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Part 3
A "new life"
Moira’s walking blues
Exercises that work for back and knee pain
Pain problems and the medications that have helped
At first just stopping work was such a relief—a chance to rest, with no pressure to perform. Well, that’s how it should have been. Actually, the process of leaving my job—applying for the Disability Support Pension, dealing with my bank, the personnel department at my work, and Social Security, turned out to be very complicated. It required much paperwork, many phone calls, and a great deal of organisation.
Some of this business could be conducted from my bed, but I had to visit the
bank, credit union, Department of Social Security and so forth in person. Even
though mine was a straightforward and, I’m glad to say, successful pension
application, there were still documents to produce, forms to be filled in by
my doctors, and then the stressful interview with the Commonwealth Medical Officer.
To get the rebates I was entitled to as a disability pensioner, I had to visit
the electricity office, rates office, and motor registry, present my pension
card and fill out more forms.
While I got my finances sorted out, I read all the information I could get hold of on coping successfully with Fibromyalgia. Although I still felt terrible, I believed that fairly soon, after a period of resting and taking it easy, I would recover some of my energy and be able to work again—certainly part-time, if not full-time. I told myself my health was bound to improve without the daily pressure of work, and in the meantime I would approach my new situation positively. Instead of feeling sorry for myself, I would practice acceptance and see my illness as an opportunity for growth, just like it says in all the books.
Looking back, I can see now it still hadn’t really sunk in. Perhaps this was because, officially, I was leaving work voluntarily. The Public Service was ‘downsizing’ at this stage and many of my colleagues were offered redundancy packages. I had applied for one, after careful consideration, months before, thinking it made sense to pay off as much of my mortgage as I could in case ‘one day’ my Fibromyalgia made working difficult. My plan at that stage had been to keep working until the very last moment, then take my payout and have some time off before looking for a new job. I hadn’t anticipated that by the time my package came through I would already have been on unpaid sick leave for several months.
I honestly imagined that life would go on much the same, the only difference being that I would be doing different things, and having more time to myself. Determined not to become isolated and depressed, I constructed little programs for myself, planning something to do each day. I got involved in helping run the local Fibromyalgia Self-Help Group; I sewed curtains for the kitchen; I started work on my website; I visited people; I exercised. (Please note that this doesn’t at all resemble the medical experts’ scenario of people with Fibromyalgia happily embracing ‘illness behaviour’ and looking for an excuse to withdraw from life.) I was following advice like crazy. There is always plenty of advice for people like us. It is well meaning, but not always helpful, as the next part of my story illustrates.
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I have been walking 20 minutes, 3-4 times a week, for 10 weeks now and all that has happened is I have "progressed" from being able to do the walk reasonably comfortably, to hobbling like an old woman. (email to a friend)
One piece of advice I was getting, not only from books but also from my GP, was to do aerobic exercise, especially walking. It is the standard recommendation for Fibromyalgia Syndrome. It combats depression, promotes the healthful sleep we need, prevents deconditioning, and decreases pain. Or, so the story goes.
So when my doctor advised taking up walking again as a treatment for Fibromyalgia, I really didn’t feel this was the answer to my problems. But I decided to give it a really good shot. If this didn’t work, it certainly wasn’t going to be my fault.
I started walking again three or four times a week before breakfast. It was spring, the gardens in my suburb were lovely, the early-morning air invigorating. I had been told to start with an easy distance so I opted for 15-20 minutes’ worth, which at that time I considered a short walk. I was able to walk quite vigorously and felt I was getting a good aerobic workout. It felt great. It was only in the last five minutes or so that I got a bit sore and tired. However, I had been assured that ‘even if it hurts, it can’t possibly do you any harm’. I anticipated that, as my fitness increased, I would be able to increase the distance.
But something was wrong. As the weeks passed, instead of getting easier, the walk became progressively more difficult and painful. It took longer, not because I increased the distance but because I was walking more slowly. I developed new pains deep inside my hips, and my knees were more sharply painful than they had been before. After a few weeks, I decided to my take pain pills before setting out, instead of later with breakfast, so that they would be starting to work by the time I got home.
