Fibromyalgia is a condition (also called a syndrome, and some researchers are now wising up and calling it a disease) that causes a dysfunction of the autoimmune system so that your muscles and your nervous system do not communicate properly. It is not progressive or degenerative like Alzheimer’s or Lou Gehrig’s disease, meaning that it won’t kill me, but it can be, literally, one great big pain in the butt. And in the rest of my body as well. Depending on the degree to which a person has it, it can range from mildly annoying to completely debilitating.
For some reason, it is most commonly diagnosed in women from 30 to 50.
And currently, there is no cure.
The most commonly reported symptoms are muscle pain, sleep disturbance and fatigue, although many other symptoms can occur, mostly involving the digestive system (including irritable bowel syndrome (IBS)) or cognitive problems (usually called “brain fog,” and it really does feel sometimes like I’m walking around a foggy head). While doctors and researchers disagree on so many things about the syndrome (the cause, the treatment, even its very existence!) one firm set of criteria has stuck, established at a medical conference in Copenhagen in 1993: on the body there are a series of eighteen bilateral (one on each side) points that when pressed, are very tender. Creatively enough, these are called “tender points.” If you are sore on eleven of these eighteen pairs, distributed on all four quadrants of the body, then you are considered to have fibromyalgia.
And since fibro can mimic or be triggered by many other, scarier diseases like Lyme or hepatitis or multiple sclerosis, doctors like to play it safe and rule them out first. I had so many blood tests in one day I had a bruise on my arm the size of a bar of soap.
Although I might have been living with fibromyalgia for years earlier, I was first formally diagnosed, coincidentally, in 1993, a few months before my wedding. In the beginning, I attributed the pain in my hands, wrists and forearms to my graphic design job: it was the beginning of the desktop publishing revolution and my drafting table was replaced with a Mac and a mouse. Nobody knew much about workplace ergonomics in those days so computers were plunked on regular desks, folding tables, or basically, any level surface. Repetitive strain injuries like carpal tunnel syndrome and tendonitis were popping up like mushrooms, and employers were nervous. Thinking that I was yet another victim of the Computer Age, I went from specialist to specialist with no results and had to take all my personal and vacation time off so I could rest. My chiropractor had me in wrist splints. Finally my internist had his suspicions that the magnitude of the “injury,” the lack of positive tests and the time I’d spent at the computer didn’t add up.
He sent me to a rheumatologist (a doctor who specializes in other autoimmune diseases like arthritis and lupus), who diagnosed my fibro.
At that time, not much was known about fibromyalgia (many health professionals believed it was all in your head!) so treatment was textbook: prescribe a low dose of an antidepressant or muscle relaxant to enhance sleep by raising serotonin levels in the brain. Some of these medications are supposed to make you sleepy and reduce pain, so theoretically you get a double-dose of help.
The rheumatologist gave me a prescription for a tricyclic antidepressant called Elavil and mimeographed instructions on how to take it, starting with a small dose and working up to a larger one.
Unfortunately, all Elavil gave me was night sweats. Then I tried Flexeril, a muscle relaxant that is supposed to promote restorative sleep, and that worked better, although I felt hung-over and fuzzy in the morning.
Since my rheumatologist couldn’t offer me any more help (other than try to relax), I began to hunt for information on my own. I found the Fibromyalgia Network, an organization which publishes a regular newsletter full of day-to-day coping tips and research abstracts on new medications and therapies. (They now have a web site.) Eventually I also found a few good books, including “Fibromyalgia and Chronic Myofascial Pain Syndrome,” written by two women (Devin Starlanyl, MD and Mary Ellen Copeland, MS, MA) who both have fibro. I learned that there were many more medications available other than the two that I’d tried, and that there was a lot I could do to help myself. I learned that massage and hot baths could give my poor, aching muscles some relief and help me sleep. I learned that stress, illness and certain foods exacerbated the condition, and finding a gentle aerobic exercise I could live with was vital, even though, tired and achy most of the time, the last thing I wanted to do was exercise. Some of my stress disappeared on its own – the wedding was over and I got fired from the job that I hated – and eventually the flare subsided.
For the next ten years or so I went in to what is called remission – a period where I was asymptomatic. I attribute this to following the advice in these books and taking good care of my body – good nutrition, regular exercise and more effectively managing the stress in my life.
But in early 2005 it returned with a vengeance. I’d let myself get bombarded with stress on all fronts. At my job I’d become a workaholic, on deadline for a major project and doing the work of two people. My mother-in-law had been battling Stage 4 breast cancer and had had a double mastectomy the previous November. My stepfather passed away from lung cancer a few months earlier and – the proverbial straw that literally broke this camel’s back – I picked up a computer hard drive and herniated two disks in my lumbar spine.
The fibromyalgia recurrence that followed (usually called a “flare,” but I likened this one more to a solar flare) was vicious. My legs and hips ached. I stopped sleeping. I spent most days on the couch on an ice pack. The inactivity only made the fibro worse. The NSAIDS (non-steroidal anti-inflammatories, like ibuprofen, naprosyn, etc.) I was taking for my back were making me sick (some sources claim that NSAIDs help fibro pain but they don’t help me much and there is some evidence that shows that they compromise intestinal permeability meaning the nutrients you need in order to heal are not absorbed correctly). None of the sleep medications my doctor prescribed worked well, and some actually made the insomnia worse (this is called a “paradoxical reaction”). Twice they landed me in the emergency room.
I only started getting some relief for the fibro when I began physical therapy for my back. By then I was so sleep-deprived and my muscles were so atrophied that I could barely walk. The PT gave me a cane, and asked me to try to walk slowly for 8-10 minutes every few hours. Even this was exhausting at first.
