For those of you who don’t follow on Facebook, plus for those of you who do and want more details I thought I would provide you with an update on how things are going.
I have been religiously performing my physio exercises (Pilate’s based) for over 5 weeks now. Last week I had my first follow-up appointment and Kate was impressed. I have mastered the technique of keeping my pelvis still whilst carrying out the exercises, so much so Kate my physiotherapist believes I could have a tray full of drinks on my abdomen and not spill a drop! I had been secretly fretting that I hadn’t been performing them correctly – you know me I like to worry about the smallest of things, so it was good to know that I had getting it right.
The difference in my back pain has been phenomenal. Before starting physiotherapy and seeing the spinal surgeon I had been confined to bed for weeks due to the pain. Even in bed I couldn’t get comfortable. All I could do was apply hot water bottles and take copious amounts of pain medication. I was thoroughly miserable and there were more and more things I was simply unable to do due to the pain.
I am probably one of those most sceptical people you could ever meet in regards to physiotherapy. I have seen physios on and off for years, only two of them have been half way decent and this was years before I had the diagnosis of Ehlers Danlos Syndrome.
Other than the two lady Physios who in the past treated my severely sprained ankle and a case of Plantar Fasciitis in both feet, my experience of physiotherapists hasn’t been great. One was so bad in 2011 I just stopped attending. She claimed to have specialist knowledge of EDS, that may have been the case but she had no knowledge of Dysautonomia and what she was asking me to do was positively dangerous. Asking someone who regularly blacks out due to standing to increase the amount they walk around by 10% every week clearly shows either a) she doesn’t understand dysautonomia, b) doesn’t believe that I would faint, c) simply doesn’t care and uses a one size fits all approach or d) does not have the specialist knowledge she claimed to have because walking causes me such a significant amount of pain . My gp actually tried to refer me back to her this year when I told him I was having private physio. I told him exactly what I thought of her methods and he replied “That’s a no then?”.
Kate has been honest from the start and said she knew very little about Ehlers Danlos Syndrome or Dysautonomia and would be led by me, she would conduct research to find out the best way to treat me. However I having heard all that guff before I didn’t really believe her and left the first session thinking I would give the exercises a go but wasn’t expecting any massive improvements.
By the time my second appointment came around last week the results were quite astonishing. I really wish that I had taken measurements of my stomach before commencing the exercises as my tummy is now the flattest it has been in years. However that is just cosmetic, the results on the back pain front have been amazing. Now my back pain has not disappeared completely, nor have the muscle spasms but now instead of my back being sore for days on end the pain just lasts a few hours. The spasms can last anything from a few minutes to an hour or so which is a massive improvement because on bad days all that was needed to start a spasm was for me to move my arms above waist height. I still can’t lift anything heavier than a cup of tea without landing myself in trouble and I still have to be very careful how I move but it is still an enormous improvement. I feel like I am getting some of my life back now that the pain has reduced. I had no idea how badly the pain was affecting me psychologically.
Initially when the back pain started to ease, it happened at around week two, I just assumed I was coming out of a flare up. Once I got to week four and the improvement had been sustained I had to admit that the physio was working. Hubby told me my posture was also much improved and said “You aren’t moaning as much about your back” meant in a loving and kind way I am sure! I do find the exercises demanding even though they are below what would even be classed a beginners level of Pilate’s and they are mentally tiring as well. It is all about control, as anyone who has EDS will tell you floppy bodies are very hard to control. I need to have complete quiet whilst completing my exercises as I need to keep focused on what I am doing to ensure I perform them accurately.
Last week the physio session was very painful. Kate informed me that between our sessions she had been researching EDS and Dysautonomia and had found some more exercises she wanted me to try. However before showing her my exercise technique she wanted to massage my back and try to get the muscles on the left side of my spine more relaxed. When a physio says massage from previous experience I know its going to hurt but I also know afterwards my back is going to feel wonderfully loose. Kate had been observing my gait when I came in for appointments and could see I was holding myself in such a way that was causing a lot of tension down the left hand side of my body. She must have worked on my back for a good 30 minutes. There were some sections such as my thoracic spine and the base of my neck that were incredibly painful. The muscles did seem loser afterwards but the following day the pain in my thoracic spine was very intense and took hours to get under control.
Kate was happy with my technique when I performed the exercises and I told her how much I had enjoyed doing them. She then started showing me the next 4 exercises she wanted to introduce. Unfortunately one has had to be adapted again to below a beginners level simply because I don’t have the strength to be able to perform the exercise safely. Like many people with EDS I have weak muscles, I can not perform any exercise where both legs are lifted at the same time. I struggle with lifting one leg out straight from the knee as my technique just collapses if I don’t keep reminding myself to elevate my leg. It is frustrating for me when I think back to how fit I was and how much walking I used to do to now have so little strength in my legs. Even now after 4-5 weeks of performing the exercises I can’t increase the number of repetitions due to their weakness.