Why do I do this when it’s obviously doing me nothing but harm? Possible answers: 1. EVERYONE says it is good for me and what I should be doing. 2. I can tell my Drs that I am being a good girl and following their advice, and so win points that I can trade for their ongoing co-operation and good will (including pain meds). 3. I can rest (mostly in bed which is where my body says it wants to be) for the remainder of the day with a clear conscience. (post to the alt.med.fibromyalgia newsgroup)
Eventually I reached the point where I was sore and tired within three or so minutes of starting out, and was walking unevenly and bent over, like an old woman who had lost her Zimmer frame. I was glad not many people were around at that time of the morning to see me in such a state. By the time I got near home, I could barely put one foot in front of the other. It seemed obvious that one day soon I would end up sitting on the kerb, unable to make it any further.
The problems didn’t end when I got home from my walk. Getting up after bending became more difficult than before, and I started having trouble climbing stairs. Shopping became a new nightmare. I would be in such visible agony as I waited in the checkout queue that the staff actually started asking if I was OK. Then came a day when, in the middle of a busy shopping mall, I was in such pain that I had no idea how I was ever going to get out of there—let alone walk miles through the car park to my car. I had visions of having to be carried out on a stretcher. Although I did eventually make it under my own steam—walking slowly and painfully, with rest stops along the way—it was a scary experience.
After that, I stopped the walks. It was alarming to find that my physical condition had deteriorated so quickly in such a short time. I was now more disabled than before. Instead of being able to walk as far as I liked (which I always could before, despite sore feet) I was now strictly limited. I bought myself a walking stick, and my GP signed a form that qualified me for a disabled parking permit. Shopping trips had to be carefully planned to ensure I could make it back to the car in reasonable shape. No detours allowed ... and I could visit either one end of the mall or the other, not both in one trip.
The walking program was a big mistake, and I wish I had stopped earlier. Maybe it works for some people with Fibromyalgia, but I do feel they are in the minority. Since then, I have been more careful. I have listened to my body, instead of to other people and to the voice in my head that blames me for being sick. I found other ways of exercising—gently (but not aerobically), just to keep my muscles from atrophying. I really miss that wonderful feeling of using my body in a healthy way. But there are so many things to miss when you get a chronic illness, aren’t there?
Not long after this experience, I read an article called ‘Prescribing Exercise for Fibromyalgia Patients’ by Sharon Clark of Oregon Health Sciences University. She wrote: ‘The level of fitness of Fibromyalgia patients can be improved with a properly prescribed endurance training program that does not exacerbate a flare in symptoms.’ However, her approach was very different to a simple instruction to the patient to go out and walk: ‘Proper prescription is the key element.’
By ‘proper prescription’, she meant also careful supervision: every pain that develops is investigated and treated (eg with trigger point therapy), and adaptations may be recommended (eg to alternate walking with bicycling, or divide the exercise sessions between morning and evening). She also emphasised the importance of identifying when the pain that develops during exercise is not merely due to Fibromyalgia, but is myofascial and should be treated with trigger point therapy. She concluded, ‘...it is necessary to determine the combination of the intensity, duration, and frequency that will be best tolerated by the patient.’
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I am not against all exercise for Fibromyalgia. Fortunately I found something I could do within my limitations, and it proved much more effective than I could have hoped.
After my experiences with walking, I worked out what had gone wrong. I had been given a program that was unsuitable for me, by someone (my then GP) who wasn’t experienced enough to prescribe or monitor it. And when my body complained, I didn’t listen—that was my mistake.
