CRPS desensitisation CBT and getting to know pain

There is a form of therapy called Systematic Desensitisation. The aim of this therapy as I understand it is to modify the fear and anxiety responses associated  with, for instance a phobia, and replace these responses with relaxation techniques using what is called counter conditioning. The idea is that by being exposed to the trigger in a controlled environment and actively trying to modify responses eventually the intensity of the response will become diluted and by default manageable. Ok so if you are thinking of leaving the page please hang on in here. I am not suggesting that experiencing pain is anything like experiencing a phobia which is kind of irrational fear response, but for me the withering pain of CRPS, with its muscle spasms, shooting pains, burning sensations, hyper allodynia (extreme sensitivity to touch) created a kind of whole body response in anticipation of a wave of pain. I was lucky enough from about 5 weeks into the condition to have the support of a friend who somehow immediately understood the importance of desensitisation. I was lucky in that she and her husband invited me to stay with them and she began a programme of “massaging” my hand up to 4 times per day. When I say massage, in the beginning it was literally holding my hand and gently brushing her hand over my skin. This stroking progressed into more of a massage as the desensitisation began to work. Make no mistake it was excruciating! It also took months to free up the fingers. I always soaked my hand in a jug of hot water before we began. I used to read to her while she worked on my hand. It had the effect of focussing elsewhere and since I believe laughter is the best medicine we read Carl Hiaasen novels. They are hilarious if you like farce. The point is that throughout all this procedure I was also actively trying to modify my responses to the impending waves of pain. This included not closing my eyes and tensing my face in anticipation, not clenching my jaw, not stopping breathing – really, really hard with cramping and spasms. All of this effort mostly resulted in a really gummy and tight feeling in my hand and did not seem to be having any effect, but my friend persevered even when I wanted to give up and finally it began to work. Where there had just been a bloated purple hand, we began to see a pinkness around the knuckles. It went away again, but finally I was able to separate my fingers and really begin to use my hand for small tasks, which in itself was really beneficial physically and psychologically. I know that I was so fortunate to have had the love of my friend to do this, but I hope that this information may be useful to anyone in the early stages of CRPS who are avoiding any contact with the affected location. I would say if it is possible try to stroke it, draw a towel across it, try to manage your responses to the pain and keep it up! Don’t give up! It is a horrible dark condition, but if it is in a hand or foot try to bring it back to life by having some input mentally and physically. Be careful not to force movement particularly as CRPS can diminish bone density try to focus on active movement. Always be guided by a physio, occupational therapist or other health professional. They will encourage you. Don’t give up

Active Movements                  Passive Movements


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Irlen Syndrome

Lately with this heatwave we have been having in London, I find myself for the first time with what I can only suppose is hayfever – I suppose it because I have never had it before, but have witnessed friends and colleagues who experience it every summer. That ghastly feeling in the throat, nasal passages and for me, the irritation and sensitivity in my eyes. They feel gritty and immediately I am in the glare of  being outside or even prolonged staring at the computer screen, they begin to water and my vision is disturbed and difficult. I felt grateful that this is not something which I have to deal with on a perpetual basis and made me reflect on a visit my brother and his wife and two young teenage sons made to uk to visit me in about 2000.

Since they have always lived in Malawi and don’t travel abroad much I  hardly knew the boys who seemed bright and healthy and in good shape. On the first morning at breakfast the older boy had been reading an article about swimming (Both boys were swimming at nationl level at that stage). He wanted to share some of the article with us and began to read it outloud. In the beginning it was easy for him, but after about 6 sentences he halted and moved the magazine around and began  squinting. He looked up in frustration and his parents encouraged him to press on. Having made it through the article, but leaving out some parts, my brother explained that both boys had “reading and writing problems”. They are both very talkative and informed and engaging so I was surprised at this information. He went on to say that they had always struggled at school and then a friend had told him about an opthamologist in Johannesburg who specialised in these kinds of problems. They travelled to Johannesburg and both boys were tested and the diagnosis was that they had a condition called Irlen syndrome. He explained that the reading and writing problems had everything to do with the way the boy’s brains were perceiving the letters. He wrote some prescriptions for them to acquire coloured lenses which would hopefully modify these visual disturbances. At that time these lenses were not available in South Africa, so since the family were coming to UK they planned to fill the prescriptions when they got here.

