Pain Clinics - a 'patients' view

I was offered the chance to attend a chronic pain management course last year when the orthopaedic surgeon decided that surgery was not an option for my left knee, and that I ‘just had to learn to live with the pain’.

I wasn’t particularly happy to learn that the first step was a visit to the pain psychologist. I did not want to be told again that it was all in my head, a comment familiar to all of us by now, I am sure! The psychologist was very helpful in explaining about the course and its aims, and assured me that they knew I was in pain. She said that they could often not reduce the pain people were feeling, but taught them how better to cope with it through relaxation, pacing and exercise.

I also had to see the physiotherapist to be assessed before I could begin the course. She, again, was very helpful, gave me a walking stick and taught me how to use it without tripping myself up (OK, I’ll confess, I’m still learning that part!).

A psychologist, a physiotherapist and an occupational therapist took the course. We also had visits from a dietician, and the sister from the pain clinic to talk about the medications we were on, and their benefits and drawbacks.

I felt a little sorry for the lady from the pain clinic who was brought in to tell us about the medications. As a group, we already knew a lot about the different types and their side effects, and to top it all off I had a more up-to-date TENS machine than the hospital so I ended up doing the demonstration instead!

I would advise anyone asking about their medication to take it along with them. There are so many brand named drugs that it was impossible for the people there to know exactly what they were and what they contained without checking first.

I found the explanations about pain and how the pain message reaches your brain, and exactly how the pain relief works absolutely fascinating, in a way it help so I can visualise what is actually going on when I take the painkillers, or use my TENS machine.

The occupational therapist gave a lot of advice about pacing your activities and a stern lecture about not sitting in one position for too long, something I know I am guilty of. When it hurts to move it can be difficult to motivate yourself to stand up and walk around, but she was right, you do tend to stiffen up if you do not move occasionally. We all had to work out how long we could sit, stand and walk for and had to mark the times on a wall chart. We were regularly reminded when we got engrossed in the discussions that we should have got up and moved 10 minutes ago! I will admit that I have found this difficult to stick to, now I have finished the course. It is all too tempting to wait until I have finished typing etc before I move: then I look up and realise that I’ve been sat here for two hours.

One of the most helpful aspects of the course was a discussion we had on self-esteem. I always felt very self-conscious that people saw the syndrome first and me second, probably because at that time I did feel it was invading my body and taking over my life, so really I saw the syndrome first and me second. I treated the pain as a separate part of me, by sectioning it off I thought I was coping, but I was only giving the pain its own identity. Now I have accepted it is part of me I do feel a lot happier.

We had to think of someone we knew and liked and draw a pie chart filling it with aspects of their personality and what importance those aspects had to us. We listed things like humour, common interests, helpfulness and generosity of spiritetc., to make up the chart. It was then pointed out that we had not listed anything about that person’s physical capabilities at all, so why should they be judging us on ours? It really hit me at the time, and when I am feeling down because I can’t go bowling or clubbing it does help me to go back to that chart and remind myself. I have friends who cannot go out in the evenings due to lack of babysitters etc., and I don’t think any less of them, it’s really not that different. I think this was the day of the course I got the most from, just that half hour session changed the way I view myself completely.

I did not gain a great deal from the physiotherapy side of the course. Various types of exercise were used, ranging from stretching exercises (they hurt), to sitting on big rubber balls (I fell off!) and even line dancing. I did like the sessions based on a modified form of Tai Chi and have since bought a book and a video, but since the course my shoulders and back have weakened and I find them too painful at the moment. I did find it a very calming and enjoyable form of gentle exercise.

There was great emphasis on your having chronic pain, so not being able to cause further damage by exercise, again hypermobility syndrome with its chronic and acute pain was not catered for. I do not mean to sound overly critical. I did try quite a few different types of exercise on offer but I was nervous of doing too much with a physiotherapist who admitted she didn’t know much about hypermobility syndrome, and who had not seen my medical records. I still feel it is worthwhile to attend something like this, and to keep an open mind, but realise that you may know your body and your condition better that the people running the course and not let yourself be bullied into exercises that you know will damage you. We ended in a compromise that I would sit and watch and only join in with those exercises that I felt were safe for me. The physiotherapist had never seen my medical records, or treated anyone with Hypermobility Syndrome before, so it was not fair to make her take the responsibility for my health, which I knew better.

Every session we had half an hour for relaxation techniques, which I found to be a little too relaxing at times, I must admit I sometimes use them when I cannot get to sleep, not the intended purpose, but very helpful all the same! We covered subjects like breathing for relaxation, which I found difficult to do (no co-ordination!), and visualisation, as well as distraction strategies and positive thinking.

The course ran over 6 weeks, for two mornings a week, I had no idea how tiring it would be. I still work more or less full-time and thought I could do the session in the morning and an afternoon’s work afterwards. I had not planned properly for long walks across car parks and hospital corridors to get there, and how emotionally tiring it would be talking about your self all morning. Normally we put a brave face to friends and family. It was very therapeutic (if tiring) to sit down with others in pain and be able to talk about it without feeling guilty about dragging people down, or being seen as moaning.

Overall I found the course beneficial, but it was orientated to those with back injuries causing chronic pain. It would be wonderful to see a course like this designed especially for us, people who suffer from chronic and acute pain, in more than one part of the body, with physiotherapists and specialists who know about Hypermobility Syndrome. I would encourage anyone to ask at their pain clinic, rheumatology clinic etc if they run something similar, it was hard work to attend all the sessions but I found it very worthwhile.

Nicki Jefferies

HMSA Summer 2001 Newsletter