Matallana, who is now president of NFA, says she was a partner in an advertising firm when her life turned completely upside down because of her symptoms. “I finally had to stop working in 1995 and spent most of the next two years in bed,” she says. Her husband quit his job and became a consultant working from home so that he could care for her.
“I had a yoga instructor coming to my house three times a week to help me get out of bed. The pain and exhaustion were so bad that there were days that the only activity I was able to do was walk from my bed to the mailbox and back to bed. Each day seemed like an eternity and so I had to focus on just getting through one day at a time.”
People with fibromyalgia can experience pain anywhere, but common sites of pain include the neck, shoulders, back, hips, arms, and legs. In addition to pain and fatigue, other symptoms include difficulty sleeping, morning stiffness, headaches, painful menstrual periods, tingling or numbness of hands or feet, and difficulty thinking and remembering. Some people with the condition may also experience irritable bowel syndrome, pelvic pain, restless leg syndrome, and depression.
Scientists believe that the condition may be due to injury, emotional distress, or viruses that change the way the brain perceives pain, but the exact cause is unclear. People with rheumatoid arthritis, lupus, and spinal arthritis may be more likely to have the illness.
According to ACR, people with fibromyalgia can have abnormal levels of Substance P in their spinal fluid. This chemical helps transmit and amplify pain signals to and from the brain.
Researchers are looking at the role of Substance P and other neurotransmitters, and studying why people with fibromyalgia have increased sensitivity to pain and whether there is a gene or genes that make a person more likely to have it.
Matallana says she felt her suffering was being dismissed as she went from doctor to doctor looking for answers.
“Many doctors suggested that it was just stress,” she says. “Some of them even made references that it was all in my head. I was eventually misdiagnosed as having Lupus.”
When Matallana was 39, a rheumatologist who was just starting his practice, finally diagnosed her with fibromyalgia. “With my doctor’s help, I started to feel better,” she says. “It made all the difference that I had a health care provider who could give me insights as to what fibromyalgia research was showing, and that there were other people feeling what I was feeling.”
Family physicians, general internists, and rheumatologists are the doctors who typically treat fibromyalgia. There is no diagnostic test for it. Doctors make a diagnosis by conducting physical examinations, evaluating symptoms, and ruling out other conditions. For example, fibromyalgia can be distinguished from arthritis because arthritis causes inflammation of tissues and joints and fibromyalgia does not. Another condition with similar symptoms, hypothyroidism, can be confirmed with a blood test.
Diagnostic criteria set forth by ACR include a history of widespread pain for at least three months and pain in at least 11 of 18 tender point sites.
Drug name: Lyrica (pregabalin)
Manufactured by: Pfizer Inc.
Approval date: June 21, 2007
Approved for: Lyrica is approved for treating fibromyalgia in adults who are 18 years and older. Pfizer has agreed to perform a study of the drug in children with fibromyalgia and a study in breastfeeding women.
How it works: Lyrica reduces pain and improves function in patients with fibromyalgia. The mechanism of action is unknown, but there is some data suggesting that it has effects on the release of neurotransmitters in the brain. Neurotransmitters are chemicals in the brain that transmit signals from one neuron to another. People with fibromyalgia experience pain differently than people who don’t have the condition. Treatment with Lyrica reduces the level of pain in some patients.
Effectiveness: The effectiveness of Lyrica in treating fibromyalgia was established in two randomized, placebo-controlled trials of approximately 1800 people. These trials showed that treatment with Lyrica in doses of 300-450 mg per day reduced pain and improved function in patients with fibromyalgia. They also demonstrated that symptoms of fibromyalgia worsened when Lyrica was withdrawn.
Safety: The most common side effects of Lyrica include dizziness and sleepiness, blurry vision, weight gain, trouble concentrating, swelling of the hands and feet, and dry mouth. Allergic reactions can also occur. These are rare, but potentially serious. FDA advises patients to talk with their doctors about whether using Lyrica will impair their ability to drive.
Walking, jogging, biking, gently stretching muscles, and other exercises also can be helpful.
People with fibromyalgia may find relief of symptoms with pain relievers, sleep medicines, antidepressants, muscle relaxants, and anti-seizure medications. But medication is just one part of the treatment approach.
What helped Matallana was a combination of medicines for pain and sleep, treatment for some of the overlapping conditions like migraines and irritable bowel syndrome, and a combination of water therapy, massage and yoga. Walking, jogging, biking, gently stretching muscles, and other exercises also can be helpful.
Emotional support also is essential, Matallana says. “My husband always believed me, and when you have that kind of support it makes a difference. It’s really about facing chronic pain for the rest of your life. So dealing with the emotional impact and not just the physical side is very important.”
I am 60 and have been dealing with Fybromyalgia for most of my life. Children as young as 2 have been diagnosed with it. I think I have finally found something to help me. I have been on the low oxalate diet for 3 weeks and I am a lot better. My energy level is up and my pain is a lot better. I plan to make this diet a permanent thing in my life. Doylene