I certainly had not heard of this condition before and called Specsavers to ask if they could supply these lenses for Irlen Syndrome. Surprisingly they knew all about it and were able to and so we made an appointment and being so curious about the whole story I went with on the day of the appointment. The boys chose frames were duly fitted with glasses. The older one had bright purple lenses and the younger, bright green. They looked like hippy children. It was though a really uplifting experience to witness them testing the glasses. Both boys were completely overwhelmed at how easy it was to read with their glasses, the older boy who had read so haltingly to us before was able to read perfectly and he kept saying “Oh so this is what it looks like, the words aren’t shining!” He described how his experience had been that he could read a few lines but then a band of the text would shine and become intelligible. It really was extraordinary to witness and to realise that something so simple as a coloured lens could rectify a problem which had plagued both boys all their lives. I contemplated how many children’s education might have been improved by this simple intervention. I have read a few articles which are sceptical about this, but I am recording a personal experience which I witnessed and obviously do not claim in any way to be an expert on the subject.

Check out these links:

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Use it, use it, use it……………….

Even though for me the symptoms of CRPS faded away after much, much work, in 2009, I have had to keep exercising because my big knuckles were crushed making it impossible to make a fist with my right hand. This means I have to really compensate to try to keep circulation in my fingers. As anyone with CRPS will know, any kind of movement can be sooo painful, but any kind of anything or indeed nothing can be equally as painful. The most significant thing that was told to me by my first occupational therapist in the very early days was “Try to use it, don’t force it, but set yourself tasks and do a little extra each time until you can achieve one.” Now I know this is a completely different story for someone who has a leg or foot injury, although I guess the OT or physiotherapist would help to work out a set of targets. For me it was little things like cutting an apple. It seemed insurmountable and excruciating and actually even now it is uncomfortable and I can’t always cut straight, but back then it was a whole mission. Since then though I have healed and I am very conscious that I am so much more careful about the way I do things, since my accident happened when trying to move a ceramic plant pot far too heavy for two to carry.
Having said that the act of being careful means that many calculations have to be made before using this hardworking, but challenged hand for any heavy duty activities. In fact I am more conscious generally about balance, bracing myself and protecting my hands.
This weekend with the soundtrack of Murray supporters partying on down in back gardens, the aroma of barbequed meat permeating the still air, my friend and I tackled two monstrous privet hedges in her yard. They had been so neglected that they had narrowed the width of her garden by at least four feet. Hardly any light could get into the garden because they had grown as fervently upwards as they had sideways.
This operation involved hand hedge trimmers, electric hedge trimmers a ladder and a saw. All potentially dangerous – think ladder, very tough privet and electric trimmer, but with careful planning and teamwork it all went pretty smoothly. I was surprised at how even though it is difficult for me to grip the saw, I was able to saw off many of the lower branches. It took time, but in the end it was ok and really satisfying.
My experience of exertion of this hand of mine is that always after the exercise it feels completely gummed up and really difficult to move when trying to do the hand movements. This is the time when I have to persevere to keep it from going stiff.
When I got home after the strenuous activity last evening, I ran a bath, threw in about a half a cup of epsom salts, lit some candles, put on an Ella Fitzgerald CD and lay there chilling out. I poured some baby oil over my hands and massaged them together for a long time, stretching the fingers and rubbing the small knuckles on my right hand. (they get quite swollen during activities like gardening etc).
I know that for those who are still in the throes of the ghastly and unrelenting pain of the CRPS this may all sound like it has nothing to do with you, but I tell this story because I want to encourage as many people as possible to keep going, don’t be deterred by the pain from trying to use your hands to perform day to day activities, you have nothing to lose and it is painful anyway. Obviously my gardening activities have increased with time, but there was a time when I could hardly do anything at all and was so scared to have anything even touch my hand.
Every night before I go to bed I moisturise my hands and for about ten minutes I rub them and stretch the fingers. In the morning I use the therapy ball to release some of the stiffening. It really helps. Recently a neighbour who had been on a Buddhist retreat presented me with this beautiful exercise ball made by monks (Below). It is amazing because the cushions allow you to bury your fingers comfortably in the holes and  it is a marvellous way of stretching. It feels so safe and carefully designed.   Enjoy the sunshine.

