Science is just beginning to understand this very common, long-term form of chronic pain. But also how the nerves can be “remodeled” to make pain signals disappear, while allowing more pleasant signals to pass.
Fibromyalgia is a term that many people are familiar with, but it is much rarer that people truly understand this disorder. Fibromyalgia doesn’t make you different. There is no test to say with certainty that you have it. Also, there is a wide range of symptoms, which can vary from person to person. You may have heard that fibromyalgia isn’t a “real” disease, that the symptoms are “all in the head,” or that people with fibromyalgia are hypochondriacs, just depressed or stressed.
Fibromyalgia: a real health problem
Make no mistake: Fibromyalgia is a real long-term health problem that science is only just beginning to understand. The main symptom is generalized pain that occurs in a large part of the body, at approximately the same level, for at least three months, with no other explanation for the pain. Advances in brain imaging and pain testing in recent years have given doctors a better understanding of the cause of fibromyalgia. In particular, fibromyalgia is now known to be caused by changes in the central nervous system, a disorder called central sensitization, which is linked to many other chronic pain disorders.
A holistic approach to pain
This better understanding of fibromyalgia has been accompanied by improved treatment strategies, which allow for an individualized and holistic approach to pain and the many other symptoms that can add to the pain. At the heart of many treatment options and lifestyle measures is the goal of reorienting the brain and nervous system so that the “scream” of pain signals becomes quieter, allowing more pleasant signals as one strives to modify and control the pain.
A recombination of nerve messages…for the worse
Your body is covered with sensory cells that register all the sensations in your body and send this information to the brain through the spinal cord. The brain decides what to do with this information. Are you too cold? Put on a sweater. You are thirsty ? Drink a glass of water. In the case of central sensitization, the communication of signals emitted by sensory cells through the spinal cord is amplified. Over time, the entire nervous system goes into a state of alert and the brain begins to think that ordinary sensations, such as a light touch or a digestive grunt, are painful.
In addition to nerve amplification, brain pathways change for the worse. Using new brain imaging techniques, researchers can see that in people with central sensitization, more of the brain is recruited over time to focus on amplified pain signals. It’s like a place where lots of highways, rural roads, and side streets intertwine, were paved with a few big highways to get pain signals to your brain faster.
The concept of a malfunctioning nervous system explains why people with fibromyalgia can experience so many different symptoms. And why these symptoms can affect a person’s life so profoundly. Added to this may be issues that coincide with or arise from fibromyalgia, such as lack of sleep, deconditioning due to lack of physical activity, stress from many factors including finances or relationships, substance abuse or overlapping illnesses.
Symptoms that affect the whole body
As knowledge about fibromyalgia has improved, experts have identified a symptom profile that can help doctors diagnose fibromyalgia. It starts with a history, discussion of symptoms, physical exam, and tests to rule out other problems. If fibromyalgia is suspected, questionnaires such as the Generalized Pain Index and the Symptom Severity Scale can be used to calculate an overall “score.” Also, other criteria, such as pain in at least four out of five areas of the body and pain at about the same level for at least three months without any other cause, help establish a diagnosis of fibromyalgia.
There are many other possible symptoms, plus diseases and disorders that can overlap and complicate the picture. These are usually fatigue that lasts for months or years, stiffness, migraines, memory or thinking problems (“fibro fog”), sleep problems, pelvic pain, bladder pain or intestinal problems, weakness, balance problems, depression or anxiety.
Modifying the pain experience
In the case of fibromyalgia, pain messages take over your nervous system and drown out messages about more pleasurable experiences or sensations. In the end, it’s almost as if your brain hears nothing but pain and discomfort.
One of the main goals of fibromyalgia treatment is to reverse this trend. This is done by reshaping the nerve pathways that inform your brain of pleasurable or non-pain related sensations, while trying to quieten the pathways that channel pain messages.
Cognitive-behavioral therapy (CBT) is a specific therapeutic approach that is the most effective and common way to manage the symptoms of fibromyalgia. CBT helps you learn the skills you need to live your life, rather than letting symptoms rule your life. The cognitive part of CBT is learning to challenge your negative thoughts and adopt more realistic ways of thinking about your pain and changing how you feel. The behavioral part of CBT is about the active part of living with fibromyalgia.
This includes learning to:
– Gradually increase your physical activity so that you can complete 30 minutes of low to moderate intensity exercise most days. Moving can seem intimidating at first. But it’s one of the most important ways to manage fibromyalgia. If done correctly, it can ease pain, relieve depression, reduce fatigue, prevent fibro fog, decrease stress and anxiety, and promote good sleep.
– Relax and calm your mind using techniques such as guided imagery, meditation, deep breathing and progressive muscle relaxation.
– Develop good sleep habits, as a full night’s sleep and more restful sleep can reduce pain and fatigue.
– Balance your time and energy by adopting a daily rhythm and structure.
– Set goals to motivate yourself and measure your progress on your way back to life.
– Improve your mood by managing stress and anxiety. And asking for help or treatment if you have depression or other mental disorders.
– Communicate better about your fibromyalgia and your general 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. Consume moderate portion sizes, drink plenty of water, and limit your caffeine and alcohol intake.
– Understand the role of medication in your management plan. Although several types of medications can be used to help manage fibromyalgia, they are rarely recommended as the only treatment. Also, most people find that non-drug management strategies are actually more effective than drug treatments.
However, depending on your situation, using one or more medications can help ease pain, improve your mood, or reduce fatigue. Thorough discussions with your doctor can help you weigh the benefits of a medication against the possible side effects.
Achieving these goals involves many integrated steps, and an overall plan is often ideal. If symptoms are severe and more structure would help, talk to your doctor about an interdisciplinary pain management program. These programs involve working with a team of experts to improve your quality of life, manage pain and other symptoms, and achieve the goals you have set for yourself.
Do’s and Don’ts for Family Members
These tips can help you support a loved one with fibromyalgia.
To do :
– Ask how you can help. Needs may change as symptoms evolve.
– Be responsive. This will help you provide the right kind of support.
– Have fun and laugh together. This promotes family support and can distract from the pain.
– Take care of yourself. Take time for your health and well-being and share your struggles and issues. Fibromyalgia does not prevent a love made from supporting you in return.
Do not do:
– Assume. What you think is helpful can be hurtful or suffocating.
– Try to do everything. Allow your loved one to do manageable tasks.
– Going underground. Life isn’t over, but you may need to adapt, adjust, and be flexible to make things work.
– Put your own needs aside. This can drain your emotional and physical reserves. Take care of your health and keep exploring your interests.