Question: Why is it that I hear so little from people recovering from RSI about the difficulty of pacing yourself to avoid setbacks?
Answer 1: To me, this seems the biggest difficulty, as over the year that I have had RSI, I have had two big setbacks and lots of smaller ones because it is so hard to judge what I should and shouldn’t do with my hands, for a variety of reasons, such as: the fact that the pain doesn’t sometimes set in until hours or days later, the fact that you can overdo it a little bit over a period of days or weeks and you can build up a bad reaction that way, and I am still in the process of learning what I can and can’t do a year on.
I think it is similar to recovery from ME (from what I’ve heard, but not as bad) very very gradual, like making mayonnaise, a drop at a time or the whole lot curdles! Although I take loads of exercise, i.e. walking, for me the emphasis in my mind is always on NOT doing things in order to get pain-free.
I am making progress and I know I will recover, but it is so slow it does my head in at times.
Answer 2: I have had RSI for the last eight years and it has been steadily getting worse. Yes it is difficult knowing what to do and when. I have found that often it is just a case of carrying on through some of the smaller setbacks and having to put up with the pain. Unfortunately I have found that only complete rest from a keyboard and sitting at a desk has been the only way I have got pain free – coupled with intense physiotherapy. Pilates and the Alexander Technique have helped me, as well as frequent work-outs in a gym. Strenuous exercise helps enormously with the pain management. Currently I am off work, and have been so for the last six months and it seems unlikely that my employer (The Guardian newspaper) will have me back, so I am on the lookout for a new career.
Answer 3: The Pain Management course at Input, at St Thomas’ Hospital, focus very strongly on pacing and have a very detailed system for developing and using it. It is not easy to stick to but it really makes a difference. Putting up with the pain is a bad idea as it entrenches the condition in my experience. I believe one can get it under control. I recommend voice recognition software (the Guardian should install it for you), pain management regimes, and exercise, stretching, body awareness, postural re-learning, and swimming. I started having the condition in 1992, and had a really horrendous patch in 1994/95, but I am a writer and work all the time on the computer, and can now cope. You can do the course at St. Thomas’ on the National Health. GO FOR IT!
Answer 4: I have had RSI for five and a half years and what you say about pacing yourself for recovery matches exactly my experience. What I’ve come to deduce about my own condition is that there are three things that can make it worse or prevent it getting better.
- OVERUSE. As you say, it’s often impossible to know when you’re about to go too far; you only know when the damage is done, or some time afterwards. I’m sure you’re right that a bad reaction can be built up over a period, so that what tips you over the edge may be something very minor in itself.
Yet there are also times when one feels a warning twinge. I know now to respect those and to take an immediate rest, maybe for an hour or more, sometimes even longer, before resuming typing, writing, or whatever. In order to maximize the important activities it’s necessary to avoid any unnecessary hand use one can. My left hand is very much better than my right, and I therefore use it virtually all the time for things like opening doors, picking up objects, etc. I realize things are much harder for people whose hands/arms are equally bad.
- POOR POSTURE, both in typing/writing and in other activities, can be lethal. I find very few chairs comfortable, and sitting for a long time anywhere without change of posture (e.g. in meetings, lectures, concerts) can be an ordeal. I’m able to do much of my work standing up and have found regular walking, at least 2-3 miles a day and often much longer, has a very good effect. (Good posture while walking is essential too!)
- FALLS AND KNOCKS can be disastrous. Tripping on a flight of steps 2 years ago and supporting myself heavily on my right wrist caused damage that lasted several weeks. Knocking the right arm inadvertently (or being knocked) can have bad results too, though shorter-lived. Immediate use of Tubigrip to contain any swelling seems to be effective, but of course there’s no foolproof way of avoiding such accidents.
I’m afraid one other thing I have learned is to be very sceptical of the medical profession, both mainstream and alternative; I have seen several doctors, two specialists, at least ten physios, two osteopaths, an acupuncturist… Every case is unique, especially with a disease as volatile as RSI, and it’s necessary to monitor constantly whatever advice you are given to see if it works (or still works) for you. You are in fact your own best doctor.
Answer 5: I have had RSI for 2 years and am almost ‘recovered’. From having been totally crippled, hardly able to walk, feed myself or anything, I am now typing this by hand and have just come back from a very energetic canal boat holiday. Pacing was one of the tools I was given by the Pain Management Programme I went on and I think it was central to my ‘recovery’ (I put it in parentheses as I don’t think you ever get rid of RSI, but I see it a bit like diabetes, a permanent condition which, if managed properly should not get in the way of a full life). We were taught how to pace ourselves using a rigorous method of setting baselines for tasks which were the most painful. For me these were standing, walking and sitting without my arms supported on a cushion (these were the basics, later I moved on to typing, chopping veg, writing etc). When I started the pain management programme I was unable to do any of these things for more than 1 or 2 minutes without the pain levels rocketing. The aim of pacing as I was taught it was to accept a base line of pain as permanent (difficult in the extreme). Having accepted this, the aim was to not allow the pain to increase. So daily, with the help of a digital timer, we would increase the amount of time we were doing our tasks, maybe by only 15 or 30 seconds a day to start with (it sounds crazy, writing it , but it really works… It is as if you are having to trick your pain control system, very gradually, into allowing you to do more). 4 intensive, painful weeks later I was able to walk for 8 minutes, which was an amazing liberation, could stand long enough to make my children’s packed lunches and was starting to be able to sit with my arms unsupported. 14 months on and I can walk 5 miles, can dance and can do most things I want to with my arms. Still can’t drive or play tennis, but they are next year’s goals.
Yes it is so so slow, and it certainly can do your head in, but I would like to encourage you, it is worth it. RSI is a foul condition, but I really don’t believe it needs to ruin your life.