I’ve known several people who have been diagnosed with fibromyalgia lately, so I thought I would learn more about it. Here is “the skinny” on FM from Janet M. Pollard with Texas A&M AgriLife Extension Service’s HealthHints newsletter series.
Fibromyalgia (FM) is a disorder characterized by chronic widespread pain at “tender points” (specific places on the neck, shoulders, back, hips, arms, and legs) that have a heightened painful response when pressure is put on them. FM symptoms are not restricted to pain. FM is actually a “syndrome” – a set of symptoms existing together. Other symptoms may include: debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty swallowing, bowel and bladder abnormalities, numbness and tingling in the hands and feet, problems with thinking and memory (sometimes called “brain fog” or “fibro fog”), headaches and migraines, anxiety, and depression.
FM is estimated to affect 5-6 million Americans aged 18 or older; 80-90 percent are women, although men and children can also have the disorder. FM is usually diagnosed in middle age (between age 20-50). Roughly one quarter of people with FM are work disabled due to their condition.
FM is an often a misunderstood, misdiagnosed, and even unrecognized disorder. The cause is unknown, although current thought suggests it may be related to problems with the central nervous system. There is no cure for FM, although there are treatments that can help. There is also no laboratory, radiologic, or other diagnostic test to diagnose FM; however, these types of tests can be used to exclude other possible conditions.
Find an experienced doctor
The problem with fibromyalgia is that there are so many symptoms that you feel like a hypochondriac, especially when no one can see any of your pain, brain fog, and exhaustion. Your symptoms are mostly invisible to others. The pain of FM tends to come and go and move about the body, which can make explaining symptoms difficult for the patient and diagnosis difficult for the doctor. Added to this is a tremendous variability of symptoms between one person with fibromyalgia and another. These complications cause physicians to be perplexed and patients to be frustrated.
Since people with fibromyalgia tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis. It’s important to find an empathetic doctor, who is knowledgeable about FM and its treatment, and will listen to and work with the patient. Many family physicians, general internists, neurologists, or rheumatologists (doctors who specialize in arthritis and other conditions that affect the joints or soft tissue) can treat FM.
Fibromyalgia is not a form of arthritis (joint disease) and does not cause inflammation or damage to joints, muscles, or other tissues. However, because fibromyalgia can cause chronic pain and fatigue similar to arthritis, it may be thought of as a rheumatic condition. As a result, it is often the rheumatologist who makes the diagnosis (and rules out other rheumatic diseases), but your primary care physician can provide all the care and treatment for fibromyalgia that you need.
To diagnose FM, your doctor will ask you about your medical history and perform a physical examination. Prepare ahead of time for your appointment by writing out your symptoms and medical details.
There are two established criteria for the diagnosis of FM:
• widespread pain (i.e., pain occurring on both sides of the body and above and below the waist) lasting at least three months, and
• at least 11 positive tender points – out of a total possible of 18. (Tender points are identified by putting just enough pressure to cause the nail bed to blanch or turn white, 4 kilograms.)
Because FM symptoms can come and go (even fluctuating throughout the day6), and the exact amount of pressure needed to determine tender points can be difficult to assess, less stringent guidelines have been developed for doctors to use in general practice. These newer diagnostic criteria include:
• widespread pain lasting at least three months, and
• no other underlying condition that might be causing the pain.
Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia. This means undergoing initial laboratory tests to rule out conditions with similar symptoms. Blood work, radiological tests (such as x-rays), and electrical nerve and muscle tests may be done to make sure patients do not have other conditions with similar symptoms. Do your part – ask questions, keep records of tests you’ve had done, and build a good relationship with your doctor. The sooner you have an FM diagnosis, the sooner you can begin treatment to control your symptoms.
Finding the best life quality
There is no cure for FM, and there is no treatment that will address all FM symptoms. Yet, FM can be treated with an individual plan designed by you and your doctor actively working together. Because each individual with FM has a variety of tender points and other symptoms, it may take some trial and error before you and your doctor find what gives you the most relief.
Fibromyalgia treatment often requires a team approach. The team may include your doctor, a physical therapist, and possibly other health care providers. A pain or rheumatology clinic can be a good place to get treatment. It can be hard to assemble this team, and you may struggle to find the right professionals to treat you. When you do, however, the combined expertise of these various professionals can help you improve your life quality. Try to be patient, and don’t give up – keep playing an active role in your health care.
The most effective treatment approaches for fibromyalgia symptoms use a combination of medications, non-drug therapies, and self-help strategies.
Medicine. A variety of prescription medications are often used to reduce pain levels and improve sleep, including Anti-seizure medications, Antidepressant medications, Muscle relaxants, Lidocaine injections and Pain relievers.
