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Gibbon
United Kingdom
138 Posts |
 Posted - 10/13/2009 : 12:39:01
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| Hiya, having seen such fantastic improvements in such a short period of time, I really want to try and spread the word for other people who were/are in my condition. A good place to start seems to be at the GP level (in the UK), as these are the primary deliverers of medical care and the first port of call for all chronic pain sufferers. I wanted to craft a letter that appealed on a medical level, and not just on an annecdotal level. I'd be interested in comments/suggestions for improvements etc.... |
Edited by - Gibbon on 10/13/2009 12:39:37 |
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Gibbon
United Kingdom
138 Posts |
Posted - 10/13/2009 : 12:40:45
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Here it is so far:
I had been suffering from RSI for 3 years, the last year and a half of which to a pretty debilitating level. Having exhausted every single medical outlet and after having talked to probably over 2 dozen various medical professionals it was pretty clear that there was no medical cure for my symptoms. And so, I thought I’d look around the internet for any non-mainstream approaches.
One name and one book kept appearing on my searches “Dr Sarno’s Mindbody Prescription” which sought to address a catch-all condition described as TMS. Pushing to one side the fact that Dr Sarno had the same sort of ring to it as Dr Nick the quack doctor from the Simpsons, I was impressed by the numerous (and apparently genuine) testimonials from a wide variety of people who were adamant that following the recommendations in The Mindbody Prescription had led to a reduction and in many cases a complete cure of their symptoms, including RSI. Now, I have to say my expectations were pretty low, but a £5 second hand book from Amazon I figured was worth a shot in the dark.
And, to cut a long story short (the long story will be filled in below!) it seems to have worked. How, why and by what mechanism I don’t entirely know, but I’m currently typing this by hand, when I hadn’t typed anything at all for over a year and a half without using voice recognition software. I wouldn’t have believed it if it hadn’t happened to me. But it has. And whatever the reason it seems worth further consideration.
The background:
There was quite a bit of stress going on in my life at the time of the initial onset of symptoms, I would be spending about 16 hours plus (pretty much every waking hour) either playing the guitar or on the computer. I'd also got somewhat addicted to Internet poker, so a typical day would be eight hours at work on the computer, come home, switch on the computer, play pretty much continuously until past midnight, then go to bed. My ergonomic set up was pretty much non-existent, a stretched arm with a bent wrist making tens of thousands of clicks every day. I had just decided to take a computer course qualification when I first got a tingling sensation in my right hand. It was suddenly uncomfortable to click on the mouse, indeed even uncomfortable to hear the sound of it clicking (a bit like hearing nails on a blackboard). I could type but anything more than about 30 minutes at one stretch would lead to short-term aching in both hands and wrists.
This continued for about 12 months before a completely sudden deterioration of the condition. I had some reports to type and as result was pushing my body through the aching from typing too much. Suddenly it felt as though something had just "gone". Both hands were completely inflamed, as though from really severe pins and needles. From that moment on I was unable to type at all or even write a couple of sentences without going flares up of pain often lasting an hour or more.
Since then there was a gradual deterioration in symptoms. Persistent levels of pain in both elbows, occasional pain in both Achilles heels, a consistent level of low-level pins and needles in both hands and wrists. I found that going swimming brought on symptoms in a completely different way. Unlike typing or writing which would bring on symptoms instantaneously, I felt fine immediately after the swim, and yet over the next few hours both elbows became more and more inflamed. To the extent that by the evening I was unable to sleep due to the pain.
After reading "It's not carpal tunnel syndrome" I started to try some of the stretches recommended, though this seemed to make things even worse. I started waking up with the whole of my arm numb from the elbow down to my fingers, and with numbness and grip strength severely diminished continuing throughout the day. Thankfully this has only happened a few times
Then after three years since the onset of initial symptoms, and over a year and a half after they significantly deteriorated, I bought a copy of Dr Sarno's "The Mindbody prescription".
