Mariann emerged from a car accident 32 years ago unharmed, but the next day she woke up with lower back and leg pain. A few weeks later, her neck and shoulders began to hurt. Then, a second car accident caused whiplash and an emotionally traumatic reaction to the event. Her pain from these accidents became chronic, so Mariann sought doctors who could help her understand what was wrong and how to treat it.
This painful, exhausting and difficult phase that Mariann calls her “pain life,” left her bed-ridden for an entire year, unable to take care of her children or work, relying on her husband to take care of everything, and her mother to drive her around to appointments.
It took nearly five years, but eventually her doctor diagnosed her with fibromyalgia.
What is Fibromyalgia?
There are over 5 million Americans suffering from fibromyalgia, a syndrome that is characterized by extensive pain, tenderness and fatigue. The pain and tenderness associated with fibromyalgia may travel to different areas of the body and often has no identifiable cause. Fibromyalgia sufferers may also experience additional symptoms, including:
- Chronic fatigue.
- Trouble sleeping.
- Morning stiffness.
- Headaches, including migraine.
- Painful menstrual periods, and other pain syndromes.
- Tingling, numbness or weakness in hands and feet.
- Problems with thinking and memory (sometimes called "fibro fog").
- Depression or mood issues.
- Irritable bowel syndrome.
According to the National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS), people with fibromyalgia can have two or more chronic pain conditions (such as chronic fatigue syndrome, inflammatory bowel disease, temporomandibular joint dysfunction [TMJ]) at the same time.
Mariann personally experienced widespread pain along with draining fatigue and joint pain in the jaw.
What Causes Fibromyalgia?
The pain associated with fibromyalgia is characterized as centralized pain. Some research indicates that there is a dysfunction of pain centers in the brain that amplify or “turn up” the pain response. People with centralized pain (often with no identifiable tissue or nerve damage) may experience pain from ordinary touch or pressure.
Still, the exact cause of fibromyalgia is unknown at this time. The cause may vary from person to person. Often, there may be a triggering factor such as physical stress, emotional stress, trauma, or injury.
In Mariann’s case, the two automobile accidents were possibly the triggering factors for her fibromyalgia.
Diagnosing & Treating Disease
Because fibromyalgia is not widely understood, diagnosing the disorder may be somewhat challenging. While there are no diagnostic (laboratory and imaging) tests that definitively diagnose fibromyalgia, doctors may order certain tests to rule out other causes. Clinical examinations, medical history, and self-reported symptoms, in addition to other variables, are considered for a diagnosis.
Fibromyalgia can be challenging to treat. Symptoms often vary from person to person, and what may work for one person with fibromyalgia might not work for others. It takes an average of 5 years to diagnose fibromyalgia.
There is no cure for fibromyalgia; however, it is treatable. Treatment usually requires a “team” approach, involving your doctor, physical therapist, and other health care professionals, and most importantly, the patient, playing an active role in symptom management. People with fibromyalgia have found success with medications and non-drug treatments such as physical exercise, behavioral therapy, massage therapy, and acupuncture, to name a few.
At the time Mariann was diagnosed (pre-Internet), she read the very few available books and articles she could find to educate herself on the condition. She teamed up with her rheumatologist to help manage her pain. Mariann also joined a chronic pain support group where she learned from others who had the same experiences.
“Staying in bed was probably the worst thing I could do,” she said. “Because I just became weak and, of course, depressed…[I told myself] if I'm going to continue living, [I better figure out] what I need to do to face living with this pain every day, having a good life and functioning."
Living with Fibromyalgia
Fibromyalgia is a chronic condition that may possibly last a lifetime. In some people, the condition does improve over time. In addition to working closely with your team of health care providers to find a treatment plan that works for you, there are things a person can do to manage the disease and to improve quality of life.
Here’s what Mariann advises:
- Taking it one day at a time, always. Let tomorrow be tomorrow.
- Getting out and moving whenever possible because staying home isn’t going to stop the pain anyway.
- Finding ways to enjoy life and people despite the pain. Remember that pain is with you, but it is not you.
- Helping others whenever possible. Support groups are a great way to help others learn about the condition.
- Boldly choosing a self-definition: “I am a person with pain, but I am not pain.” “I do not think of myself as a patient.”
- Listening to music for 20 minutes at a time to reduce blood pressure and pulse and temporarily lower pain (This really works!).
- Learning to meditate.
- Having hope.
Hear more from Mariann herself in these patient videos:
- My Symptoms & Coping with Fibromyalgia: Mariann Farrell
- My Fibromyalgia Healthcare Team: Mariann Farrell
- Managing my Fibromyalgia Pain: Mariann Farrell
- Living with Fibromyalgia: Mariann Farrell
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