Science is just beginning to understand this long-term, widespread form of chronic pain and how nerves can be “re-mapped” to make pain signals grow quitter, while allowing more pleasant signals to come through.
Fibromyalgia is a term many people know, but it’s much less common for people to truly understand the disorder. Fibromyalgia doesn’t make you look any different. There’s no one test that can say for sure that you have it. In addition, there is a wide range of symptoms, which can vary from person to person. You may have heard that fibromyalgia is not a “real” disease or that the symptoms are “all in a person’s head” or that people with fibromyalgia are hypochondriacs or simply depressed or stressed.
Make no mistake: Fibromyalgia is a real, long-term health condition that science is just starting to understand. The core symptom is widespread pain occurring throughout much of the body at about the same level for at least three months — with no other explanation for the pain. Improvements in brain imaging and pain testing in recent years have helped doctors gain critical insight into its cause. In particular, fibromyalgia is now understood to be caused by changes in the central nervous system — a disorder called central sensitization, which is linked to many other chronic pain disorders.
With better understanding of fibromyalgia has come improved treatment strategies that allow for an individualized, whole-person approach to address the pain and many other symptoms that can be at play in addition to pain.
At the heart of many therapy options and lifestyle steps is the goal of retraining the brain and nervous system so that the “shouting” of pain signals grows quieter, allowing more pleasant signals to be heard as one works to change and gain control over the pain experience.
Turned up, rewired
Your body is covered in sensor cells, which keep track of every sensation in your body and send that information through your spinal cord to the brain. The brain decides what to do with this information. Too cold? Put on a sweater. Thirsty? Have a drink of water. With central sensitization, communication of signals from sensor cells through the spinal cord gets amplified. Over time, the entire nervous system gets turned up to high alert and the brain starts to think that ordinary sensations — such as a light touch or a digestive grumble — are painful.
In addition to nerve amplification, pathways within the brain change for the worse. With newer brain-imaging techniques, researchers can see that in those with central sensitization, more of the brain is recruited over time to focus on amplified pain signals. It’s as if a place with a mix of many highways, rural roads and side streets were paved over with a few large freeways to more quickly transport pain signals to your brain.
The concept of a turned-up nervous system explains how people with fibromyalgia can feel so many different symptoms, and why these symptoms can affect one’s life so deeply. Adding to this can be issues that coincide with fibromyalgia, or stem from it, such as lack of sleep, deconditioning from lack of physical activity, stress related to many factors — including finances or relationships — substance misuse, or overlapping diseases.
As knowledge of fibromyalgia has improved, experts have identified a symptom profile that can help doctors diagnose fibromyalgia. This starts with a medical history, a discussion of symptoms, a physical exam and testing to rule out other problems.
If fibromyalgia is suspected, questionnaires such as the widespread pain index and the symptom severity scale may be used to calculate an overall “score.” In addition, other criteria — such as pain in at least four of five regions of the body and pain at about the same level for at least three months with no other cause — help form the basis of a fibromyalgia diagnosis.
There are many other possible symptoms, with the added potential for overlapping diseases and disorders to complicate the picture. Commonly, these include fatigue lasting months or years, stiffness, migraines, memory problems or cloudy thinking (“fibro fog”), sleep problems, pelvic, bladder or bowel pain, weakness, balance problems, and depression or anxiety.
Changing the pain experience
With fibromyalgia, pain messages take over your nervous system so that they drown out messages about more-pleasant experiences or sensations. Eventually, it’s almost as if your brain isn’t hearing about anything else but pain and discomfort.
One key goal of fibromyalgia treatment is to reverse this trend. This is done by remapping nerve pathways that tell your brain about pleasant or non-pain-related sensations, while trying to make the pathways channeling pain messages grow quieter.
Cognitive behavioral therapy (CBT) is a specific approach to therapy that’s the most effective and most common way to manage fibromyalgia symptoms. CBT helps you develop the skills you need to be in charge of living your life, rather than having the symptoms run your life. The cognitive part of CBT involves learning to challenge your negative thoughts and adopt more realistic ways of thinking about your pain — and change how it makes you feel. The behavioral part of CBT addresses the active part of living with fibromyalgia. This includes learning how to:
- Gradually increase your physical activity so that you can perform 30 minutes of low- to moderate-intensity exercise most days. Getting moving may seem daunting at first, but it’s one of the most important ways to manage fibromyalgia. If done appropriately, it can lessen your pain, ease depression, reduce fatigue, prevent fibro fog, decrease stress and anxiety, and help promote good sleep.
- Relax and quiet the mind, using techniques such as guided imagery, meditation, deep breathing and progressive muscle relaxation.
- Establish good sleep habits, as getting a full night’s sleep and more restorative sleep can lessen pain and fatigue.
- Balance your time and energy with pacing and daily structure.
- Set goals to help with motivation and to measure progress on the road to getting your life back.
- Improve your mood by managing stress and anxiety — and seeking help or treatment if you have depression or other mental health conditions.
- Communicate better about your fibromyalgia and overall health with your doctors, family and friends — and gain and maintain social support.
- Eat a healthier diet that includes a variety of minimally processed plant foods such as whole grains, vegetables, fruits, beans and legumes, nuts, herbs, and spices. Keep portions moderately sized, drink plenty of water, and limit caffeine and alcohol consumption.
- Understand the role of medications in your management plan. While several types of drugs may be used to help manage fibromyalgia, they are rarely recommended as the only treatment. In addition, most people find that nondrug management strategies are actually more effective than drug therapies. Still, depending on your circumstances, the use of one or more drugs may help dial down pain, boost your mood or reduce fatigue. Careful discussions with your care team can help you weigh the benefits of a drug against the downside of possible side effects.
Working toward these goals involves numerous integrated steps, and a comprehensive plan is often ideal. This can be done with the help of an understanding primary care provider, and preferably involving a health professional with expertise in cognitive behavioral strategies. If symptoms are severe and more structure would be helpful, talk to your doctor about an interdisciplinary pain management program, sometimes called a chronic pain rehabilitation program. These programs involve working with a team of experts to improve your quality of life, manage pain and other symptoms, and achieve goals you set for yourself.
Do’s and don’ts for family members
These tips can help you support a loved one with fibromyalgia.
Ask how you can help. Needs may change as symptoms change.
Be responsive. This helps you provide the right kind of support.
Have fun and laugh together. This helps foster family support and can distract from pain.
Take care of yourself. Take time for your health and well-being and share your struggles and problems. Fibromyalgia doesn’t prevent a love done from supporting you in return.
Assume. What you think might be helpful may be hurtful or stifling.
Try to do it all. Allow your loved one to do manageable tasks.
Hunker down. Life isn’t over, though you may need to adapt, adjust and be flexible to make things work.
Push your own needs aside. This can deplete your emotional and physical reserves. Nurture your own health and continue to explore your interests.
Go in-depth on fibromyalgia and strategies to take back your life with Mayo Clinic Guide to Fibromyalgia.
Barbara K. Bruce, Ph.D., L.P.
Dr. Bruce, who is the co-author of Mayo Clinic Guide to Fibromyalgia, is the clinical director of the Fibromyalgia Treatment Program at Mayo Clinic in Jacksonville, Fla. She’s also a pain psychologist in Mayo Clinic’s Department of Psychiatry and Psychology and a professor of psychology at the Mayo Clinic College of Medicine and Science.