The synopsis:
Dr Sarno contends that a whole host of chronic pain conditions are caused as a result of mild oxygen deprivation, which occurs as a result of unconscious control of the autonomic system. He argues that psychosomatic roots are at the heart of many of these conditions – ie. for whatever reason (he suggests a need to limit unconscious emotions reaching the conscious) the unconscious brain starts to limit oxygen levels through the autonomic system provoking a “real” physical sensation – in RSI’s case pins and needles, pain and numbness. The suggestion is that the unconscious brain will bring on such conditions as a way of limiting exposure to harmful situations or emotions. (eg. RSI will effectively remove you from many stressful work environments, or at least force you to significantly cut down your work rate….) That’s not to say for one second that people “want” to have RSI, or that it’s “all in the mind” – this occurs on an unconscious level and provokes very “real” pain sensations.
The treatment;
It’s pretty simple
1. Get in touch with your emotions – start journaling about all the stuff in your life that’s messed up or that you try to repress…
2. Start doing exercise
3. Stop being afraid of the pain, push yourself to do activities you’ve stopped (within your comfort bounds)
4. Meditation, positive mantras etc.
And that’s pretty much it. Obviously he goes into rather a lot more detail on each of these but that’s the treatment in a nutshell.
The results:
Within even a day of reading the book was doing things that previously I hadn’t done for months/years, and noticing that there wasn’t as much pain associated with them. Now three weeks on I can;
Play the guitar with no pain
Write about 600 words with no pain
Type about 600 words with no more than mild tingling
Play badminton, go swimming, go running – all with no pain.
This for me is absolutely incredible – I have about 80% of my life back, and I’m fully confident that I will continue to see improvements going forward.
Prior medical contact:
In terms of medical professionals, i've pretty much collected the full set:
6 different GPs
1 hospital doctor
2 occupational health professionals
2 rheumatologists
1 neurologist
2 physiotherapists
A few nurses
3 different "Access to Work" disability professionals
2 MRI scans; brain and neck
2 courses of phsyio
steriod injections in both wrists
chest x ray
nerve conduction studies
blood tests
urine tests
NHS acupuncture
Possible Comments:
1) this is just post-hoc attributation – just because your symptoms improved after you read the book, doesn’t mean it was because of the book. True, there is that chance, but after 3 years in which there was nothing but a gradual deterioration of symptoms, to have such a dramatic turnaround literally within hours of reading this book is statistically unlikely to say the least.
2) Yes you improved, but it’s self selecting – ie. You chose to buy the book, that in itself implies that you already recognised/accepted the key psychosomatic tenet. True, this is simply a one person anecdote, not a clinical trial.
3) This is just the placebo effect. Unlikely, given the numerous other “treatments” I’ve had along the way – all given through the NHS, and all singularly failing to provide any relief in symptoms despite my great hopes.
4) Ok, your recovery after reading the book was down to chance, let’s say 1000-1, but the other 999 people who also read the book and failed to get better aren’t writing about it right now – they’ve simply moved on somewhat disappointed to another “cure”. A fair point, one that can only be rebutted through clinical trials. Which brings me on to….
5) Where’s the medical evidence? This is the most thorny one. First off, clinical trials on people with symptoms such as RSI are a little tricky. There was no test which I underwent that showed up positive for any structural problems (MRI for back, nerve conduction tests, blood tests etc). In effect the only evidence that I had RSI was self referential. I said it hurt when I did certain activities and that’s it. It’s not like a drug trial against a bacterial or viral agent where you can have nice before and after measurements. The only yardstick therefore is the subjective pain scale.
