Fibromyalgia is another one of those mysterious diseases that seems to afflict mostly women. There’s no cure, and it’s a chronic illness that leads to a systemic, widespread inflammation in the whole body. The result is debilitating pain of the joints, as well as in the muscles and muscle fibers. Until the 1800s, there was no formal diagnosis for the disease and people who suffered from it were told they were crazy. Here is the story of how one woman learned to cope, weaned herself off prescription painkillers, and used wellness to help with her ceaseless pain.
When I turned 32 I sort of threw my back out doing jumping jacks, or at least that’s what I thought I had done. It was probably the kind of thing that if I hadn’t had fibromyalgia it would’ve just gone away but instead I was in chronic pain all over my whole body and I couldn’t figure out why. I kept thinking, Why did this suddenly happen to me? Up until then I had been very active doing exercises. I even taught yoga. I was in great shape.
After about a year of chronic pain, I got really depressed. I saw a few doctors who didn’t believe me because I was a healthy young woman with no other symptoms. They told me my pain was all in my head. It was so frustrating. One day, I was listening to the local radio and a specialist named Dr. Smoller was talking about the connection between depression and pain. I called him and made an appointment right away. This was 1982, and in those days no one called the condition fibromyalgia. He called it myofascial pain, referring to the fascia between muscles.
Dr. Smoller believed fibromyalgia was linked to depression and disordered sleep. He also speculated that it was related to the thyroid. I was a terrible insomniac and had suffered from thyroid disease since I was a small child. Aside from the relief of finding someone who took my pain seriously, I was finally on the road to getting help. Dr. Smoller measured my serotonin levels, and found that my brain wasn’t getting enough serotonin. He prescribed an anti-depressant called Elavil. I was very skeptical, but I felt so much better when I took it. I was finally able to sleep.
I had to go to work, pain or no pain. I tried patches, heating pads, ice packs. I took prescription drugs. For seven years I was given a very high dose of aspirin, which I took every day. It helped a lot with the inflammation but eventually I got major ulcers. It is a terrible thing to deal with chronic pain. When I first got fibromyalgia, especially in the first ten years, I felt total panic all the time — like I couldn’t do things everybody else was doing. It was a constant daily battle and I didn’t know anybody else with the condition.
In my 40s I decided to go to rheumatologists because I hurt in my joints and I just felt like I had arthritis. Every doctor seemed convinced that I had lupus. But I never tested positive for anything. By and by there was a new diagnosis: fibromyalgia.
At this point I had tried many different doctors over the years. I had one guy that experimented with me. I’m sure he was doing research. He gave me everything he could think of to give me. Nothing really worked. I was about to be 50, and I didn’t want to be addicted to opioids for the rest of my life. I used all my will to get off all prescription painkillers. Now I take Tylenol. I measure the amount. I’m careful.
I practice all kinds of wellness routines to stay healthy and control my illness because I know this is a chronic condition and it’s up to me to be my own advocate for my health. Having a sense of agency in controlling your health is really empowering. It’s not that I need to do one thing or another, I just try to stay in my optimal health: I don’t drink alcohol. I eat organic, no red meats, lots of yogurt, fruits, and vegetables. Actually, mostly vegetables.
I’ve tried acupuncture and it helped a bit. It would relieve all the pain, but in a way that was a bad thing because then I would get back to my life and it would immediately come back because my muscles were out of shape. Eventually I got my courage up to try going back to the gym and to my surprise I found that it didn’t kill me. I also realized that if I don’t exercise I’m way worse off. I refuse to give in to this thing even though now I’m at a point where I’m pretty arthritic.
I’ve tried meditative tapes by Louise Hay. She talked about the concept of “you are the only thinker in your own brain,” and therefore you can control your thoughts and when you control your thoughts you control your life. I also learned one technique that I did with a bio-feedback person from Dr. Smoller’s office. I would imagine parts of my body — for example, my neck when it was in pain — as a tight, tight, tight rubber band. I would imagine it going loose and slack, floppy. I was told to do that all the time. He had me put little red stickers around the house. Every time I saw them I remembered to relax my neck. Now I can do it on command. The mind-body connection was so important in helping my pain. I would say to myself: “Calm down, get a grip on yourself, and don’t panic. You don’t know what to do right now, nobody’s going to be able to tell you what you’re going to do but in divine right order you will know what to do. It will be revealed.”