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If you think you might have fibromyalgia, you really have two problems: the syndrome itself, and doctors who don't take you seriously. In fact, it's hard to find anyone who understands - most people cannot imagine chronic pain unless they have experienced it. This page is for: anyone struggling with this problem, or who are trying to understand someone who has it. It is also for doctors who ... just ... don't ... get it. This is my experience with chronic pain: Several years ago, I'm at the office. There is a rumbling overhead as the ceiling caves in. Everything is dust and bricks, wires and pipes. Slowly, the dust settles. I can see sky above, and everything hurts. I am covered with cuts and bruises and my legs are in agony. For a long time I lie on my back, unable to move, absorbing the fact that my legs are crushed under tons of bricks. I hear sirens and voices. My legs throb. A long time goes by. I wake up, realizing that physical pain has intruded on my dreams again. Everything hurts, my legs worst of all. I take slow, deep breaths. I am so tired, I need to sleep so badly, but there is so much pain. Finally I get up, put on a robe, and go see if the morning paper has arrived. It is usually delivered around 3:30. I pour a large glass of water and sit in the breakfast nook, reading the day's news. My legs hurt so much. It is going to be a long day. I change jobs. Maybe the change of environment will help! I like my new job much better than the old one, but my condition worsens. Sometimes I stagger when I walk. I buy a cane but cannot bring myself to use it. I cannot sit in a chair for more than a half hour at a time – not helpful for working at a desk. Stairs are impossible. I can't travel. At the office, I am talking to one of my co-workers. She is speaking and I am trying to focus on her voice, to pour all my attention into her voice. My entire body hurts. I can feel the pressure of my belt against my hip bones. My legs feel as if they had been bound in strong ropes and circulation had been cut off for hours, then just released. "Concentrate," I tell myself, "Don't fall." I try to follow what my co-worker is saying. She seems so far away. I am trying to hear her over the noise of the pain. It feels as if any minute I must fall to the carpet, but I do not, will not. This happens almost every day. My boss is concerned. He tells me, "You don't look good" and wants to know if there is anything anyone can do to help – an accommodation, perhaps? I am grateful for the understanding but have no idea what would help. Pain relievers don't help. The doctor prescribes something to help me sleep, and it helps a little – but then I can't concentrate the next day. This has been going on for 6 years. One doctor after another checks for arthritis and says there is nothing wrong. A chiropractor promises help but there is no improvement. I try a French nutritive medicine that is supposed to help, but does not. Sleep is so difficult because even the slightest pressure is painful. My body against the mattress, the footstep of a cat, anything. The weight of blankets hurts. The slight pressure of my head against the pillow, hurts. And most of all, my legs hurt. Over my wife's protests, I buy a special Swedish mattress, and it helps a little. My wife is annoyed. She thinks it is my fault, that I am doing something wrong. She wishes I would just stop. I find a muscle specialist. He has me fill out the most detailed questionnaire I have ever seen, and performs a kind of examination I have not experienced before. Then I go for (more) x-rays and blood tests. "You have acute migratory fascitis," he tells me. "It is a chronic pain disorder that usually doesn't respond to medication. It is similar to fibromyalgia, or it may be the same thing. No one knows what causes it, and there is no cure. You will have to learn to manage it." He gives me a "white paper" he has written on fibromyalgia, and another on managing chronic pain. He prescribes a round of physical therapy, or "PT." In the three years following that diagnosis, I learn to cope with aggressive physical therapy and exercise and, if you will, a philosophical adjustment. I go through many rounds of physical therapy as another year goes by. My physical therapist is from New Zealand, and sounds like "Crocodile Dundee." He explains that aerobic exercise multiplies blood flow through the muscles fivefold, and that it helps my specific disorder. He teaches me specific exercises and stretches. I join a gym. At first, all I can do is walk back and forth in the pool. Another year goes by and I gradually become stronger. The nights of agony are less frequent. Sometimes a week goes by, and I do not have the dream. I am still desperately tired. I make dietary changes so I can exercise for longer periods. I push hard. Improvement continues. It takes two or three hours each time at the gym – warm up, stretching, aerobic, cool down, stretching, lifting weights, stretching. Each session at the gym controls pain for about 48 hours. I go Tuesday, Thursday, Saturday, and Sunday, spending a total of about 12 hours a week. As a side benefit, I begin to lose weight. I drill new holes on my belt, and use clothes that have been hiding in my closet for a long time. As I become stronger, I can do more. I make a point of going up stairs, sometimes two at a time. It isn't a painless experience, but it is very satisfying. I begin to see what the specialist was talking about. The pain is always there, but I can manage it, minimize it. A second source of suffering is the thought of unending pain. I begin to read the teachings of Buddha. I learn about the Four Noble Truths and the Eightfold Path. I learn that my pain, and my suffering are different things. Physical therapy can help reduce and control the pain, but eliminating suffering must come from within. I suffer because I desire something I cannot have: cessation of pain. The desire, not the pain, is the source of my suffering. In a few months, I will be 46 years old, and must reacquire the mind of the beginner. I begin to meditate on compassion for others, for myself. On love for all beings. I read small bits of Buddha's teaching, turning them over in my mind for weeks. On combining practical efforts with awareness. If someone asked me how to be a Buddhist, I could not answer. Buddhism is practice – there is no ceremony of initiation. Call it a religion if you like, but you can be a Buddhist without any supernatural beliefs. Call it a philosophy if you want to, but most Buddhists believe in reincarnation. (I do not, but if I am wrong, perhaps I will believe in it in the next life. Buddhism has no Vatican checking on the correctness of belief.) This all started with a chronic pain syndrome. Where it is going, who
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