! Not!
We finally got on to the exercise part of my physio after a few weeks and she didn't want to start too over the top. I had got myself an exercise ball for home and been following some small routines she had taught me trying to strengthen my core for a few weeks previous. So we started the session with 12 minutes of exercise. 3 minutes per exercise machine. A treadmill, a cross trainer, a korebalance, and some step ups. This small amount of exercise put me in bed unable to lift my head off my pillow for 6 days. I could not believe how my body was reacting, how could such little exercise cause so much pain. Mid way through the week she wanted to check how my body had reacted and couldn't believe I had been in bed for so long. She was really honest in the fact that she didn't know enough about my illness and didn't want to risk causing me anymore pain than necessary. She wanted me to work with somebody who knew exactly what to do, but continued to keep in touch over her findings on EDS and so with that I was discharged.