Pain clinic

by Mary Campbell

This is a cautionary tale - the story of one CFS/FM sufferer's experience at a multidisciplinary pain clinic.

The methods used in such clinics include graded exercise and cognitive behaviour therapy, so the program Mary took part in was very similar to the sort of treatment recommended in the Royal Australasian College of Physicians' Clinical Practice Guidelines for CFS.

• More information about multidisciplinary pain management and the "bio-psycho-social" explanation for chronic pain and illness.

Mary's story

'I am 19 years old. I have suffered from Chronic Fatigue Syndrome for ten years and Fibromyalgia Syndrome (from which my pain arises) for five years. When I tried the Pain Clinic I thought that if I could slow or minimize the pain, I would be able to do more, even though I would still have the tiredness and symptoms of the Chronic Fatigue Syndrome. I did not understand exactly how increasing my exercise would help me, although combating deconditioning in an otherwise healthy person made sense.

I attended the Pain Clinic for an assessment, in the hope that I would shortly begin the three-week intensive clinic, and through attending that clinic I hoped my activity level would increase. I was unsure of exactly what these three weeks would involve, and how exercise would reduce my pain level.

First I saw the doctor who was polite and attempted to answer my questions. He explained the latest research into the mechanisms of pain in a straight forward manner, which I found very interesting. Next I saw the physical therapist, who did not have an inviting bedside manner. He asked me questions about my activity level and then examined me, prodding and poking me.

Finally I saw the psychologist. She asked me many questions, and I found her rude and arrogant in her approach. She made comments to which I took offence and then offered me a place in the Coping and Life Skills Group, which met once a week for two hours for eight weeks. I asked her about the three-week intensive program and in essence she said I might have a chance of getting a place in the course, but only if I attended the life skills group first. I did not believe I needed psychological help, and therefore did not wish to attend, although in the end I went in order to be offered a place in the three-week course.

... I object to the implication
that I was depressed ...

I have since learnt that the Coping and Life Skills Group had previously been called the "Depression Group", and I object to the implication that I was depressed. I admit I was not entirely happy, but that was due to the condition I was in, which meant that I was unable to do activities other people my age could do with ease, and I was living with pain. However this did not effect my motivation to do as much as I could, such as school and exercise and seeing my friends. This had to be done within my limits, to prevent my health from declining.

There were ten people in my group, varying in age (I was the youngest at 18) and length of time having suffered chronic pain. They had chronic pain from past injuries and operations. We had two intern psychologists running the group sessions. While I already practiced many of the coping skills recommended, the course confirmed that my techniques were right. I found by talking about my experiences with pain, I was able to reinforce what the interns were saying to the others. The information was valuable, but as I was familiar with the majority of it, hearing it again was not particularly beneficial. However I did find it interesting when the doctor visited us and explained about pain in depth. We also had a visit from the nurse during which I took the chance to inquire about the medications I was on, and other medications I was curious about.

At the conclusion of the course I was asked if I would still be interested in the three-week course and I answered yes.

I started the course and put all my effort into trying the program's methods for improvement. The aim was to reduce pain levels, and increase physical, recreational and social activity and improve overall health. This required increasing my activity five-fold, from attending school for eight hours a week to attending a full time program, from 9 am-3.30 pm.

There were eight people enrolled in the course. The people were similar to the Coping and Life Skills Group. A typical day was, twenty minutes stretching, a lecture on the human body, then morning tea for twenty minutes. Then we had one hour doing physical activities, usually a maximum of five minutes on each. You could choose from going on an exercise bike, standing on a wobble board for balance, going on a treadmill, going up and down stairs, a 20 metre walk, sitting and standing, etc. We had to time ourselves, and measure our achievements on each activity, from heart rate to distance.

Then we would have a lecture on stress, followed by lunch, for one hour. After lunch we had a twelve minute walk. With a stopwatch, we would walk outside for six minutes one way, and then six minutes back. This would be followed by a lecture on positive thinking, and then strengthening exercises. These were lifting weights and other specific strengthening exercises. Then we would have a lecture on depression, and then we would finish off with a relaxation exercise.

Each day had the exercise component, but the lectures varied. We had visits from a nurse, doctor, psychologist, dietitian and occupational therapist. We had lectures on muscles, deconditioning, posture, lungs, diet, medications, pain, surgery, breathing, relaxation, leisure, physical aids etc. Also, we had individual appointments with the Doctor and the psychologist, after 3.30.