Now, how do you double blind in an experiment where the “cure” requires half the group to simply accept a psychosomatic diagnosis and then go along with the prescribed treatment actions? If you start with a group of RSI sufferers and randomly split them, I would suggest a majority of the “treatment” group would downright reject the diagnosis, indeed be insulted by it. It would be like having a drug trial where the majority of the “treatment” group refused to take their medication. And the only alternative is to have a self selecting process, where you simply measure the progress of the people who do accept a psychosomatic process – but this is not clinically satisfactory because perhaps those that are amenable to such a diagnosis really are different from other RSI sufferers.
There is some clinical evidence that patients suffering from RSI/CTS had mild oxygen deprivation in some of the tissues involved, and a population study of RSI sufferers which found that the biggest predictor for who would develop the condition was not ergonomics, repetitive motion etc. but personality...but admittedly it's not by any means medically conclusive.
My hopes:
I’m not claiming to have found proof of a magic cure for RSI, nor do I want other people to blindly follow my actions before being thoroughly checked out by medical doctors to rule out any specific structural problems. But, for people like me who have gone through the entire gamut of medical treatments without any success, I think its worth a go. A second hand book from Amazon set me back £5, so I don’t think there’s anything much to lose, especially when compared with the cost of my medical treatment over the past few years. Indeed, I would have happily paid £20,000 for a magic potion which could have taken me from where I was 3 weeks ago to where I am now, which puts for me the required odds of success at only 4000-1. In short a long shot that might be worth taking. Or at the very least, worth considering.
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Edited by - Gibbon on 10/13/2009 12:46:51 |
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Capn Spanky
112 Posts |
Posted - 10/13/2009 : 13:32:55
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Gibbon -- I think your letter looks great! Hopefully it will not fall on deaf ears. (Very nice success story as well).
I have mentioned my amazing recovery through Dr. Sarno to a couple of physicians. They seemed interested, but only to the point of mild curiosity. I doubt that it changed anything about the way in practice medicine.
But that doesn't matter. The important thing is getting the word out. If enough of us do that, maybe it will have an impact. Thank you for taking the time to create this letter! |
Edited by - Capn Spanky on 10/14/2009 18:33:01 |
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pandamonium
United Kingdom
202 Posts |
Posted - 10/13/2009 : 14:36:21
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Great stuff Gibbon.
I wrote a similar letter to my GP, he also was only mildy interested but as capn_spanky says, if enough people do it maybe they'll start to take note. And since the PCTs pay for all that stuff you listed, it is in their interests to think about it.
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A beginner's guide to psychology: If it's not your mum's fault.... it's your dad's... |
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Gibbon
United Kingdom
138 Posts |
Posted - 10/13/2009 : 15:28:15
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thanks for the replies - i'd agree that it might be best to not expect much more than mild curiousity......
I've thought this before, there seems a real deficit of patient records detailing how conditions that GPs regularly treat of a chronic nature respond to treatment. My own experience has been very much ad-hoc, both for tinitus and RSI. Obviously clinical trials are the most reliable indicator, but with so many conditions so poorly understood, one would have thought that some form of national database would provide significant medical benefit. The NHS national database if it ever gets past all its technical gremlins seems designed more for use as a personal record rather than for medical cross reference which seems a missed opportunity....
Who's going to actually going to record my response to all the various treatments prescribed by my GP? No-one. Who's going to record the dramatic recovery from accepting the TMS diagnosis? No-one. It seems negligent to say the least, ensuring that bad practice is repeated and good practice not learnt from...
oh well.
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HilaryN
United Kingdom
879 Posts |
Posted - 10/13/2009 : 15:55:32
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Hi Gibbon,
Many thanks for doing this. I agree, the more of us who speak out, the more chance there is that people will start listening.
I haven't had time to read all your letter yet, but I think what I read so far is great.
Worth bearing in mind that doctors are busy people, so might not get to the end of the letter. Have a look here:
Tips on Writing a Letter to your Doctor
You might also be interested in this wiki page:
http://tmswiki.wetpaint.com/page/Promoting+TMS+Awareness
Hilary N |
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Writing a letter for my GP....what do you think?