Monks Ball

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The Pain Zone

Among a list of memories about the trauma and onslaught of CRPS pain was how similar the isolation of pain is to the shock of bereavement. I remember my father had died eighteen months prior to the accident which triggered my CRPS and I had been very conscious of how the shock (even though we knew he was going) had had such a profound effect on my whole system and consciousness and of course my unconscious.
Firstly for me it was the experience of sound that changed. I felt as though I was in a bubble, and all the sounds were thicker and slightly slower than real time. The sounds of the others, not involved in the bereavement, who were outside of the bubble seemed muffled and I had the sense that they were moving and I was staying still. Their world seemed like a parallel universe, quite separate from mine. Of course the profound sense of loss had its own particular goose pimpled, heart thudding, finger tingling, dry mouthed sensations. I could hear my pulse as if being played by a brush cymbal.
Tshhhh tshhhh tshhh.
Then the hollow feeling in my gut interrupted by waves of panic.
It is always, mercifully, really difficult to remember the actual pain once it has gone, but all of the above were definitely part of my experience during the 15+- months of my CRPS. The sense of loss of the use of my right hand was overwhelming and if not for the help of my friend Elizabeth who continuously maintained circulation to it through gentle touch initially and then finally massage, the pain may have prevented me from seeing my hand as part of me. It was so black and blue and swollen and throbbing and burning and freezing. It was like an alien extension.
Others around were oblivious to the levels of pain that are possible with CRPS and like bereavement their world seemed far away. The only connection to that world was the pre-occupation to avoid any kind of collision, no matter how small. Even the tiniest bump would feel like a resounding blow.
I also became fixated on watching other people using their hands and contemplating how we just take for granted all of the millions of movements and tasks our hands are involved in for our survival. I marvelled at the design and grieved for my hand.
Like bereavement, experiencing pain has an effect on relationships. After a while when people ask you how you are, they hope that you will say you are feeling better, that you have moved on. It is a relief for them because after all what can they do or say after their initial support and early proclamations of sympathy. It is so hard to witness someone experiencing chronic pain or unprocessed loss. A feeling of helplessness can ensue and the reflex is to avoid asking. I tried as much as possible to pre-empt this sticky problem by saying “All’s well – feeling much better now!”
The other thing I discovered is until you can laugh, no matter how painful, “moving on” is a really difficult. Laughter does help to soothe pain! Check out this picture.

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Occupational Therapy

Hello All
Long time no catch up. I was invited to speak (as someone who had experienced CRPS) at a study day conference at The College of Occupational Therapists in London yesterday. The theme was Long Term Conditions. It really was interesting and reminded me of the amazing job OTs do in the health system and in the community. My personal experience with OTs was in hand units, but their job description is so broad. I think that the most important thing I could say about Occupational Therapy is that it is a philosophy – Help people to continue to engage with the activities which are important to them as individuals after injury, the onset of illness, or working with elderly clients. It is such an important function in so many ways. The basic principle of keeping active is beneficial to mental health so can ward of depression and feelings of hopelessness that can sometimes be overwhelming. It can help prevent dependency on medication to treat these symptoms, by engaging and encouraging  active participation which is a far more gratifying experience. My recent experience illustrated just how quick it is to lose control of your life when something happens to affect your health. Without the kind of support which Occupational Therapy sets out as its goal, i.e. To literally watch your back and help you to overcome unfamiliar obstacles, for the person in question, the experience can be psychologically devastating. In my case for a long time I was unable to use my right hand without exaggerating the withering pain of CRPS. During the first year when it seriously restricted the use of my right hand, apart from the obvious practical problems, it was the dominant one, so the loss was very emotional. Both of the OTs who worked with me through those horrible times were very aware of that fact and during treatment always acknowledged this in subtle ways.
For me the holistic nature of the treatment I had from OTs fitted in really well with the multidisciplinary approach which ultimately helped me to overcome the CRPS. They constantly encouraged me to use my hand, and helped me find ways of doing this. It was so important to do that and although at times it felt as though there was no progress they kept up the encouragement and it paid off in the end. Have a look at COTs Website and get an idea for yourself and check out the small films which really illustrate what I am saying. Sunny

