Feeling Better with Fibromyalgia
Fibromyalgia is a chronic pain disorder that affects 1 to 4 percent of the population. Although anyone can get it, 80 to 90 percent of fibromyalgia sufferers are midlife women. Read on to learn more about this mysterious condition.
The Inside Story
Fibromyalgia is a disease of central nervous system processing. Your brain has a network of neuropathways governed by chemicals, such as serotonin, dopamine, norepinephrine, and GABA.
“When the flow of these chemicals gets disrupted for whatever reason, you can experience bizarre symptoms,” says Nathan Wei, M.D, F.A.C.P., F.A.C.R., director of the Arthritis Treatment Center in Frederick, Md.
Symptoms of fibromyalgia are subtle and cumulative.
“Fibromyalgia is like an accident that happens in very slow motion,” says fibromyalgia specialist Seth Lederman, M.D. and CEO of Tonix Pharmaceuticals, which is developing a drug for the condition.
Symptoms include chronic, widespread pain; low energy; and sleep problems, such that you wake up feeling as tired as when you went to bed. You might also experience headaches, migraines, and bladder issues.
Fibromyalgia can occur by itself. But people with rheumatoid or other types of arthritis or lupus are more likely to have it.
There’s no known cause, cure, or test to detect fibromyalgia. Diagnosing fibromyalgia is a matter of ruling out other medical issues, such as thyroid disease, rheumatoid arthritis, or lupus, which can occur by themselves and mimic fibromyalgia symptoms.
The good news?
“Most fibromyalgia patients do get better,” Wei says.
If you think you may have fibromyalgia, here’s what you can do to aid in your own recovery.
Treatment Starts with You
See the right doctor. Fibromyalgia was once something that was “all in your head.” Fortunately, that mindset is changing.
Still, for the best treatment, “find a doctor who specializes in the condition, preferably someone who has graduated from medical school in the last 15 years,” Lederman says. That doctor could be your primary-care physician, a rheumatologist, or even your gynecologist.
A sign you’re at the right place: Your doctor asks you to complete the fibromyalgia impact questionnaire, a 21-question survey that’s designed to measure fibromyalgia’s symptoms and functional limitations. Medically managing fibromyalgia takes longer than a typical 15-minute appointment.
“The key thing is to have a good relationship with a doctor who really understands fibromyalgia and is interested in treating it,” Lederman says.
Treatment may include medications, such as gabapentin (Neurontin), pregabalin (Lyrica), or duloxetine (Cymbalta). These prescription drugs can help provide temporary relief by limiting the brain’s and spinal cord’s release of chemicals that communicate pain.
To assess if treatment is working, you may be asked to complete a patient global impression of change (PGIC), a seven-question survey that will ask you to gauge whether you’re feeling better or worse.
“The PCIC is the gold standard,” Lederman says.
Take Back the Night
It can be hard to get a good night’s sleep with fibromyalgia.
“Most fibromyalgia patients say they wake up feeling like they haven’t had the benefit of a good night’s sleep, even though they typically fall and stay asleep normally and don’t wake up too early,” Lederman says.
That’s because fibromyalgia can activate your brain throughout the night to nudge you out of a deep sleep. A quality-sleep deficit can make fibromyalgia pain worse.
“One feeds on the other and leads to a downward spiral,” Lederman says.
To improve the quality of your shuteye, practice good sleep hygiene: Get up at the same time every day and go to bed at a regular time too. Avoid caffeine, starting in the afternoon. Wind down before bed by listening to relaxing music and making your bedroom as quiet and dark as possible.
Prescription sleep aids, such as zolpidem (Ambien), aren’t recommended to treat fibromyalgia because they can be addictive if used long term.
But a promising, new non-addictive sleep medication, Tonmya, is on the horizon that’s designed to specifically help fibromyalgia patients get more restorative sleep. Developed by Lederman and his team, Tonmya isn’t on the market yet. But if you’re interested in participating in the clinical trial for this medication, visit www.affirmstudy.com.
Make Yourself Move
When your fibromyalgia flares up, you may be in too much pain or too tired to do much. But don’t take it too easy. Research shows that regular exercise, such as swimming, cycling on a stationary bike, or using an elliptical trainer, can reduce pain, help you feel more energetic, and improve your overall quality of life.
Still, a little goes a long way.
“Start slowly,” Wei says, even on days when you feel good.
“Exercise for a minute a day. After a week or two, do two minutes per day, and gradually work up to 30 minutes,” he says. If you push yourself and do too much too soon, you can feel worse.
Try the MELT Method
With fibromyalgia, your body’s connective tissue (fascia) becomes stiff and dehydrated, which can, in turn, increase your perception of pain. But MELT, a new self-treatment program, is designed to help.
With MELT, you’ll gently roll soft balls and rollers over your body for about 10 minutes each day to gently self-massage your body’s connective tissue.
“MELT helps reprogram your nervous system through your fascia,” says Sue Hitzmann, author of The MELT Method and corresponding website. “It’s a way to boost your body’s natural ability to repair itself.”
Hitzmann, a craniosacral and neuromuscular therapist, developed the self-healing technique in 1998.
Today, there are 2,000 MELT instructors worldwide, many of whom are physical therapists. To find a MELT instructor who can help get you started with the home-based program, just search online for “physical therapist,” “MELT,” and your location.
See a Therapist
Fibromyalgia can be stressful. If you feel overwhelmed by the illness, see a therapist who practices cognitive behavioral therapy (CBT). This form of psychotherapy focuses on helping you think positively and redefine your beliefs about illness, to help you feel more hopeful.
“Under the CBT umbrella are guided imagery, self-hypnosis, and practical strategies, such as using a planner because many patients with fibromyalgia have trouble remembering things,” Wei says.
People with fibromyalgia who smoke feel the pain of the condition more intensely, according to a study in Mediators of Inflammation. Better fibromyalgia control is yet another reason to quit smoking.
For help with kicking the habit, call 800.QUIT.NOW. The national quitline is staffed by trained tobacco-cessation specialists.
Overall, the process of getting better with fibromyalgia can take time, so be patient.
“It’s a complicated disease,” Wei says. “But don’t give up. Keeping working at it and you’ll gradually get back on track.” BW