My Experience With Physio - Part 2

So after quite a few months of my doctor trying to find a 'local' physio therapist, I had to travel around in hope of finding somebody who understood how EDS effects the body in a physical and exercise aspect. Turns out locally there is not much support to offer with young adolescent chronic pain and people who fully understand the illness. I was travelling at least 1 and a half hours away to Hastings and I wouldn't call that local, even though the PCT funding panel would. When we got there they said there wasn't even a programme for adolescents in the first place and I would be with patients over 50 years old. They felt this wouldn't help me being a teenager with people I couldn't relate too.

After a good year my medical team in London agreed that the best place for me to be transferred was to a Pain Management Hospital in Bath for a 2 week individual programme (I hope one day to be able to be brave enough to do a post on how I truly felt about my experience with the pain management programme but not for a while as it is still quite difficult for me to get my head around).

I had done a limited amount of exercise from my last experience, just some walking and an occasional swim while on a family holiday so I guess this was restarting the process again. I find it hard to try and force yourself to exercise everyday when you wake up in the morning and your body already feels like you have been hit by a bus or run a marathon.
I was worried that the new physio therapists would be exactly the same and try and push excersie upon me without understanding my story. I was absolutely dreading and frightened of my sessions. For some reason the word physio to me creates a big list of other words like vigorous, challenging, workout, intense, scary and pain. "I know my limits, they don't know what the pain feels like, how am I going to get through this" is what I kept worryingly repeating over in my head. But being the people pleaser that I am, I said I was willing try anything they wanted, not wanting to let them down and seem lazy yet knowing that I would just end up in bed from all of this. Fortunately, for most part of the year they work with young people with EDS and other chronic illnesses and probably saw that comment coming a mile off. They told me that I needed to be honest and that it wasn't about pushing myself but more to pace myself, with not only physio but every aspect of coping with a day of pain. They were an extremely encouraging team and just wanted to help me. So they took a completely different approach than what I had previously encountered;

Before we got into any exercise we started with a talking session of what signs I had to look for in my body and what sensations I was feeling while completing an exercise. I am very in tune with my body but they wanted me to look abit deeper.  Together we came up with a list split into two categories;

How our body reacts to the exercise (the signs to look for to know your body is working hard):

1. Heart rate goes up 2. Become breathless 3. Get a Stitch 4. Extra body pain 5. Sweat 6. Body starts throbbing 7. Body just gives up 8. Shaking

How our quality of the exercise is affected:

1. Moves become sluggish 2. Posture becomes bad 3. Lose symmetry  4. Speed goes up/Slows down    5. Loss of control

They gave me a list of what I would need to complete everyday. Looking at the different exercises on my first session I thought, "Whaaaat!! My body wont let me do that I can barely stand up straight with my pain". But they assured me to keep it mind it wasn't what was expected of me. It was a case of what I was able to do and working at my own pace, not to please or keep up with anyone else.
The exercises were as followed:

 Stand ups, side bends, arm circles, step ups, squats, arm raises, leg balance, walking, forward reach, leg raises, knee rolls, press ups, bridiging, sit ups.

At the end of each session I had to set a minimum target goal next to each exercise on what I felt I would maybe be able to complete the following day. Again almost straight away my mind jumped into what I thought they were expecting me to write (did they want me to write a large quantity) and what I actually felt able to do while in pain (not much). A never ending people pleasing mind battle you could say.

I have always said when it comes to exercise, it feels like my body just gives up but my mind wants to go on and I get very annoyed at myself. Some of the exercises I found very challenging and some I didn't feel like anything was happening to my body at all and they were pointless. They told me I was allowed to adapt the scheme and take out the ones I didn't find challenging enough and instead work on the others. I told them that I wanted to start relating the exercises to something that I found enjoyable yet not a hardship. They put some faith back into being able to do gentle exercise without over doing it and working to my own needs. The amount I was able to do per exercise slowly increased by a couple more over the 2 week period.

 I wont lie and say I do this everyday because some days I cant even lift my arms up and just have to sleep, and if I have been out walking then I may pass on doing other exercises because I am wrecked and need to rest and recuperate from a day out. 

I think this kind of covers my story with physio. I think the whole point of doing these exercises is so it helps the little quality of life we have when we are doing something active outside e.g walking. The idea is that it try's to obtain muscle strength and support our hypermobile joints.

Maybe keep some of these points in mind if you want to be doing your own gentle exercises. Just don't over do it and be sure to set yourself achievable goals on the days you feel you can manage to try a little of something.

 

Sorry this is a few days late, I haven't had the best week with managing my pain!

Just a quick thank you as well to everybody who has taken the time to read my blog. The amount of page views I have had from around the world is truly unbelievable and has made me so happy :) 

My Experience With Physio - Part 1

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.

Part 2 of my physio journey will be posted soon