I know exactly how you feel. I had intended to be totally independent throughout my “working” life; never having to rely on my boyfriend/husband for financial support etc. and RSI got me in my first job. Initially, I felt extremely resentful but also always believed I would get better and followed the quest of many contributors to this list in desperately trying to find “the” answer, which although a natural thing to do can become self defeating over time because the struggle to find a cure becomes more and more depressing as one thing after another does not work.
The pain management course I went on was the input course at St Thomas’. On the course they teach you about why you are experiencing pain and how to understand what’s going on. To me they provided a rational explanation of what had happened to me which turned out to be the beginning of an acceptance of my condition. They also said the unpopular thing: that someone who had had chronic pain for as long as most people attending the course (7 years in my case) were unlikely to become pain free but a lot could be done to make the pain more manageable. They spend a lot of time on the course helping people to reduce their reliance on pain killers and this helped a lot of people on my course. Because I refuse to take anything except for when I really cannot cope this wasn’t particularly relevant to me.
The pain management course taught relaxation techniques, stretches which can help to improve the flexibility of tight muscles etc. and provided an exercise regime which begins at a pathetically low level which feels like an insult to someone to feels generally healthy but if followed can help to increase stamina without producing excessive pain. The basic principle of the course is that by very very gradually increasing what you do it is possible to alleviate some of the tightness without inducing excessive amount of pain. Part of the program is to introduce the concept of pacing where you identify things that you want to be able to do, break them down into steps that you can manage and then gradually increase what you do. This was one of the most contentious elements of the programme because the majority of people on the course I attended were still working and it seemed impractical to try and pace things that you had to do. However, it can work, when I attended the course I could only sit for about 15 minutes but using pacing and increasing the amount of time sitting by about 15 seconds a day I have managed to increase my tolerance to 45 minutes. (Whoopie!) (This seems to be my sticking point and I can’t get past it but it’s better than nothing)
To get the most out of the programme you do have to follow the plans provided closely. Initially the stretches and exercises did help me to become much less tight and more flexible but when life becomes hectic these are the first things to go and then I become more tight, inflexible and painful again. They also teach people how to think about the problem differently. Again lots of people didn’t like this part of the course. It was known as “challenging unhelpful thoughts” and tried to encourage people to think more positively about their problems so they tried to get people to turn the “why me” thoughts into “it could be worse” thoughts and the “it’s bad again I can’t cope thoughts” into “it’s only a flare up, I’ve dealt with this before and can do it again”. However silly it may sound this approach can help deal with some of the more depressing sides of having chronic pain.
You need to make sure you get on a pain management course rather than a “pain control” course which may make more use of pain killers. The emphasis is on management, you get past the thought of a cure and focus on making life more bearable with a minimum of drugs. It did take me two years to get on the course but the insight and understanding it provided me has made a difference, if not always in pain levels, at least in my understanding of what’s going on. The carpel tunnel issue-there is a strip of I think it’s cartilage across the base of the hand /wrist area (this may not be quite anatomically correct but I’m not a Dr) which creates a tunnel through which the nerves into the hand pass. If you type or play the piano with your wrists bent the nerves either rub across or are compressed by this cartilage which causes friction and can damage the nerve sheaths causing, pressure possibly damage and pain (in my case tightness around the wrist as if I had a tight bracelet around the wrist and feeling that the muscle in my forearm was trying to pull my wrist up to my elbow).
I think what my chiropractor was talking about with me was that the strip of cartilage had slipped out of place and instead of forming a tunnel was putting pressure on the nerves (chiropractors-don’t shoot me if I’ve not understood this correctly). By holding either side of my wrist and giving it a jolt upwards the cartilage seemed to move and the pressure was relieved. However initially it would fall back down quite readily so he wrapped tape around the base of the palm of my hand so that I could not flex my hand in that direction and push the cartilage out again. Anyway, whatever he did it relieved the tightness around the wrist and pain in the forearm and as long as I’m good and don’t do things to irritate the area, I have significantly less pain there than before. (I still can’t type or do anything particularly spectacular) and have had to give up all my hobbies of knitting, tapestry, can only do limited gardening, and driving can be a pain.
Dr Pearson worked for the NHS out of Harold Wood hospital and the Homerton hospital, I don’t know if he’s still there. I asked to be referred to him specifically because various articles I read at the time cited him as the person who knew most about RSI. I was involved with “the body action campaign” which has been mentioned on the list before and Dr Pearson was also involved with this for a time. I know some members of the list have not had such pleasant experiences with him but I think a great deal of his opinion and although he might not say what people want to hear he does know a great deal about this problem.
On a brighter note, since having RSI I have achieved a great deal more than I did before having the condition (a BSc honours in psychology with the OU, a Masters degree in occupational psychology and helped to raise money for other people with disabilities by demonstrating my voice activated computer system which at the time was very much emerging technology). I did my degrees in the hope that I could establish a career using my head rather than my hands but my dissertation proved once and for all that I could not cope with even small amounts of report writing which would have been necessary even whilst using my head for a career. However, not to be defeated, I have now helped by boyfriend create an Internet business selling T-shirts (writing html pages by voice-highly entertaining I don’t think) and am currently busier than I have been for a long time. Painful but mentally active! I hope I haven’t bored you too much, if so just don’t read it but I hope this answers some of your questions. A pain management course can help but you might not appreciate it at the time (I know I didn’t).
Comment 1: I am pretty sure now that the pain management course will be a big help to me. I have already been through the pain control stage which included Morphine and Anti-Depressants (not good). My family hated me being on them, they tell me I was like a zombie. I have already learnt a great deal over the years about what aggravates and what helps me. Hopefully they can teach me more. The sitting problem is the same for me too; I would rather walk all day than sit. I lie on the floor at home to read or watch TV. I congratulate you on doing you degrees; I can’t imagine having the same patience (maybe in the future). You mentioned driving; this is a great loss to me also. Can I ask the group if anyone has any good tips for helping to alleviate some of the pain caused by it? A couple of people lately have said we should stop moaning and do something about it. Maybe they should remember that on their next really bad day when nothing you do can take any of the pain away. I believe moaning about it can help; it gets it of your chest rather than bottling it all up. I for one am very grateful to everyone for letting me moan and will listen to anyone else who feels the need.
Comment 2: I came across your message this morning and have found myself thinking about it most of the day. Your Doctor Pearson is someone I will definitely try to see. My Rheumatologist was a waste of space, and probably helped my condition to worsen. I would be interested to know more about the pain management course you went on. I have been put on the NHS waiting list as my insurance company refuse to pay. I am told I will probably wait for 12 months for an initial appointment. I don’t mind waiting if it is going to be worth it. I have not heard of carpel tunnel from any of my doctors, could you tell me about it if you don’t mind. Your symptoms sound very familiar to me, although I have only had them for four and a half years (a lifetime to me). I too have been told to live with it as it cannot be cured. Your final words were very apt . I find myself swinging between “Things could be worse at least I can walk (although very painful at times), and there are lots of people worse off than me, also I am really lucky to have my family to support me “. To “Why me, it’s not fair, I had plans for my life, other people don’t understand, not really, how could they”? I am sure you do though.