The information was comprehensive, and fascinating.

" the pain made me cry and my body
shook. I could not balance or focus "

For the first week I pushed my body to keep up with the others attending. My pain levels and fatigue worsened.

In the second week, determined to give the program my all, I continued to push myself to complete each day, although by this stage my body was weakening. I was slowing in my 12-minute walks, and unable to complete many of the exercises. I began to sleep at lunchtimes and rest during some lectures (which I had already covered in the Coping and Life Skills Group). Even though I was cutting back, I was still at my limit. I can recall nearly passing out a few times (other people at the hospital inquired whether I was okay, because I was pale and dizzy).

During the second week many of the symptoms I had encountered previously (each separately) increasingly occurred and worsened.

None of these symptoms was mild. The toll on my body finally climaxed on the Friday of the second week, where the pain made me cry and my body shook. I could not balance or focus and I became freezing cold. I went from wearing shorts and a T-shirt for the two weeks to wearing pants and a coat and I had blankets over me and I was still shaking from the cold. There was no change in room temperature.

Over that weekend I slept, only to get up for food, drink and to go to the toilet.

I decided the only way to complete the third week would be to cut back. Some days I did not walk, and when I did it was only about 100m. For the exercise activities, I only went on the wobble board, or did nothing at all. Still I was exhausted and in pain and suffering from other symptoms. I rested through many lectures and at lunch and morning tea.

For the first week after the course I stayed in bed, except for one trip to organize my classes at school. I returned to school, to my two subjects, and struggled the way I hadn't for three years. I managed to push myself through the end of term and achieved lower results than I had prior to attending the Pain Management Program.

I have not returned to school since. For the next 10 months I was only able venture out for one hour every three days or so, but even then I would pay for that activity with pain and time in bed.

" clearly I did not want to get better ... I should ignore the tiredness and pain "

The staff at the Pain Clinic were unsympathetic to my symptoms. I approached the nurse to inform her that I was decreasing my activity in the third week due to the way my body reacted on the Friday, and sleeping all weekend. She implied that the fatigue wasn't real, and the proof was that I was in the room with her. She said that if it had been a long weekend I would have slept on the Monday as well, but since it wasn't a long weekend, I was up and about. She implied, if I wanted to be active I could, that it was in my head. Somehow I found the strength to cut back as I intended, otherwise I would possibly be bedridden at the present time.

Due to significantly cutting back on my involvement I was approached by the physiotherapist, to whom I tried to explain the symptoms and the reasoning behind my decision. He responded that since the doctors could find nothing physically wrong with me, it was psychological, and clearly I did not want to get better and I did not want to improve my health and combat deconditioning. He believed I should ignore the tiredness and pain, and keep on going. He told me he believed Chronic Fatigue Syndrome is psychological.

" I am slowly rebuilding my
confidence and self esteem"

The two most unpleasant aspects of the Pain Clinic were the symptoms and the way I was treated by the staff. Their attitudes of disbelief flowed through to the other people attending, and I felt isolated and helpless. I found it particularly difficult because I was hoping and expecting to receive help from the staff. This is an attitude that needs to be combated in the wider community, not only in regards to people with Chronic Fatigue Syndrome, but also those with chronic pain. The staff believe chronic pain is real. Part of the program addresses the disbelief towards chronic pain in society, and how to cope with these views from colleagues and friends etc. Unfortunately they clearly do not believe that the physical pain and fatigue suffered by people with Chronic Fatigue Syndrome is genuine. I did not expect to have to defend myself against this disbelief.

In 1993 a study was conducted of people with Chronic Fatigue Syndrome. 265 questionnaires were returned, with questions ranging from symptoms to age and duration of illness.

"Although concern and frustration with those who do not believe in CFIDS was reported by almost all respondents, there were very few coping strategies specifically geared to overcoming it. Ms McKenzie said that this frustration indicated a widespread social pattern; in many ways, the most stressful aspects of the disease resemble problems seen in more commonly recognized forms of oppression such as racism, gender bias, homophobia, etc. She observed that one could look at these issues in terms of social stigma, isolation, economic oppression, trivialization, political disenfranchisement and internalized oppression." The CFIDS Chronicle, Winter 1995

From the initial assessment until a year after the three week program I had to fill out psychological questionnaires. These frustrated me from the beginning because they had many questions that did not apply to me, and therefore my answers were unreliable. Each time I would answer them I guessed which answer would be appropriate and I am sure I interpreted the questions differently each time. They do not clearly represent my ability to cope, and I do not believe they represent my psychological state after I attended the three-week course. I am slowly rebuilding my confidence and self esteem since that event.

