Question: “I’m beginning to think that everyone else on this site no longer has any thoughts or will to get better; everyone seems to have just resigned themselves to disability and discussion of what bike to ride and chair to sit in”.
Comment 1: I’m sorry to have to disillusion you but once you have had RSI for several years (I’ve had it for 10 years and I’m only 35 so work that one out) accepting that the problem isn’t going to go away is an important step to coping. I have seen 3 rheumatologists, 3 physiotherapists, an osteopath, homeopath, acupuncturist had massage and been on a pain management course and still have the problem varying from extremely uncomfortable to unbearable depending on how bloody minded I feel. I always hoped that I would recover but when I attended the foremost pain management course at St Thomas’ after having this condition for 7 years I was informed that if you’ve had the condition for that long, looking for a cure is self defeating and is only likely to lead to serious depression. Any ‘cures’ which are achieved tend to happen when the condition is spotted in its early days.
They gave me a very plausible explanation for what happens with RSI and many other forms of chronic pain (the formation of scar tissue at a very microscopic level which without proper management very soon after it occurs, attaches itself to other structures contracts and becomes less and less flexible over time, if not treated at the time the injury occurs). Having experienced this kind of problem on a much larger scale after an operation on my feet when I was younger I am quite happy to accept this description (I’m afraid it’s grossly oversimplified because I can’t be bothered to waste hand power to get the description accurate).
The best you should realistically hope to do is to keep this tissue as flexible as possible using a series of gentle stretches and exercises provided by the course. They also recommend adopting a process of living which involves pacing yourself and overtime it is hoped that tolerances will increase (before pain sets in). Some of this is a little unrealistic unless you are willing to go back to first principles and build up your stamina on even simple things like typing, sitting, gardening. If you are angry in hurry and trying to live a life as normally as possible pacing can be a pain. But it does work if you can spend the time.
I am quite happy to copy these and other information that may help you improve your lot a bit. You can e-mail me at firstname.lastname@example.org and give me an address that I can send stuff to if you wants. Comparing RSI to severed limbs etc is a bit foolish and naïve. I’m afraid because damage of that sort, although extensive only occurs in a specific area and the amount of movement regained in such situations is limited. People with severed limbs also have to struggle with the problems of scar tissue but are given the treatment they need when the operation is done. They do not have to fight through a morass of people who do not believe that the condition exists; a NHS that means each consultation can take 18 months to get and a lack of follow up support that can help people struggling to cope do better.
The people on this list have not generally given up looking for a cure. They have more often got fed up of banging there head against a brick wall, having hopes raised and dashed again, stopped looking for someone to wave a magic wand to make them better and learned to live with a problem which is a bloody pain in the neck…back…shoulders…elbows…forearms…wrists…fingers…and if you’re really unlucky spreads down to the hips, ankles and knees. I hope this provides you with the attention you need and when you’ve finished accusing people of giving up and if you want some stretches which can help but won’t solve the problem then please feel free to contact me.
Comment 2: Your e-mail raised a few interesting thoughts – many of which I’ve experienced. I’ve had hopes raised and dashed, and have had to come to terms with the fact that I am most likely going to have to learn how to cope with the condition. A couple of people have talked about pacing/cognitive/managing pain stuff recently. I’ve been trained in all three for a different condition over the last few years and I found them a real benefit – it just shows that simple structured advice and confidence can be as effective as intrusive treatment! I love the list, especially in a world where many non sufferers (and medics) seem skeptical!
Comment 3: Seeing the many replies to this posting is saddening. Here at my place of work, we have found that in the very early stages we seem to be seeing true cures if preventative measures are put in place immediately. What is so sad is that most people don’t even start to complain until it is either too late or nearly so. Once the problem becomes chronic, there seems little evidence that it can be cured – only managed (I do hope I’m wrong though). This does put upon me as a Safety Adviser an enormous moral duty to pressurise supervisors here to check with their staff and act quickly. Sadly we haven’t managed this with some staff, although we’re getting better all the time. This is the real message – prevention, although a cure would be fantastic as well.