Fibromyalgia Fixes: Treatments Worth Trying
By Marie Karns
While there is not as yet a fibromyalgia cure, the key to finding relief from the pain and fatigue is usually a combination of existing fibromyalgia treatments and therapies. It may take some trial and error to find an effective combination of treatments. Here are several options worth trying:
Medications
Currently, there is only one FDA-approved drug for use as a fibromyalgia treatment: pregabalin (Lyrica). Lyrica was originally developed as an anti-seizure medication, but has since shown benefits in relieving anxiety, some sleep problems and pain in people with fibromyalgia. Another anti-seizure medication, gabapentin (Neurontin) is sometimes used off-label (meaning it is used for but not FDA-approved for a condition) as a fibromyalgia treatment.
Four other types of medications have also been shown to provide symptom relief. Doctors can and do prescribe these medications to fibromyalgia patients, sometimes at doses specific for treating fibromyalgia symptoms. They include:
• Analgesics, including tramadol (Ultracet, Ultram)
• Antidepressant medications, such as amitryptiline hydrochloride (Elavil, Endep), duloxetine (Cymbalta), fluoxetine (Prozac) and paroxetine (Paxil)
• Muscle relaxants, such as cylobenzaprine (Cycloflex, Flexeril)
• Fatigue medications, such as modafinil (Provigil)
Other medications are being investigated for their usefulness in people with fibromyalgia, as well.
Exercise
Physical activity is has been shown to be a valuable fibromyalgia treatment, but activities must be chosen carefully and started at a low level.
“Deconditioned muscles are a potent pain generator in fibromyalgia,” says Kim Jones, PhD, a fibromyalgia researcher at Oregon Health & Science University in Portland. “It’s not fair to tell people with fibromyalgia, ‘just exercise and you’ll feel better,’ because many people have tried that and they end up in bed for two weeks recovering,” she says.
“The trick is to exercise slowly enough that you can condition muscle without generating pain, and we’re finding perhaps this can be done more efficiently if people with fibromyalgia are given the drug pyridostigmine (Mestinon) prior to exercise,” she says.
Jones and her colleagues discovered that most people with fibromyalgia do not secrete sufficient growth hormone during vigorous exercise. Growth hormone helps build muscle tissue, so not having enough of it may contribute to exercise-induced muscle pain in people with fibromyalgia. Pyridostigmine blocks a hormone called somatostatin, which inhibits the production of growth hormone. The drug is FDA-approved to treat myasthenia gravis, an autoimmune disorder in which control of muscles is gradually lost. Jones’ study suggests the drug can normalize growth hormone levels in fibromyalgia patients during exercise so that they can better tolerate physical activity. However, the drug has been used only experimentally in this way.
Jones also says a product called Spray and Stretch, a spray-on skin refrigerant that numbs pain, can be helpful when people with fibromyalgia start an exercise program. “Using a skin refrigerant before stretching can help make the workout session less painful, reducing the chance that the patient will stop trying to exercise and allowing them to get the benefits of being physically active,” says Jones.
Biofeedback
People who use biofeedback feel they have more control over their condition. Biofeedback teaches people how to relax clenched or tight muscles or change other physiological functions, like slowing a racing heartbeat. “Biofeedback equipment gives a patient information about specific physiological functions so they can work to control those functions,” says Mark D. Litt, PhD, a professor of behavioral sciences at the University of Connecticut Health Center in Farmington, and researcher of biofeedback in people who clench their jaw muscles and have temporomandibular joint (TMJ) pain, which is common in those with fibromyalgia.
“My patients are given information about the state of chewing muscles along their jaw joint, the ones that make your mouth clench,” Litt says. Through electrodes attached to the body, a machine lets people know when their muscles clench. People then try ways to lower the muscle tension. “Most people find they can do it if they can find a way to relax,” Litt says. “For example, some people go into mini trances; some people count in their heads.”
McKiernan says biofeedback therapy taught her basic relaxation techniques, including visualization. With eyes closed, she relaxes and pictures a radio-like box, customized with dozens of dials labeled with fibromyalgia symptoms, such as Pain, Worry, Anxiety, Stress and so on. If she’s having trouble falling asleep, she visualizes turning the “Awakeness” dial down and cranking the “Sleepy” dial up. Sometimes, she admits, she needs to adjust the dials again and again, but the biofeedback exercise helps. “It’s been useful to me to feel like I have a certain amount of control,” she says.
Fibromyalgia patients have been benefiting from other types of biofeedback, too. Neurofeedback is a type of biofeedback that monitors and records brain waves using an electroencephalograph (EEG) or similar instrument, explains David V. Nelson, PhD, of the Comprehensive Pain Center, Department of Anesthesiology and Psychiatry, at Oregon Health & Science University in Portland. In a recent British study, neurofeedback, which helps improve mental concentration, was shown to improve memory.
How does it work? Brain waves normally range from slow to fast, indicating the level of activity in the brain, he explains. Some people with fibromyalgia have shown brain wave abnormalities. For instance, they might have more active brain wave activity at night, which robs them of deep, restorative sleep, and have less active brain wave activity during the day, which contributes to fatigue and “fibro fog.”