I now knew I couldn’t walk far or do vigorous exercise—but I realised that I would have to find another way to preserve as much function and muscle strength as I could. So I decided to consult a physiotherapist. Here I got lucky. The physio I chose - Gordon Waddington - turned out at the time to be doing research with the local hospital on rehabilitating what is called ‘the elderly falls group’—older, frailer people who have broken a hip or similar. So he understood how to work with people with physical limitations. His advice was that I should be focussing on the stomach, chest and back muscles used in maintaining posture (‘core strength’). They’re the muscles that lose strength if a person has to spend a lot of time lying down or reclining, as I did.
He recommended some simple exercises to be done sitting down (oh bliss!) on a piece of equipment that looks like an oversize yellow beach ball. I had heard of these exercise balls, and knew they were used in rehab clinics and old people’s homes, which was reassuring. My physio told me that just sitting on the ball would be good for me, as the tiny movements I would have to make to keep my balance would gently exercise the back and stomach muscles. The actual exercises he gave me to do are little pelvic tucks and thrusts, moving my hips back and forth, and then from side to side. With the ball, you can do things like this sitting down because, unlike a chair, it rolls beneath you, while still supporting your weight. They are quite fun to do, and use very little energy.
At first I couldn't see how these very small exercises, done in such short sessions (five to ten minutes, ideally every day or twice a day at first) could possibly make any difference. Left to my own devices I would probably have given up. However, at this stage I was having regular appointments with my physiotherapist so he could check I was doing the exercises properly, and fine-tune the movements if any of them hurt (I believe this is very important). So I was kept going through a mixture of guilt if I didn't do them and encouragement from my physio, who kept assuring me he could see a difference in my performance.
Then one day I went out to sweep the courtyard—an activity that always brought on a bout of lower back pain. In fact, I was resigned to having to lie on the sofa afterwards in some agony taking extra pain pills. This time, there was no pain. That's when I realised these exercises were really working. This was hardly a keep-fit program, but the lessening of pain in some of my problem areas really improved my quality of life.
The yellow ball sat in the living room—it was too big to put away out of sight, a definite advantage. I often sat on it and did a few hip thrusts on the way from my bedroom to the kitchen at snack time, on bad days when I felt like staying in bed.
I went to the same physiotherapist again the following year when I developed a new problem with my knees, which I assumed was arthritis. I was getting excruciating pain every time I bent down or tried to straighten up again, and it was very disabling. At the Buddhist centre—where one normally sits cross-legged on the floor—people were having to help me up, or I had to haul myself up with my walking stick, and even then it was real agony.
My rheumatologist told me it was a condition called Patellar Femoral Pain Syndrome, chondromalacia, or ‘runner's knee’. Apparently, my kneecaps weren't ‘tracking’ properly, so they were rubbing against the wrong places inside my knee and causing inflammation. He said that it was inoperable, but ‘strengthening the muscles would help’—I couldn't see how. But I went back to Gordon, who knew exactly which muscle to work on, and gave me a simple exercise to do daily.
Once again, I was sceptical, and it was tough to keep doing the exercises at first (these ones are knee bends in a standing position, and a bit more strenuous). But, three to four months later, I really noticed the difference, and to this day (years afterwards) the disabling pain has not returned. My knees only get sore now when I've been sitting cross-legged for a long time, and that's a reminder to get back into my exercise routine. I'm so grateful. I would be in so much pain every day if I hadn't consulted this professional.
I think it is important to have a physio or other qualified person prescribe any exercise to suit particular needs or problems, and make sure you are doing them properly. I have a feeling that people with Fibromyalgia are particularly vulnerable to soft-tissue injuries that don't seem to heal up the way they would in a well person.
I also started going to hydrotherapy sessions, run by the local Arthritis Foundation, several mornings a week. Fortunately the pool—in the hospital rehabilitation department—was not far from where I lived. The wonderful comfort of the warm water was worth the effort of getting there at 7am. I would do some gentle exercises and often fall asleep in the water. When I got back home again I would make breakfast, take it to bed and stay there. I found that although it was sometimes tempting to go to the supermarket on the way home, to save going out again later, it was not really a good idea. It was too much and wore me out.