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Body Image and Pain Management

Hello – Have been off the air for a couple of weeks, life is so time consuming! I have been reading a lot about body image and about how the way we view an injured limb or any part of our body can have an effect on the pain we experience. When I was still in the most painful months of my CRPS, I became conscious of the fact that I was weirdly fascinated by the ghastly appearance of my wrist and hand, which frankly looked as though they were in the throes of dying. The unusual texture and temperature which were confined to the location of the CRPS had the effect of making me view my hand as an appendage that was not connected to the rest of me. Now even though I was experiencing shooting pains, cramps, muscle contractions etc right up my arm and into my shoulder, it was the visual of my hand and wrist which determined where the cut off point was in my body image. It was like a mental amputation. Below is an exerpt fom CRPS Awareness – moving against pain     

“I decided that I shouldn’t look at my hand with horror and treat it as though it was an abomination. Instead I took the decision to give it praise when it achieved any movement. Instead of noting its limitations I celebrated its achievements no matter how miniscule they were. Although the extreme pain can naturally isolate an injured limb and create a tendency to protect it with strange postures, I found excluding it and treating it as though it was separate from the rest of me was a very negative approach. I worked hard on trying to feel the whole flow of my system coming to and leaving the injured hand. Now I know this may sound a little ‘New Agey’ for some, but it actually works. Your mind is a powerful driving force and if you engage with its power it can really help you to recover and your body is after all one system.”

Anyway all I can say is it worked for me and the most important thing, I think, to remember is that nothing works like magic, you have to keep at it,  even though you may not see or feel any results, don’t give up, the accumulative effect of good therapies and mental attitude – in spite of the overwhelming pain – do make for recovery. For me it was a bit like being on a diet. You see no results for a long time and then suddenly you look a bit more like yourself again and then when you see that, your mood lifts, you look at yourself more positively and everything seems to be much easier. I have been tweeting about all this. Ok so that is it bye for now. Sunny

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Alexander Technique and the Shape of Pain

I have been back on the computer a lot recently and I find myself twisting my legs around each other into a tight knot. My spine has to slacken and my shoulders hunch forward to complete this recipe for pain. I am alerted to the bad posture when I get a dark metalic kind of pain in my neck. It is quite hard to get rid of that tightness and discomfort in the neck; it is almost like a cramp. Alexander Technique is preventative and the teachers will encourage you to be aware of the relationship between your head, neck and spine; your ‘sitting bones’ and even distribution of weight, especially when you are sitting or driving or any sedentary position.

Sadly my wonderful Alexander Technique Teacher Elizabeth Atkinson died recently after a long battle with breast cancer. I am so sad about that. Lizzie literally changed my life about 14 years ago when she began helping me with back problems which had begun with a slipped disc in my lower back at about 11 years. I owe her much, because I used to think of myself as someone with a back problem which would crescendo from time to time when I had been putting strain on it. After the superb introduction by Lizzie and my belief in the technique, (from experience) I can honestly say that almost always I can see the problem arising and can do something about it myself. In the past if it had happened suddenly I would go and see  Lizzie and I would arrive in a mini-cab looking like quasimodo, hunched over and an expression of panic on my face and I would leave and walk home with my head held, my spine doing it’s job properly and with the feeling that I was at least two inches taller. Actually since learning about AT I have an exercise that I do when I am walking in the street. I am about 5’7″ and when I see someone coming towards me who is taller, I apply the Alexander Technique and I say to myself  “I am as tall as you are” and as I pass them, in my mind I am as tall and I can feel my breath surging through my body. Always a good rush!

Thats the thing about pain really,  that it takes over your body and demands its own shape. Thats the thing about Alexander Technique,  that correcting that shape is very subtle, but involves a conscious effort to feel the benefits of that rush of breath when things become re-aligned. The rush is the oxygenation of all the cells which have been deprived by the shape of the pain. I always imagine the ‘rush moment’ to look like those plastic ice bags which you fill with water and they make individual blocks of ice which you squeeze out when they are set. When you begin to fill them each ‘cell’ bloats  with the water and the whole thing changes shape. I like the idea of as many cells as possible in my body being proud with oxygen as often as possible.