Nelson is currently conducting a study in which tiny pulses of electromagnetic stimulation boost the slower daytime brain waves of people with fibromyalgia. He hopes to show that this type of brain wave therapy can help normalize brain activity so that fibromyalgia patients feel less fatigued and can then better tolerate other treatments, such as exercise.
Stress reduction
When a person in pain experiences stress, they feel more pain. In people with fibromyalgia, stress pathways seem to criss-cross pain-processing pathways in the brain. In other words, stress can sometimes stimulate more unpleasant pain. In a recent study funded by the Arthritis Foundation and the National Institutes of Health (NIH), Laurence A. Bradley, PhD, a professor of medicine at the University of Alabama at Birmingham, and his colleagues compared pain perception and neurological responses of 16 women with fibromyalgia to 19 healthy women as they revisited stressful personal events, like a divorce or the death of a loved one.
To measure pain responses, the researchers applied heat to the women’s forearms. Even though all the women thought about equally stressful events, the fibromyalgia patients reported higher levels of pain unpleasantness from the heat, and their brain scans showed more activity in the parts of the brain that process pain magnitude, compared to healthy controls.
“Teaching people to better cope with stressors may reduce the impact of those stressors on the perception of the unpleasantness they feel,” Bradley suggests.
Lifestyle adaptation
Kristin Ohlson, 53, a writer from Cleveland, developed fibromyalgia 10 years ago during a time of great job and personal stress. “I sat crunched up in a chair at my desk a lot and developed an intense pain in my lower back,” she recalls. The excruciating pain soon radiated throughout her body, and she had trouble sleeping. To improve her sleep, she bought a memory foam mattress topper, which helps cushion her body at night. She also padded her office chair. “I sit on an egg crate cushion,” she says. “I’m just careful about hard surfaces.”
“You can live really well with a chronic illness or disability,” says McKiernan. “It’s all about learning how to manage what’s going on and rearranging your life a little bit – or sometimes a lot.”
“I recognized that my allergies and reactions to chemicals were really tied into my fibromyalgia, so I’ve reduced the chemical load in my life,” she says. She changed to scent-free cleaning and personal care products. She avoids cigarette smoke altogether.
It helps to look at lifestyle adaptations in fibromyalgia with acceptance, rather than embarrassment, McKiernan says. “Prescribing glasses – that’s easy – people don’t even think of glasses as an adaptive device, but they are.” No one needs to apologize for wearing glasses, she says, and no one should have to apologize for making accommodations for fibromyalgia.
McKiernan even changed careers to help manage her condition. Before fibromyalgia, McKiernan worked as a chef, but the job entailed long hours at the chopping block and little control over her environment. People wearing perfume, for example, would visit the restaurant, which would set off McKiernan’s chemical sensitivities. Now she makes a living pet sitting, dog walking and teaching performance classes to students who know in advance to come to the studio scent-free.
Approaches ahead
Jones and other experts believe we’re heading toward a disease management model with fibromyalgia, using a tailored combination of medication, exercise and lifestyle strategies to improve symptoms. “There’s a biochemical underpinning [in the dysregulated pain pathways] that needs to be corrected,” she says, “and then there are lifestyle improvements, too.” An individualized combination of approaches seems to work best, she says.
With a multi-system approach that included exercise, biofeedback, sleep habit improvements and other treatments, Shane, now 24 and teaching theater classes to kids in Santa Monica, Calif., tamed his fibromyalgia symptoms and was able to graduate from college without missing a semester. He admits that sticking vigilantly to his management program takes a lot of persistence and effort.
“You have to remind yourself continually to do it,” he says. At one time he could barely lift his arms above his shoulders, but now he can lift 7-pound weights with each arm. He also makes an effort to incorporate lighter activities into his plan. “It’s good to make sure you do one or two things that are fun every day,” he says. “I notice when I’m having a lot of fun and I’m really happy, I feel my best.”
I am so sorry that you have this disease at such a young age. I'm 47 and hate the way it makes me feel and all the things I'm missing out on because I can't move after working all day. I wish there were some easy answer, all the recommendations from those who post here are excellent and since this is such an individual problem, nothing works the same for everyone. You just have to try things singly and then in combination to find out what works best for you. As for your boyfriend, I know you have invested three years in this young man and especially at your age, that's a long time. However, additional stress, depression, anxiety and anger all make fibromyalgia worse and it sounds as though he could be contributing to a lot of those kinds of feelings, if you have them. As we "old timers" like to say, there's a lot of fish in the sea and you need someone who is sensitive to your condition and helps you get through it, not tears you down and doesn't help you, emotionally and physically. He is young yet and I'm sure will become a great guy someday but you need someone mature enough to be supportive now. You have to remove any toxic relationships you can for your own sake. If you sat down with him and explained how much this hurts you and is damaging your feelings for him, do you think it would help him think about it differently? If so, I would. If not, I'd move on. It will hurt emotionally but your pain level physically is high and you don't need anything adding to it. Please know I will be thinking about you and your situation and praying for you both. Hang in there and keep your spirits as high as you can.