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I have had pain since I was a child. When I was only eight or so, my father took me to an optometrist to get my eyes tested to see if vision problems were the cause of my headaches. At times the headaches got so bad that I had to go and lie down in the school sickroom, or stay off school altogether. When I was in my teens, I started getting neck and shoulder pain with the headaches. I resigned myself to the fact that I would often have this pain, especially when travelling, socialising, or in any situation that combined a certain amount of stress with physical tension (and sometimes for no apparent reason at all). I felt it was rather unfair that any event that was supposed to be ‘fun’ was also pain-provoking, but I got used to it and put up with it. Before going out at night, I'd take pain pills and I'd always have a supply in my handbag for later.
Thanks to the writings of Devin Starlanyl, I now know that this pain is caused by myofascial trigger points, which are frequently, and chronically, associated with Fibromyalgia. I have regular therapy to manage my condition, and it really helps. But in those days, I had no explanation. I also didn’t know that people who suffer from Fibromyalgia are unusually sensitised to pain from any source. The phenomenon is known as ‘wind-up’, and is said to be due to central sensitisation of the nervous system. (For me, this theory is supported by the fact that I have several times been in appalling pain after surgery, despite ‘normal’ doses of drugs, and the nurses and doctors appear to have been surprised by this.)
Over the years, I had tried all sorts of therapies for my head and neck pain, including osteopathy, chiropractic, Alexander Technique, Tai Chi, nerve blocks and relaxation techniques. But what I relied on most was a ready supply of the strongest possible over-the-counter painkillers and, later, the prescription drug Voltaren (an anti-inflammatory). I also found that Xanax (alprazolam—a benzodiazepine tranquilliser which not only helps me sleep but also has muscle-relaxant properties) could be very helpful, especially when taken in a ‘cocktail’ with painkillers.
After suffering neck and head pain for years, I should have got better at managing it, but somehow that didn't happen. Even in my younger days, the pain caused me to be off work at times. In the years shortly before and after I was diagnosed with Fibromyalgia, I had several frightening experiences when the pain just got worse and worse, and I felt completely helpless and afraid. The year of my diagnosis, I had to call a doctor out in the middle of the night to give me an injection of pethidine. To be in that much pain, with no end in sight, is terrifying. When the pain got that bad, I couldn't rest or relax, and I couldn't take my mind off it by thinking of other things. I ended up just walking round the room in agony, or sitting down and rocking to and fro. When the pain finally eased, I was exhausted.
After I stopped work, I hoped things would improve. But, a few months later, the pain throughout my body had increased still further. The worst pain was, as usual, in my head and neck—it was now almost constant, with frequent very severe episodes. I remember one occasion when I was supposed to be going to the National Gallery with my father (who was visiting me at the time) and a friend. On that particular day I was in such agony, there was no question about my taking part in the outing. My father and my friend ended up going, but I stayed home alone. My father commented afterwards that he had seen my mother in the throes of pain from Trigeminal Neuralgia—widely acknowledged to be among the most painful conditions a person can suffer from—but what I seemed to be going through appeared to him to be even worse. (My mother ended up having successful surgery for her Trigeminal Neuralgia.)
My GP was now suggesting trying yet another anti-depressant for the pain (since the others hadn’t worked), and reluctantly writing me prescriptions for not enough Digesic or Panadeine Forte, and not enough Xanax. There was a battle every time I went to see her. She was suspicious—and rightly so, because, in an attempt to get as many prescriptions as possible, I was being deliberately vague about how many pills I was taking, and how many I had left. I don't know if she believed how much pain I was in. But I think that, because of my previous history of depression, and the way I always cried in her office while describing my pain, she was afraid that I would use these drugs for a suicide attempt. (I wonder if doctors who fear this ever stop to consider that a patient in constant under-treated pain is much more likely to attempt suicide.)