One of the exercises I have been doing since my last appointment has been to increase the mobility in my thoracic spine. I know that sounds crazy with having EDS you would think that I would be floppy and bendy all over. Kate thinks that from years of my body naturally trying to protect myself this part of my spine has become stiff which then leads to pain and the vicious cycle starts. You don’t move due to pain either consciously or subconsciously and then when you do move it is more painful. Completing this exercise has led to more pain in this area, it’s not horrific but I am constantly aware that it is there and have been having to resort to hot water bottle again. It is a little disappointing and you start to wonder if you are creating more problems. I know the muscles and joints will be sore from not having moved properly but how sore is a “good” sore and when does it become a warning sign? My questions will be answered this afternoon and I will continue with my blog post then…..
I was very sore after my appointment yesterday, not only did Kate perform very small and gentle manipulations on my spine but she also deep a deep muscle massage on it. This was painful especially on the right side of my neck as I shrieked Kate said “You’re right-handed aren’t you?” To which I squeaked “yes” in reply. I could feel how very tense that side of my neck was it must have felt like a sheet of steel under her fingertips. I always find the process of massage quite weird as initially it doesn’t hurt too much, then the pain increases dramatically and then magically as the muscle finally admits defeat it relaxes and the pain is gone. You can feel the way the muscle moves under her fingertips has changed because there is no more resistance its bizarre. Not enjoyable but I always feel better afterwards.
I only had a 30 minute appointment yesterday and the manipulations and massage took up most of that. Kate said I had tolerated much more than I had the week before which she was amazed at. What really shocked her was the complete change in my posture. She said my shoulders are not rounded forward anymore when I sit, I am walking better and my overall posture is now brilliant. She has found the speed in which it has happened remarkable. She confided to me that many of her patients take 3 to 4 sessions before they understand the mind-body connection needed when performing the Pilate’s exercises. What she means by mind-body connection is the ability to think of a muscle in isolation and move it in a certain way. I was pretty pleased that I was an “A star” patient and had understood from week one how important it was to concentrate on the moves. I think I have my mum to thank for that and my dad. Both my parents were really into Yoga when I was a child and would get both my sister and I involved in their Yoga sessions which always ended with meditation.
I have been adding in some Yoga moves at the end of my home Pilate’s practice purely to try and relax my spine. I have been performing the Cobra and the Cat which helps me remove any tension in my muscles after completing my Physio exercises. When I discussed this with Kate yesterday she said “where do you know about those moves? Because they are used in Pilate’s” So I told her about my parents Yoga sessions and that I had done Yoga as a child. I think initially she had been worried that I had looked these up on the Internet and thrown them into my routine. Now she is aware of my Yoga family history as it were she is happy I am using the correct technique. She has already worked out my personality is very “Boom and Bust” meaning I push myself until I collapse, hence she wants to make sure I am doing everything very slowly and not jeopardising my health.
When I was fit and well I did exercise (again in a boom and bust way, which probably sped up my eventual collapse on 31st May 2008) but I found floor work like stomach crunches etc incredibly boring. I liked bouncing around doing aerobics or walking the dogs. I joined a gym many, many moons ago and found the machines mind numbing. I have never really liked any exercise where I wasn’t in constant motion. So I am bemused that now I am doing what I class as floor work (Pilate’s) I am really enjoying it. I like the fact it is mentally challenging and time to focus on myself. I am loving the results less pain and a trimmer figure.
It’s not a cure for Ehlers Danlos Syndrome, I am still having frequent dislocations and hip pain, nor is it a cure for Dysautonomia, this morning I have had several mini blackouts and my heart is racing. It is just really nice after years of not being able to do things that I have found something that I can do which is safe. There is no risk of me fainting as I am lying down (well when I say no it should have been phrased there is a reduced risk). Also the fact I have a very sturdy pine coffee table next to where I complete my exercises means I can crawl over and get myself up off the floor when I finish my morning routine as I call it now.
I know Pilate’s is not suitable for everyone and it certainly should not be attempted unsupervised for those of us with hereditary connective tissue disorders where the risk of dislocation is high. I am just extremely lucky to have found a Physio who is willing to learn about EDS and Dysautonomia, who will adjust exercises when she sees I can not complete them properly rather than blunder on and make me feel like a failure like physios have done previously. I know that she is just a phone call away should I run into trouble and my calls will be returned. Most of all I am enjoying myself, which when activities are limited is an absolute boon.