But by combining a regular, gentle program of walking, stretching and eventually, simple strengthening exercises, my flare became manageable, and I also learned a good deal more about how to live with fibromyalgia.
I learned that while many more medications and protocols (non-drug therapies) are available now that weren’t even a gleam in a researcher’s eye in 1993, doctors still don’t know a whole lot about fibro other than it’s difficult to treat and care programs are as individual as the people wrestling with the disease. I’ve learned that what worked for me once (the Flexeril) did nothing for me now. Even today, the only scientifically proven modality to help fibromyalgia is gentle aerobic exercise. Everything else is trial and error. Treatment with prescription drugs is more of an art than a science, since no drug has been developed as yet specifically to treat fibromyalgia (all of them are used in what is called an “off label” manner because they’ve been shown to improve the various symptoms of fibro and not the disease as a whole.) I’ve head of some “lucky” fibromites (a common term used for people living with fibromyalgia) who only need to take Elavil on days when they’re flared up, or one very lucky one who takes an aspirin a day and never has to give it a second thought.
The thornier problem, as I’ve alluded to earlier, are people like me and many others who are extremely sensitive to medications. Many fibromites are, because their immune systems are so out of balance that their bodies see everything incoming (even supposedly “good” things, like foods, vitamins and necessary medications) as Invaders From The Death Star. I tried so many medications – for sleep, for the pain – that I was on a first-name basis with my pharmacist.
So this is why so many people with fibro – me included – use a number of different strategies to keep their bodies healthy and nourished to fight existing flares and prevent new ones. Doctors are only now recognizing these modalities as potentially effective treatments, but they are things that we fibros have had to learn on our own.
Specifically, this is what has worked the best for me:
Ã¢Â?Â¢I improved my diet by avoiding as many processed foods as possible, limiting the use of vegetable oils (suspected of being an inflammatory agent) and eliminating what I’ve found (by painful trial and error) the “trigger” foods that exacerbate my flares. For me (and many others) these are sugar, caffeine, alcohol, MSG and aspartame (NutraSweet). Others may have specific foods they are sensitive to and must avoid, like dairy or soy.
Ã¢Â?Â¢I take a complicated regimen of vitamins and herbal products, including a massive multi-vitamin and amino acid supplement, extra vitamin C, Omega 3 oils, calcium, melatonin and Coenzyme Q10. Go slowly if you want to try any of these, especially if you have a sensitive system, and always check with your doctor before you take supplements. Some may conflict with prescription medications or other existing conditions.
Ã¢Â?Â¢I found a good massage therapist who has experience with fibromyalgia. Using gentle techniques, she improves the circulation in and around my muscles to reduce pain and help them relax. I go every month, more frequently when I’m really flared up.
Ã¢Â?Â¢ I’ve had good success with acupuncture. This can get expensive, because fibro can’t be treated with only one or two visits. But it’s healthier than taking a lot of painkillers. At first I’d only considered that it would help with the pain, but also found it reduced my anxiety and helped me sleep, too.
Ã¢Â?Â¢ I drink lots of water. This helps flush the toxins from my body. Some research has shown that fibros aren’t efficient at eliminating waste products from their muscles (such as lactic acid from exercise) and this creates muscle pain and adds to the burden of my already overtaxed liver and kidneys.
Ã¢Â?Â¢ I still need to take sleep medication (I take 2 mg of Ativan at bedtime), but I’ve worked hard on developing and maintaining a good sleep hygiene program to help it work so that (someday) I won’t need to take so much. I go to bed the same time every night. I don’t watch television in bed. I avoid caffeine and alcohol anyway, but if you don’t, try not to have them a few hours before retiring. Ditto a big meal or exercise. You need to give your body a chance to wind down so it will know when to sleep. And that means no e-mail, no surfing the web. I don’t even watch the news after seven-thirty or so. I keep the bedroom cool, dark and quiet. I also use a sleep mask and earplugs. I might look ridiculous, but it helps, so I don’t care.
Ã¢Â?Â¢ A good attitude is everything. This has been the hardest lesson for me to learn, and I’m still learning it. That even though something hurts today, it might not hurt tomorrow. That life still exists outside my body. That there are good days and bad days, and if I’m having a good day, I try not to go out and do everything I’ve ever wanted to do for the past year and a half, because I know that’s just going to tax me out and send me spinning into a flare. And if I have a bad day, I try very hard not to think that I’m never going to have another good day again. To help me with all of the above, I’ve been seeing a therapist, and trying on my own to develop stress-busting techniques like meditation, self-hypnosis and ways of thinking that don’t send me into a downward mental spiral. Going out and having fun once in a while helps, too!
But there is some good news to report from the front. Researchers expect that within five years, new medications might be available and FDA-approved specifically for fibromyalgia. While I’m not holding my breath (I’ve had so many disappointments already), I’m cautiously optimistic. The other good news is that there is a world of support and information available on the Web that I didn’t have in 1993, when I was struggling just to get some doctors to believe that I wasn’t crazy.
The downside of this means more potential for fraud. Sign up for any chat group or e-newsletter for fibro and you will be bombarded with offers of “miracle cures.” Purveyors of these know that we’re desperate for relief. But right now there is no cure. And if anyone offers me something that sounds too good to be true, than it probably is.
But I can’t stress enough the importance of surrounding myself with support. Not just from family members, friends, and a compassionate medical team, but from fellow fibromites, too. I know from experience that finding a compadre to commiserate with, gain strength from and share information with helps me get through the day. And sometimes that’s better than anything from the pharmacy.