I would like to make some comments on the course in general.

I understand the concept of having emotional barriers to exercise and relieving chronic pain. I also understand the idea of deconditioning. These are significant contributors to the extent that people suffer from chronic pain. The underlying concepts behind the pain unit are valid and important. However I believe the Pain Clinic's approach to treating and managing, or minimizing these factors is inefficient and in some circumstances harmful.

While all who attended were in pain, everyone is different and having one program that has little flexibility is not appropriate. When I attended the Pain Clinic there were eight people in my group and it is clear that each person had different problems, and the severity of those problems varied greatly.

For example: two of the women clearly had some level of depression. They both had low self esteem and found attending the Pain Clinic helpful. The psychologists gave them new ideas and helped them mentally. Having other people with similar problems attending, supported them. Having the staff talking sternly to them and telling them what to do prevented them from quitting, which they were inclined to do because of their low self-esteem. Due to their mental attitudes and problems they had not developed many coping techniques. One of these women had Fibromyalgia though she did not seem to suffer the fatigue that often comes with this condition. There was a considerable improvement in both women's lifestyle, attitude and pain by the end of the three weeks. Their activity level had risen and they found it far easier to cope with daily life.

A couple of the men in our group were already managing most aspects of their life and had average activity level prior to attending the Pain Clinic. For them all aspects of the program were informative and helpful. They were not spoken to sternly because they were able to complete the majority of activities and were open to trying new suggestions.

" The attitude of the medical staff
was unsympathetic "

One man attending the program had many different health problems. Before attending he had a low activity level, far less than six hours a day, five days a week. He would sleep in the middle of each day. He had developed many ways to cope, this being one of them. By the middle of the day you could see in his face he was very tired and in pain. He was spoken to as sternly as the women when he tried to rest. The attitude of the medical staff was unsympathetic. While some of the ideas helped him, the sheer volume and intensity of the program increased his pain and fatigue. He missed afternoons and a couple of days. The medical staff at the Pain Clinic need to recognize that, when people are in so much pain that they cut back on the hours they attend, continuing to push them to participate and increase their exercise level can only be counter-productive. I believe he was worse off after the program and did not benefit as much as he could have from of the course because of the toll that attending took on his body.

Some of the lectures at the Pain Clinic were very valuable. I believe the lectures showed other people valuable ways of coping with pain and improving their quality of life. There were lectures on topics which are basic and everyone with pain should know about such as understanding our bodies, the latest research on pain, knowing more about medications, deconditioning, the importance of exercise and questions to ask if thinking about surgery etc.* However, I recommend people with CFS ignore the emphasis on exercise.

People with Chronic Fatigue Syndrome need to manage the amount of exercise they do so as not to relapse or become worse. CFS affects people to varying extents, and an amount of exercise that is fine for one person, may not be appropriate for another. There are also different stages to CFS, and the amount of exercise done needs to be adjusted accordingly. People with CFS and others with chronic pain also need to balance exercise with other activities, such as work, family, hobbies, etc. so they can live a more rounded and fulfilling life.

Yes, I do believe that the methods used at the Pain Clinic work for some people, although if they were more tailored to the individual they could be more successful. For me, they have caused me to relapse back to the ill health of three years ago. I do not believe the program I attended is appropriate treatment for anyone with CFS.

Other Pain Clinics and rehabilitation centers have similar programs and philosophies and I caution anyone with CFS thinking of attending one.

- Mary Campbell, June 2002

* Some of this information is in the books: Manage Your Pain by Dr Michael Nicholas, Dr Allan Molloy, Lois Tonkin and Lee Beeston, from the University of Sydney Pain Management Centre (ABC Books, 2000); and Mayo Clinic on Chronic Pain by David W. Swanson, MD (Mayo Foundation for Medical Education and Research 1999).

Top

        Webmaster      last revised 1Sept 2002