Fibromyalgia
Fibromyalgia
Pain, Pain Go Away
You hurt. In your shoulders, your arms, your hips. Even your feet feel as though someone slammed them with the mallet you use to tenderize meat.
Not only that, you're exhausted--as though you haven't slept for a week. Every day it gets harder to drag yourself out of bed--and harder still not to climb back in after breakfast.
Women who have fibromyalgia, a pain-all-over condition characterized by at least 11 tender points in muscles scattered all over their bodies, wake up to pain and fatigue every morning.
They also wake up to a world in which many doctors tell them the disease is "all in their heads." Add to this employers who suspect they're malingering and families who wonder how it could hurt as much as Mom says it does.
Part of the problem with fibromyalgia is that there's no outward sign that anything is wrong--no bruises, no breaks, no swelling.
The Chemical Connection
Fibromyalgia affects somewhere from three to six million Americans, 80 percent of them women. Many are unable to work and are able to leave their beds for only short periods of time.
The reason that fibromyalgia affects women more than men is a mystery, says rheumatologist I. Jon Russell, M.D., Ph.D., director of the University Clinical Research Center at the University of Texas Health Sciences Center in San Antonio and editor of the Journal of Musculoskeletal Pain. But until recently, just about everything about fibromyalgia was a mystery.
Now, largely because of the work of Dr. Russell and a handful of colleagues across the country, scientists are beginning to suspect that fibromyalgia is a syndrome in which a series of chemical imbalances in the body trigger cascades of pain and fatigue. They are giving special attention to substance P, the chemical that initiates the process that tells the brain the body is in pain. And they are also looking at the effects of low serotonin, a chemical in the body and brain that blocks the release of substance P and decreases the severity of perceived pain.
Scientists have found that serotonin in the brain also regulates the deepest stage of sleep, says Dr. Russell. Less serotonin would mean less deep sleep. That may be one reason people with fibromyalgia feel so exhausted every morning.
Digging for a Diagnosis
Although the causes of fibromyalgia are just beginning to emerge, doctors have been struggling to identify the disease for nearly 150 years. The difficulty was--and still is--the wide variety of symptoms that can accompany the pain and fatigue that characterize the disease.
"Seventy percent of people with fibromyalgia will tell you that they sleep very poorly," says Dr. Russell. They'll also tell you that their symptoms get worse when the weather changes, that their hands and toes frequently feel cold, numb or tingling, that they have pain in their joints as well as their muscles and that they have chronic, intermittent headaches--particularly in the back of the head or behind the eyes.
"They also report having bowel and bladder trouble," says Dr. Russell. Forty percent will have either constipation or diarrhea along with cramping abdominal pain. About 20 to 30 percent will also have jaw pain, and sometimes fibromyalgia accompanies other diseases such as Lyme disease or rheumatoid arthritis.
"All that's needed for the diagnosis of fibromyalgia is a three-month history of widespread pain and the demonstration of pain to the touch on 11 of 18 specific sites on the body," says Dr. Russell.
Getting Relief
Until fibromyalgia is diagnosed, women with this syndrome are so desperate to be free of pain that they--and their doctors--will try just about any pain reliever. But aspirin, acetaminophen and ibuprofen--and even prescription painkillers--are only marginally helpful.
That's why Dr. Russell and his colleagues are developing medications that directly influence serotonin availability and its effects in those with fibromyalgia. But until such drugs are generally available, here's how doctors suggest you handle the syndrome.
Hit the road. "Exercise increases the availability of serotonin somewhat," says Dr. Russell. In two studies where researchers evaluated the sleep patterns of healthy young people, exercisers were also less likely to develop muscular pain.
How can you get the same effect? "Develop a regular exercise program. Walk a mile or exercise for about 20 minutes in a pool every other day," suggests Dr. Russell. Start out with whatever amount you can, then build up gradually as your body allows.
Take to a hot tub. "Symptoms improve when people with fibromyalgia get into a hot bath or shower," says Dr. Russell. "The improvement is temporary, but it's substantial.
"We don't quite know what it means," he adds, "but it may be that the heat is increasing the availability of serotonin."
Get a massage. "When someone with fibromyalgia is given a massage, they usually do feel better for a period of time," says Dr. Russell.
Consider electroacupuncture. A Swiss study of 55 men and women with fibromyalgia found that six sessions of electroacupunture over a three-week period cut fibromyalgia pain in half.
Stainless steel needles connected to a weak electrical current were implanted at four to ten acupuncture points. Study participants reported a significantly higher pain threshold, less pain in general and less need for pain-relief tablets.
Get the right prescription. Until a drug specifically developed to treat fibromyalgia is available, there are a number of prescription drugs that scientists have found to help people with fibromyalgia, says Dr. Russell. With some of these medications it's also helpful to take an over-the-counter pain reliever. Ask your doctor whether a prescribed medication is compatible with these OTCs.
A Helping Hand
More than 25,000 people who have fibromyalgia have become part of the Fibromyalgia Network, a self-help organization (P.O. Box 31750, Tucson, AZ 85751-1750). The network assists more than 250 local self-help groups around the country and produces a newsletter that keeps members up to date on research. Members also share tips on how to live with fibromyalgia. Here are some of their favorites.
