(Based on a talk given at the UK conference.)
When I was asked to give this talk on the Sunday of the UK Fibromyalgia Conference, due to Professor Mansel Aylward being held up in government, I immediately flew into a panic. "Had Professor Aylward left his slides?" I warily asked conference organizer Pam Stewart. On being told that no information whatsoever was available my panic escalated. What did I know about pain management? It took Pam a while to persuade me that having lived with fibromyalgia for 12 years and having achieved a positive outlook on my life meant that I must know something. I remained skeptical, but said I would have a go and spent my long awaited Sunday morning lie-in writing a 30 minute talk. Once on the stage I began to relax. It was so dark I couldn't see anybody anyway so I could pretend I was talking to myself—something that I apparently do quite often! At the end of my talk some people requested that I summarize my thoughts and ideas into a short article, so here we go: my personal experience of pain management.
The first question I asked myself, while sitting in my bedroom at Imperial College, London, was, "What exactly is pain management?" I decided that to me, pain management is learning to manage my chronic pain and fatigue on a day-to-day basis, so that I can achieve my goals and build a life for myself that I both enjoy and find a level of contentment with. I resolved to explore how I have managed to achieve this in my life by looking at where I have come from and how I manage my life today.
I developed fibromyalgia at the age of 19 during a year out between school and university. It was very sudden and totally mysterious, completely confounding all the doctors I came into contact with. I found myself going from being a very active teenager, who spent her leisure time galloping around the New Forest on her pony, going on long hikes and camping holidays, to someone who was stuck in her bedroom, unable to walk or to use her wrists due to indescribable pain. It was a very odd and mind-blowing situation, which left me confused, frightened and in the end depressed. I became totally reliant on my mother as my symptoms increased and changed unpredictably. Nobody could explain the pain, and to make it even worse the doctors did not even seem to believe me. A lot of my time was spent railing against the injustice of life until I became angry, resentful, bitter and totally self-absorbed. Even my brother tended to avoid my company as he said I was impossible to be with. Over time I developed pain all over, with all the typical symptoms of fibromyalgia and myofascial pain syndrome. It took four years to obtain a diagnosis, in which time I had built up a myriad of psychological issues mainly directed at the medical profession. I later discovered that this story was fairly typical of a fibromyalgia patient and I am sure many of my horrible experiences have been just like yours.
Today my life is very different. The pain is more or less exactly the same; it comes and goes in a totally unpredictable manner making planning ahead a hazardous activity. Despite this, I enjoy my life and have built a daily existence in which I find contentment. I enjoy an active social life with my friends and family, my volunteer work for FMA UK, and my favorite activity, traveling the world. To get to this point I have had to employ many pain management techniques, which I have gradually got to grips with over the past eight years following my diagnosis.
The first of the skills to grasp was acceptance. My breakthrough came when I accepted what had happened and decided to move forward rather than spending each day longing for my old life back. It was not easy. I spent many months working it through with a counselor I both trusted and respected, and gradually lost my bitterness, anger and self-absorption. My counselor also taught me the skills of cognitive behavioral therapy: how to change my negative attitudes into positive ones. It was hard going, but so worthwhile—and eventually I began to see a glimmer of a future ahead of me. I still have what my mother refers to as my "doom and gloom" moments where everything feels as if it is going wrong, but they are less often now. They are mainly triggered when I am very tired and everything goes out of proportion, or when I am confronted with a large dose of frustration or boredom. I have learnt to recognize these situations and try to deal with them promptly.
Learning how to manage my pain came only when my psychological issues had been worked through, as only then was I ready to listen to anyone giving me advice on pain management. Before it had always been, "Take this pain away and I will cope fine thank you very much," whereas now I found myself asking, "Teach me how to live in this situation." Together with my GP and physiotherapist I reviewed the areas of my medication, relaxation, exercise, pacing and goal setting. My GP allowed me to try various medications to achieve the best pain relief possible. I should point out that this is my third GP since having fibromyalgia, and he was well worth finding. Also, I now understand what my GP can do for me, and what he can't, which helps our relationship enormously.
At first, I thought being advised to exercise was a joke. Why provoke more pain to cope with? Gradually I began to understand that if I became increasingly deconditioned I would only succeed in increasing my pain levels, reducing my cardiovascular fitness and making myself more prone to injury. My physio and I argued many times about what exercise I should do and I must admit that I still don't like being told what to do! From all the knowledge I gained from my patient and enduring physiotherapist, along with Sharon Clarke's specialized stretching and aerobics videos for fibromyalgia patients, I have developed my own exercise program, which suits me. The best advice my physio gave me was to do exercise that I enjoyed, as then I would remain motivated to continue. My attempts to exercise have been littered with pitfalls and flare-ups, in the normal way of things when trying to exercise with chronic pain. It is always difficult to walk the tightrope between exercising enough but not over doing it. However, my persistence has paid off. I am generally fitter and most days do some form of exercise.
The concept of pacing is a magic key when living with chronic pain. To achieve my goals I have learned to pace myself very carefully. I came to realize quite quickly that to succeed, my goals needed to be realistic; I have a definite skill for dreaming up impossible goals. If I wanted to go out in the evening I would have to have some energy left by the end of the day. I began to achieve this by being very strict with myself and by using various bits of equipment to help me in my daily tasks. I also realized that some activities are simply not worth the energy expenditure. It was amazing how often housework fell into this category; my ability to not see mess and dust are quite exceptional!
I can’t walk very far due to severe pain in my hips and lower back; for this reason I’m careful where I choose to use my walking ability. To me walking around a supermarket is not half as enjoyable as walking outside along the canal or in the park; so I choose to use my electric wheelchair, Millie, to whiz round the supermarket and then enjoy my exercise by taking a walk outside. So for me, using Millie is a method of pacing and I find I walk further knowing that the wheelchair is available to do the necessary chores. I spend a lot more of my day outside, rather than stuck in the house, so in essence my wheelchair gives me the independence I need and makes my life much more enjoyable.
Other pieces of equipment I use to pace myself and achieve independence are: voice activated software for my computer; an adapted car; and a hands-free phone. The voice-activated software allows me the freedom to write as much as I like without inducing the wrist pain I develop from the repetitive activity of typing or writing. It leaves me free to use my wrists to accomplish other tasks like washing up or arranging my latest travel photos. My adapted motability car, Molly, is totally amazing. I have a twin flip accelerator pedal so I can drive my automatic car with either leg. It has doubled the distance I can drive, as when my right leg begins to ache from operating the accelerator and brake I can switch to a left accelerator pedal and drive with my left leg (not as dangerous as it sounds!). The steering has also been lightened to put as little pressure on my wrists as possible, and installed in the boot is a hoist for lifting my wheelchair in and out of the car. All my friends adore this piece of equipment, as they no longer have to strain their muscles lifting lift it in and out of the car for me!
Relaxation is something I struggled with. My brain would simply not switch off when I lay down to rest and relax in the afternoon to conserve energy for my evening excursions. My solution came with the discovery of audio books at my local library. I found listening to books not only opened up a whole new world of adventure, but finally stopped my brain in its tracks. I now take my audio books with me everywhere to use to keep my brain occupied whenever I am really tired but can't sleep, or when I get into a state with my brain whirring in circles. I get through so many books that I have even branched into the next county’s libraries!
These are some of my techniques and solutions to living in the situation I find myself. Yours may be totally different. What is essential is to discover ways to enjoy life as much as possible despite the pain, and to build a life for yourself in which you find a level of contentment.