The Stages of Fibromyalgia
If you’ve been diagnosed with fibromyalgia or are a caregiver to a loved one who’s suffering, you know how hard it is to physically and emotionally manage this condition. But there are treatments that can help. Get expert advice to ease symptoms and 5 tips to help soften the burden on caretakers…
Your body aches and you feel exhausted, yet you’re unable to sleep.
“Basically, you blew a fuse,” says internist Jacob Teitelbaum, M.D., medical director of the Fibromyalgia and Fatigue Centers and author of From Fatigued to Fantastic.
“Fibromyalgia represents an energy crisis,” says Dr. Teitelbaum, who suffers from the condition. “You’re spending more energy than you can make.”
If you’re wondering why or how you developed the disorder, don’t expect an easy answer. Fibromyalgia may run in some families and often follows infections or physical or emotional trauma. Or it appears for no reason at all. Women are 4-7 times more likely to have it than men, but the reasons are unclear.
Emotionally, you may be feeling confused, afraid and angry when neither you nor your doctor knows what’s happening to your body. In fact, your physician may even tell you there’s no medical problem and refer you to a psychotherapist.
“You may see eight doctors before you know what you have,” Dr. Teitelbaum says. “So you and your family may be given the impression that you’re crazy.”
It took Patricia Stephens, 62, author of Reversing Chronic Disease: A Journey Back to Health, 7 years before doctors put a name to her symptoms.
“I felt anxiety and fear,” Stephens says. “I was afraid of losing my job as a teacher, that I couldn’t raise my children or keep my marriage together, and that I would lose purpose and productivity.”Researchers are investigating hormones, immune system differences, brain chemistry and genetics for answers.
Because sufferers are especially sensitive to physical pain, they suspect that nervous-system problems may be a culprit.
Fibromyalgia pain generally targets 18 points on both sides of the body where pressure causes tenderness.
If sensitivity lasts at least three months in 11 out of 18 pressure points or muscle locations, you may have fibromyalgia, according to the American College of Rheumatology.
Making matters more confusing, fibromyalgia sufferers may also be diagnosed with other conditions, including irritable bowel syndrome, a gastrointestinal disorder characterized by either constipation or diarrhea; headaches; and/or temporomandibular joint syndrome (TMJ), which is inflammation of the jaw joint.
There are steps you can take to ease symptoms. Dr. Teitelbaum recommends a regimen he calls “SHINE”:
- Sleep. For a better night’s rest, keep the bedroom at 65°F; take a hot bath before sleep to relax your muscles; and spray pillows with lavender oil, which helps promote sleep, he advises. Take 75-150 milligrams of magnesium, a natural relaxant, before bed. And avoid caffeine. Aim for 8-9 hours of shut-eye a night.
- Hormones. Ask your doctor to test you for a possible hormone deficiency.
- Infections. Lack of sleep may raise your vulnerability to viral or yeast infections. If you’re sick, see your doctor for treatment right away.
- Nutritional supplements. Ask your doctor to test your vitamin levels, and take supplements as needed.
- Exercise. Try yoga. Women with fibromyalgia who practiced yoga for eight weeks had a 24% pain reduction, 30% fatigue reduction and 42% depression reduction, according to a 2010 study at Oregon Health & Science University.
Also, consider having a massage. This may sound masochistic, given your sensitivity to pressure. However, fibromyalgia patients who got 30-minute massages twice weekly for five weeks slept longer with decreased restlessness during the night and suffered less anxiety and depression, according to a researchers at the University of Miami School of Medicine. They also registered lower levels of substance P, a neurotransmitter that raises pain sensitivity, which is often 2-3 times higher in fibromyalgia sufferers than people without the disorder.
Education, Exercise and Self-Management
Conventional treatments typically address pain and sleeplessness. In 2007, pregabalin, an anti-seizure drug usually used to treat epilepsy, was the first drug approved to treat the physical pain of fibromyalgia.
Researchers believe the drug works by minimizing neuron transmissions that affect pain nerve signals.
Your doctor may prescribe duloxetine or milnacipran. These are antidepressants that increase brain chemicals to calm pain signals.
Besides one of these medications, your doctor also may suggest nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen to ease pain and stiffness.
But even if you take medications, you may still feel achy and fatigued — and frustrated that you’re not 100%.
“Having fibromyalgia can increase the risk of depression and anxiety,” says geriatric psychiatrist William Uffner, M.D., medical director for the Older Adult Program at Friends Hospital in Philadelphia.While being treated for fibromyalgia, continue with self-care steps, including the SHINE regimen.
Here are additional steps that can help:
- Assess your mood. If you’re a grouch when you’re hungry, you may be low on cortisol, an adrenal stress hormone, says Dr. Teitelbaum. A holistic physician can check cortisol levels and perhaps prescribe a very low dose of cortisol. Go to the American Board of Integrative Holistic Medicine website for a list of board-certified holistic physicians.
- Record your sleep. Sleep disturbances may be caused by sleep apnea, a condition in which breathing is interrupted, or restless-leg syndrome, which causes involuntary leg movements. Dr. Teitelbaum suggests videotaping yourself while sleeping: If your legs are twitching or you stop breathing periodically, see a sleep specialist.
- Supplement your energy. Dr. Teitelbaum recommends taking ribose, a nutrient involved in energy production, to raise energy levels. “Studies show that patients’ energy increased 61% after three weeks, and sleep improved,” he says. His suggested dose is 5 grams three times a day for three weeks.
A recent breakthrough is the discovery of a new retrovirus, xenotropic murine leukemia virus-related virus (XMRV), found in most people with chronic fatigue syndrome (CFS).
“Within a year or two, there will be a test for CFS, which tends to overlap with fibromyalgia,” Dr. Teitelbaum predicts.
Though the link between CFS and fibromyalgia hasn’t been determined, the conditions may share a common cause, which is why the discovery of the virus is important. Researchers suspect that XMRV may lie behind other illnesses too.
A Vital Part of Caregiving
As a caregiver, you may feel stressed and tired as you take on more responsibilities. You may also start to question whether your loved one is actually ill.
“You want to support your loved one, but you’re struggling with the extra load,” Dr. Teitelbaum says.Steps you can take:
- Offer support. Your loved one already feels alone — and maybe foolish, for having an illness their doctor isn’t validating. “The No. 1 thing patients need to know is that you love and accept them,” Dr. Teitelbaum says.
- Educate yourself. Learning about fibromyalgia can help you understand what your loved one is going through.
- Avoid burnout. Learn to say “no” sometimes, says Dr. Teitelbaum. “Otherwise, you’ll be useless to the person with the disease. Or you’ll get sick yourself.”
- Reserve some independence. Continue to do things you love apart from your loved one: hobbies, meeting up with friends, exercise. This will help you focus on the parts of your life that are going well, Dr. Uffner says.
- Get support. Ask your doctor to refer you to a caregiver support group.By Dorothy Foltz-Gray