However, there are two exceptions to the lack of pathology or illness. Many people with fibromyalgia have “small fiber sensory neuropathy.” This means the small nerves serving your arms and legs aren’t working properly, causing burning and tingling. Gabapentin and pregabalin (Lyrica) have been promoted to treat this problem, but they don’t work that well in my experience. Indeed, the studies of pregabalin show you have to treat six patients to help one person.
Second, a small percentage of those diagnosed with fibromyalgia actually have chronic fatigue syndrome (CFS). There is some overlap between the two conditions, but usually they’re quite distinct. Fibromyalgia is a chronic pain disorder where aching and tenderness are key. Patients with chronic fatigue syndrome have some aching, but their main problem is debilitating fatigue, which often causes profound disability. Gentle, gradually increasing exercise is the key treatment for fibromyalgia but makes CFS worse.
“Fibromyalgia” may actually be more than one illness
Fibromyalgia usually begins in one of three different ways. The most common onset is following trauma, typically an automobile accident or injury at work. Though a single injury can do it, usually that’s not enough. Many of my patients had one or two injuries from which they recovered fully, but the third one was just too much.
Often the injury that precipitates fibromyalgia is shocking but not serious: you fall flat on your face and it knocks the wind out of you. Or you’re rear-ended at high speed by another driver, but the emergency room looks you over and sends you home. You feel okay at first, but gradually a slight pain becomes worse and spreads to different areas of your body. (This is particularly apt to occur if you become very upset following the injury, or if you rest excessively.)
One variation on the “starts after an injury” scenario is that you have mild aching following an accident but are basically doing well. Then you change jobs from one where you’re up and moving about all day to a desk or computer job where you never move. The lack of exercise precipitates an extreme worsening of pain.
The second common scenario is you develop a viral illness that lingers for weeks, or become ill with pneumonia or rheumatoid arthritis. You may spend a month or more in bed. Some patients with this onset also develop debilitating fatigue, which may become more of a problem than the pain itself.
The third common way fibromyalgia begins is it comes out of nowhere. You just begin to hurt. The majority of people with this pattern have severe emotional distress that they’re simply not dealing with.
On occasion, fibromyalgia is secondary to another illness such as rheumatoid arthritis or inflammatory bowel disease. Also, certain illnesses can mimic fibromyalgia, including obstructive sleep apnea, polymyalgia rheumatica, and thyroid disease. Older patients should be evaluated for certain kinds of cancer. Be sure you’ve been thoroughly evaluated at least once by a competent physician.
Once it’s established, fibromyalgia may be a different process in different patients. In some, emotional distress predominates. Others function relatively normally but are in severe pain. A third group is mostly severely fatigued and complains of “brain fog”: poor memory and difficulty concentrating.
The longer I treat patients with fibromyalgia, the more convinced I become that emotional distress plays a predominant role in most patients. Look over the topics on emotional healing to learn more.
How to treat fibromyalgia
Treating fibromyalgia requires doing several things at once: ensuring you have the right diagnosis, avoiding the wrong medications, and taking the right medications. Learn effective coping skills to turn off the pain. Here are these principles in a little more detail:
- Remember that fibromyalgia is caused by a system of interacting factors that reinforce one another. In most cases, there is no single “magic bullet” that will cure you. Rather, you should address each of the physical, mental, emotional, and spiritual issues contributing to your pain.
- Avoid the things that help in the short run but make you worse in the long run. Examples include excessive rest, withdrawing from life, not working, and taking the wrong medications.
- The most effective treatments help in the long run but may be difficult to get started. Examples include exercise and taking the right medications.
- Be as active and functional as possible. If you’re going to hurt anyway, you might as well have a life.
- Wrong medications.Most patients should avoid opiates and sedatives. Opiates are pain killers like Vicodin, Norco, oxycodone, and Oxycontin. Sedatives are tranquilizers like Valium, Ativan, and Xanax. These drugs are potentially addicting. They make many people more unsteady emotionally. In the short term they make your pain better, but over time they are apt to fix your pain in place and prevent improvement. A surprising number of my patients have dramatically improved pain just by stopping harmful medications.
- Right medications. Many patients with fibromyalgia are highly sensitive to drug side effects, but — although it may take time — most people can find medications that truly do help. The correct antidepressant may be invaluable. Certain relaxers like gabapentin, pregabalin, or Flexeril may be helpful adjuncts. A number of over-the-counter supplements can be extremely useful.
- Don’t let anyone do surgery for pain unless it’s absolutely certain surgery is necessary. (Unnecessary surgery is apt to make fibromyalgia worse, not better.)
- One of the most important treatments is exercise, stretching, and strengthening. Your goal is to become fit, flexible, and strong. It’s critical to build up your exercise capability. If you exercise smarter than your pain, you should avoid pain flare-ups. Try to exercise regularly (often several times a day) within reasonable comfort.
- Recognize and treat depression. If you’re depressed, other treatments for fibromyalgia are apt to fail without addressing this issue. Even people who have never been depressed often feel better if they take antidepressant medications. However, antidepressants fail to benefit a third to a half of those with fibromyalgia.
- Many people with fibromyalgia have been abused physically or sexually. Others have had to contend with alcoholic or addicted relatives who held authority over them. Still others have a lifelong pattern of caring for parents, spouses, and children without ever addressing their own needs. I’ve often referred people with these sorts of backgrounds to 12-step groups like Adult Children of Alcoholics and Dysfunctional Families, or AlAnon, even when relatives were not alcoholic or addicted.
- Sometimes, support groups of fibromyalgia patients turn into whining sessions, complaining that no one understands them, how awful life is, and how screwed they are. It’s almost as if the whole group sits on the “Pity Pot.” Pessimism and blocked rage perpetuate pain and fix it in place. In contrast, learning relaxation and meditation may be crucial.
- Fibromyalgia may be linked to feeling disempowered. Some of my patients feel helpless and ineffective in their lives. The usual cause of this perception is blocked strong emotion. You can learn to get your personal power and authority back.
- It’s important to work with a physician who can help you figure out the various pieces of the puzzle of why you have pain and how to stop the pain.