So I had to supplement the prescription painkillers I was allowed with a cocktail of my favourite over-the-counter brands. I was now taking whatever I could get hold of—basically Panadeine (paracetamol and codeine)—at or above the maximum allowed amount per day, just to get some relief. I had long ceased to pay any attention to what it said on the packet. I took the pills until they kicked in and the pain became bearable. I knew that as a result, I was consuming larger than advisable amounts of paracetemol (acetaminophen) which is harmful to the liver. But I had no choice.
It was pain that had hastened the end of my working career. And pain was now making any adjustment to life as a chronically ill person, with so many losses to endure, impossible. I was trying to accept my new situation, and see it as a ‘life challenge’. But it was hard to do this when ahead of me I could see only increasing disability, pain, poverty and loneliness. I reached a point where I felt that it was inevitable that, however hard I tried to endure, I would have to commit suicide after another year of this—or maybe two at the outside. Yet I was not having the suicidal urges and ideation that I had had in the past; I was merely assessing my situation and noting that quite soon there would only be one option. I now know that this is a common feeling among chronic pain patients.
Pain had become an incredibly emotional issue for me. I already had terrible memories of the agony I had been in after various surgeries, the lack of sympathy and understanding of the nursing staff, and my unsuccessful attempts to get adequate pain relief. (I had always wondered why the standard dose didn't seem to work on me. I now know that chronic pain patients are abnormally sensitised to pain—we actually do feel it more, and this is also a recognised feature of Fibromyalgia. See, for example, Dr Robert Bennett on central hyperexcitability, a state of disordered sensory processing in Fibromyalgia.)
The memories of these experiences, plus the pain that I now woke with every morning, and from which only a few broken hours of sleep brought relief, were adding up to make me a wreck. The irrational way I presented to my GP when I discussed pain medication issues didn't help me to advocate effectively for myself, and probably only served to convince her that I was too unstable to be reporting my pain objectively. She was certainly most reluctant to get involved in prescribing stronger drugs. We had reached an impasse where she was no longer sympathetic or co-operative, and I no longer knew how to cope or to convince her I needed more help.
I took my troubles to the psychiatrist I had been seeing, and shook and wept as he read the letter in which I had (fortunately) written down these facts. My letter concluded:
I’m afraid my life will eventually become a living hell of pain and I will get no quality of life, be unable to do anything, be totally dependent on others, constantly depressed. I want to try and do the right things but pain will prevent all that. I think this whole pain relief issue is making me more emotional and getting in the way of the work I am trying to do in coming to grips with this illness.
He understood. He prescribed methadone 12-hourly. He said he preferred methadone to morphine because the required dose was usually lower, and it seemed to help better with neuropathic (nerve) pain—something to do with NMDA receptors:
The NMDA (N-methyl-D-aspartate) receptor, in particular, is the excitatory amino acid receptor that is thought to underlie many changes seen with chronic pain ... Researchers are currently studying a class of drugs known as NMDA receptor antagonists ... experimental evidence suggests that methadone may be an NMDA receptor antagonist. 'New Analgesics Emerge From Pain Pathogenesis' Research Oncology News Vol 6, No 4 (April 1997) ]
I also learned later that methadone is singularly long acting. It's synthetic, but unlike other opiates, it does not have to be manufactured to produce a sustained-release medication. The tablets don't have a special coating, which means you can cut them in half, so it's easier to adjust the dosage by small amounts. (The sustained-release version of morphine is called MS-Contin, and OxyContin is the sustained-release version of oxycodone.)
I knew that it was a big step, to start taking opiates. You have to be assured of your supply because if you stop suddenly after you have been taking them for a while, you get withdrawals. Given the red tape involved in writing the prescriptions, and the reluctance of many doctors to prescribe them, this can become an issue at any time. But I desperately needed relief. And I was not afraid of causing damage to my body because—from my reading—I felt sure that opiates were, in fact, far safer than the other drugs I had already been taking in such large amounts and for so long.
I’ll never forget the feeling I got after I took my first methadone tablet. I didn’t get high, of course—methadone has no ‘buzz’ (that’s why it is given to heroin addicts to satisfy their opiate craving)—but I felt incredibly light. The weight of pain lifted from my body. It was like a miracle.