Non-drug therapies. Medications can have negative side effects and cannot treat all aspects of FM. FM patients may turn to non-drug therapies as an alternative to or in addition to drug therapies. Most of these therapies are aimed at relaxing muscles and relieving pain. Some non-drug therapies include Physical and occupational therapy and Heat/cold therapy. Moist heat especially seems to help.
Complementary and alternative therapies. Many people with FM also report varying degrees of success with complementary and alternative therapy. These therapies may include massage therapy, myofasical release therapy, trigger point therapy, chiropractic treatments, acupuncture, acupressure, yoga, and tai chi.
Self-help strategies. Self-care is critical in the management of fibromyalgia. Self-care requires:
• managing stress,
• sleeping well, and
• eating healthy.
Managing stress. Develop a plan for reducing emotional stress and overexertion, especially on days when your FM flares, which may mean learning how to say “no” to some activities without guilt. Try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active.”9 Try relaxation techniques, such as deep breathing or progressive muscle relaxation. Conserve energy by combining errands, making simple meals, cooking extra on days you feel well to use on days you don’t, keeping shopping short, sitting while you work, or taking short rest breaks. Move wisely, using a cart to transport items when possible, checking the weight of grocery bags before lifting, and using assistive devices. (Note: although this article about assistive devices is related to arthritis, the devices are appropriate for FM as well).
Exercising. Numerous studies show that exercise is one of the most important treatments for fibromyalgia. Exercising with fibromyalgia is not only safe, it is one of the best things you can do to help yourself. While it’s natural to want to reduce activity when you’re in pain and fatigued, a regular exercise program will actually reduce your pain and give you more energy. Regular exercise increases the body’s production of endorphins, natural painkillers that also boost mood. Starting slowly and gradually increasing the duration and intensity of exercise can help you enjoy the benefits of exercise without feeling more pain. You may experience some soreness in your muscles as you start. While some muscle soreness is to be expected, if you have severe pain or pain that lasts for two hours after exercise, you should cut back exercise duration and/or intensity for a little while.
You can start with small increases in everyday activities like gardening, housework, or taking the stairs instead of the elevator. Then move to a more regular exercise regimen. Walking, biking (stationary biking), and water exercise (swimming, water aerobics, aqua jogging) are recommended forms of exercise. Whenever possible, working with a physical therapist or exercise physiologist can be beneficial. In general, 20 minutes of physical activity three times a week at 70 percent of maximum heart rate (220 minus your age) is sufficient to maintain a reasonable level of aerobic fitness.
Sleeping well. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping. Keep your room quiet, dark, and a comfortable temperature. Avoid caffeine, sugar, alcohol, and any foods that cause indigestion before bed. Ironically, medications designed to help you sleep can produce an abnormal form of sleep, leaving you unrefreshed and groggy the next day. Other medications that can interfere with sleep include corticosteroids, some cold medicines, and headache medications containing caffeine. Talk with your doctor about sleep medications that may be useful (such as those for restless leg syndrome or periodic leg movement). Try these suggested aids for relaxation and sleep.
Eating healthy. Research has not proven that any specific foods can affect fibromyalgia. Eating a good, balanced diet helps your body function at its best. People who have any chronic disease that doesn’t respond to conventional treatment often turn to other types of remedies. People who have fibromyalgia tend to use more dietary supplements. Some people think that there’s a magic diet for fibromyalgia. They think that they should avoid refined flour and sugar, sugar substitutes, the caramel color in some soft drinks, or carbonated drinks in general. But [while avoiding sugary soft drinks may be a healthier choice] there hasn’t been any research-based evidence demonstrating that any of these substances cause the symptoms, nor that removing these substances from your diet works to make the pain go away. There may be anecdotal evidence – people who say that something helps relieve their symptoms – but there’s no clearly identified problem foods or magical diet cure yet. Talk with your doctor about healthy dietary changes you can make. Always discuss any supplements you are taking or considering, as these can have negative side effects and interact with other medications.
It can be hard to deal with the chronic pain, fatigue, and accompanying symptoms of FM. Consider joining a support group or seek out cognitive behavior therapy (CBT). Talking with others who also have FM in a support group setting can be helpful. Patient education that uses CBT can also help you develop coping skills to deal with this chronic condition. Ask your doctor about therapists who offer CBT as well as any local or online support groups.
There is no single treatment that works alone to relieve fibromyalgia or that helps all people with the condition. Use these self-help strategies, and work with your health-care team to find the best way to manage your symptoms and provide you the best life quality. If you haven’t found this combination yet, try not to get discouraged. Keep trying until you find what works for you.
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