Thank you Elizabeth Atkinson you have given me an invaluable gift to take with me forever. I mourn your passing. Sunny

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The Pains of CRPS/RSD and life in cyberspace

Hello been quiet for a while. Life is so jam packed. Computers are supposed to make things easier, but the thing they forgot to tell you is that machines operate at the touch of a button, but the humans who are supposed to follow up on the commands have to put one foot in front of the other just to fetch a pen from the other side of the room. We can never keep up with them and then consider all the tiny errors (not to mention the huge ones) that are knitted into the whole process and which can take weeks to rectify. In the three and a half years since I started writing my book, more and more companies have become completely remote. There is not a telephone number to be found anywhere on their websites or there are 0870 or 0845 numbers which cost fortunes to phone. I sometimes try to imagine at any given minute how many millions of people on the planet are tearing their hair out with frustration. How many ulcers are being formed.

On the other hand cyberspace has rescued millions of people, who without facebook or twitter or blogs would have been completely isolated with their painful conditions. I recently was contacted by a young woman with CRPS in her leg. She has had it for 8 years, but has never given up and keeps moving and working in spite of the pain. Her partner was trying to understand what she meant when she said that the deep dark pain had dissappeared for a few minutes during some osteopathic treatment. It is really difficult to describe the distinct and very different nature of each of the many sorts of pain that assail anyone experiencing CRPS/RSD. If you think of the rings in a tree stump which show the growth patterns of the tree and then you use that image to imagine that it is mapping the pains in a limb. The pain closest to the centre of the ring (for me) was a dark, heavy and cold pain which was always there right up my arm, trying to draw my hand into a claw. Sometimes it would be worse, but it was constant. Then the next two or three rings would represent a thick congealing glue which feels sticky and contributes to the general heaviness of the limb. The following  rings would alternatively represent cramps, muscle spasms, shooting pains or stabbing pains interspersed with more glue.  Then finally you reach the surface rings and these alternate between frostbite and having boiling water poured over the surface and then an icy breeze blowing over the wound. There is a prickling on edge sensation and a numbness always present within the other painful skin sensations. Each one is so distinct that when you mention that one of them has subsided, that in no way means that you feel better. I believe that this is the problem with diagnosis. It is impossible at any given time to fulfil (honestly) all the criteria, because it changes all the time. The only thing that does not change is the accumulative effect of all these pains on the person experiencing them and for those who have to helplessly watch people they care for suffering.

The same young woman I mentioned earlier, who is a teacher, told me about a weekend recently when, with a group of high school children on an away exercise, the facilitator of the venue in the countryside had the skills of a very good stand up comic. He was generous and able to make everyone laugh until they were holding their sides. She talked about how much better she felt at the end of the weekend. How this was in an over all sense, not that the pains had gone, but her body had been nourished by the laughter and probably by the positive experience shared by all on the weekend. I tried to visualise the laughter in the rings of pain and saw it as oxygen opening up spaces which are gummed closed by not breathing. Ok so thats it really. Check out this guy on youtube he really makes me laugh. Have a great weekend all. Sunny

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Oxytocin, keeping positive and support

Morning – just posting some stuff up on Twitter about Oxytocin. I love the information about it because it is a naturally occuring hormone which gives a feel good result and is stimulated by activities which should be encouraged anyway for general well being. Oxytocin is produced by being touched or held by someone who cares about you, a good bout of laughter, making love or breast feeding (which obviously applies to a particular group). I think that these days with our communication occurring mainly through a computer screen or smart phones the touch element is largely absent. On the other hand, people experiencing chronic and continual pain, which can become isolating very quickly, and who would otherwise be alone in their experience,  are able to find support from others all over the planet who are sharing their distressing symptoms. It is plain to see that there is genuine empathy and sympathy being passed around. For some cynics this all may be too sentimental (until you are in pain yourself) but I have to say I am touched by the generous sharing of experiences. It is hard to understand or remember pain when you are pain free. Perhaps this feeling of “being touched” metaphorically speaking, produces its own oxytocin. Certainly feels like it.

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