Then the nausea, itching and sleepwalking began. The itching was the worst—I was constantly dabbing myself with calamine lotion. If the easing of my pain had not been such a blessed relief, I couldn’t have stood the side effects as long as I did. But, they only lasted about twelve days. Apart from that, the only side effect was, initially, mild constipation. [Constipation can be a serious symptom and should never just be ignored. In my experience of communicating with people on opiates, there have been two who needed urgent medical intervention for bowel obstruction. Opiates decrease peristalsis, especially when you first start taking them. I know of no other serious side effects, but please be aware of this one.]
During those first couple of weeks on methadone, I was adjusting my dosage. Eventually I found that 30 to 40 mg daily (depending on other factors, such as my activity levels and the weather) was effective. And being on a constant round-the-clock dose meant I could stop obsessing about whether I should take the medication or try to stick it out.
Methadone made a huge difference to my life. My pain was rendered bearable most of the time, and it was treatable even when it got bad. Even after the immediate improvement when I first started taking the drug, my body-wide pain continued to settle down over the next couple of years. I still get the same neck and head pain that I have suffered from for the last thirty to forty years, but these flare-ups are less frequent and much easier to handle with a little extra medication, and the application of heat or (if it's really bad) ice. I have trigger point therapy (therapeutic massage by someone who is trained in the treatment of myofascial pain) fortnightly. The flare-ups seem to be caused by weather patterns, or overdoing it, or mental or physical stress leading to muscle tension in my neck. Sometimes I can’t identify the reason. But my pain is nowhere near as bad as it has been. I can live with and cope with it. This makes sense to me—if pain leads to more pain through the mechanism called ‘wind up’, pain relief should naturally gradually ‘wind down’ the pain. I have also read that one of the perpetuating factors for myofascial trigger points is pain.
I started taking methadone towards the end of 1996 and, as of May 2007, I am still taking it, in a very much reduced dosage. I haven't experienced any bad effects so far. My pain levels have improved greatly over this time. My brain is clearer than it used to be, and my memory is better. I’m working again, part-time.
I have done a great deal of reading about opiate medication. I am aware of the distinction between addiction and dependence. I have read that less than 1% of pain patients become addicted to narcotics, and it’s suggested that the round-the-clock regime I'm on makes addiction even more unlikely. I have also read that methadone is one of the safest drugs and does not harm any organ of the body.
As for developing a tolerance and needing more and more, that hasn't happened so far. There was a point at which my pain got worse again and I thought I might have to ask for more, but my rheumatologist recommended I try also taking Celebrex for a while—and that worked. These days, my pain is so much less that I am taking a smaller dose of methadone than when I first started. At one stage my pain levels were so low, I decided I would like to try doing without the methadone, hoping that maybe it was no longer necessary. Under my doctor's guidance, I was able to reduce the dose gradually, without the least sign of withdrawal symptoms. However, I found that at a lower dose the pain returned, and I also had terrible ‘restless legs’ symptoms which prevented me sleeping. (I’d had these in the past, before I took methadone. Apparently, opiates are one of the treatment options for restless legs when nothing else helps.) I am confident that, like most people who are using opiates for pain, when I no longer need the drug I will be able to stop taking it. And if should I need to take more in future, either because my pain gets worse or the drug becomes less effective, I also know that, because the amount I am taking is relatively small, there is room to raise the dosage.
I consider myself very fortunate to be getting effective pain relief, unlike so many other sufferers. I will always be grateful to the doctor who first prescribed methadone for me. It is surely no coincidence that this doctor was a chronic pain sufferer himself, and could relate only too well to what I was going through.
Finding a doctor who is willing to prescribe opiates is not all that easy, but fortunately becoming easier. There is a slow but general change in attitude as doctors realise that their patients are happier, more productive and better adjusted people when they get good pain relief. But in my opinion, there is still not enough general awareness about how safe and effective opiates can be.
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