Make sure your doctor's up to speed. Most women with fibromyalgia spend a lot of time going from one doctor to another and being told to think "happy thoughts," says Kristin Thorson, founder of the Fibromyalgia Network. So if your doctor has a tendency to pat you on the head and hasn't any idea where the tender points in fibromyalgia are supposed to be, head for the door. Then check the Yellow Pages in your local telephone directory for a doctor certified in rheumatology or contact the Fibromyalgia Network for a list of self-help groups and physician referrals in your area.
Live for the moment. Fibromyalgia pain can be unbearable one moment, better the next. Take advantage of the good moments by doing such things as spur-of-the moment entertaining, suggests one woman with fibromyalgia. Instead of draining your energy reserves with elaborate dinner parties planned weeks ahead, simply call up friends and invite them over for pizza when you're having a good day.
Belt out your pain. When one woman with fibromyalgia is home alone and in pain, she slips a tape of Carly Simon's "Haven't Got Time for the Pain" into a Karaoke machine, turns down the right channel of the machine to tune Carly out, then belts out the song at the top of her lungs.
Pace yourself. Keep a diary of your activities, then use it to try to spread those activities out. Try to pace your activities so you don't get into situations where you have to do so much at once that you end up utterly exhausted.
Use the window. Most women with fibromyalgia seem to feel best between 10:00 a.m. and 3:00 p.m., says Thorson. Use this window to do things like shopping, chores and career tasks.
Get some support. Minimize muscular strain by using back supports and arm rests where you can. Neck supports, particularly while sleeping, may also help.
Making the Triumphant Choice Kristin Thorson, 39, a chemical engineer in Bakersfield, California, developed fibromyalgia in 1983. The disease forced her to choose between having a career and having children. Children won, and now she has two. This is her story. I used to be a runner. My neighbors would kid me, "How many hours are you going to run today?" because I just felt like I was a butterfly and I would just go and go and go. And the only constraint I had was how much time I had to run before I had to get dinner on. Then one day I woke up with a 102° fever. I hurt like I never hurt before. My buttocks were sore. I couldn't be touched. I had this burning sensation. My pants rubbing against my knee when I moved were so painful that I could hardly walk. I had a very heightened sensitivity, triggered by what was later thought to be some viral infection. I stopped doing everything. I was so lethargic that I shut down everything unless it was absolutely necessary. All I did was eat, sleep and go to work. I mean that was it. Except to see doctors. There's a tremendous loss of self-esteem after you've seen 20 doctors and they have all told you, "Well, Ms. Thorson, why don't you just go home and think happy thoughts?" I've been told that a lot. I was pushed out the door and told to go home and think happy thoughts even though I never said I wasn't happy. I had a wonderful husband and a career--I had everything going for me. So I kept thinking, I'm going to hang in there till I get a diagnosis. Then the doctors are going to give me a magic pill and I'm going to be fine. But finally the doctors said, "Well, the good news is, we know what you have: Fibromyalgia. The bad news is, we don't know what to do about it." I stayed on my job for another three months. But by that time I was 30, and my husband and I wanted to have a baby. But I knew there was no way I was going to be SuperMom--have a baby and a very demanding career. So I decided, well, I'm just not going to have a job right now. I was very fortunate because this is not a decision that everyone can make. But the result was two beautiful children. How do I make it through the day? It's like I wake up to a body that has run a marathon and it doesn't want to do anymore. It took all the years that I've had this disease to realize that when I get out of bed I should try to do only the simplest of things, like eat breakfast, scan the newspaper, get my hands in warm water. If I just do nonthinking movement-type things, my body eventually does come alive. Then I can do stretches. If I'm still feeling lousy at 10:00 a.m., I'll go back and take a nap. That little bit of extra sleep is better than any pill. I still want to be up by noon, because I don't want it to interfere with my normal sleep cycle. Naps have been very important, although it's difficult sometimes for my family and friends to understand why I took that nap when I look great. They think, "Oh, that lazy thing went back to sleep," you know? I started attending a support group in Los Angeles, a three-hour drive away. But the group leader was burning out. So I filled in. Then I got together with the four or five other group leaders in Los Angeles, plus the group I started in my hometown of Bakersfield, and we'd have speakers--doctors, nutritionists, people who speak on relaxation techniques. But I thought that with all these speakers coming and giving us all this great information, we should put something in writing so that everyone could share it. So I volunteered to do a newsletter, which today goes to 25,000 people all over the country. Some days are good; some are bad. But after coping with the disease for so long, I know I always come out of it. I know I'm going to make it through.
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Involve your family. It's hard for your family to understand what's going on. But if you take the time to talk about how you feel--about your pain, your exhaustion, your inability to be the kind of wife and mother you'd like to be--they'll begin to develop some insight.
Take control. Re-evaluate the goals you set for yourself before you developed fibromyalgia. Throw out those that are no longer possible, revise others and make new ones that you're certain you can achieve.
