RA and Fibromyalgia: An Interview with Karen Lee Richards

Patient Expert

Today, May 12, 2011 is National Fibromyalgia Awareness Day. As many of our users  live with both RA and fibromyalgia, Karen Lee Richards - the Community Leader of our Chronic Pain site - and I interviewed each other about RA and fibro. Part One of this interview is about fibromyalgia symptoms, treatment and history.You can read Karen's interview with me on Chronic Pain.

Karen first became ill in 1989, but didn't receive a diagnosis of fibromyalgia until seven years later. Karen's career as a writer and patient advocate grew out of her determination to learn more about her own illnesses and wanting to raise awareness about fibromyalgia and ME/CFS. She is the co-founder of the National Fibromyalgia Association

What is fibromyalgia?

Fibromyalgia (FM) is a chronic pain illness that affects 2-5 percent of the population.   The majority of people with FM are women, but it can also strike men and children. The main symptoms of FM are widespread pain, fatigue and sleep disturbances, as well as cognitive functioning problems like memory loss and difficulty concentrating.

The pain of FM is chronic and can range from mild to profound.   It affects different parts of the body at different times.   Sitting or lying down for extended periods of time tends to increase the pain and stiffness.

Fatigue is often the most difficult FM symptom to describe to others because they think you're just a little tired.   However, it's a pervasive, all-encompassing exhaustion that can interfere with even the most basic and simple daily activities.   I describe it as feeling like someone pulled my plug and disconnected me from my power source. Research has shown that FM patients spend little or no time in deeper stages of sleep because their deep sleep is repeatedly interrupted by bursts of awake-like brain activity.   Since this is the stage of sleep during which the body replenishes itself, fibromyalgia patients usually wake up feeling as if they hadn't slept at all.

Most fibromyalgia patients also report other overlapping conditions, including allergies, irritable bowel or bladder, headaches/migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems. You can read more in the fibromyalgia area of the Chronic Pain site.

What causes fibromyalgia?

For a long time fibromyalgia was thought to be a muscle and soft tissue condition. However, more recent research is revealing that it is actually a malfunction of the central nervous system, which leads to over-sensitization.   As a result, simple things that would not cause pain for the average person, such as a firm handshake, can be excruciating for someone with FM.

Scientists have also found that there appears to be a genetic component to FM since it often affects multiple family members.   However, even though someone may have a genetic predisposition to FM, the symptoms usually don't show up until triggered by a trauma to the body, like an illness or injury.

Who treats fibromyalgia?

Initially, rheumatologists treated FM because it was thought to be a rheumatological disorder. Although some rheumatologists still treat FM patients, it's more a neurological problem and more neurologists are opening their doors to FM patients. Some pain specialists are willing to treat it while others are not. There are now three medications approved for treating FM and more family doctors are familiar with the condition and will treat their FM patients themselves rather than referring them to a specialist.

The best answer to "Who treats fibromyalgia?" is whatever doctor you can find who understands FM, will listen to you and work with you to find the treatment plan that works best for you  regardless of their specialty.

What kinds of treatments are available?

The best control of FM uses a combination of medication, alternative therapies, exercise and lifestyle changes.   It takes trial and error to find which treatments work best for each individual.

There are three FDA approved drugs for treating fibromyalgia - Lyrica, Cymbalta and Savella. You can read more in my comparison of these meds. Other drugs that can be prescribed off-label for FM include tramadol, Ultracet, Xyrem, Neurontin, etc.

Alternative therapies that may be helpful include myofascial release therapy, acupuncture, massage therapy, yoga, tai chi and nutritional supplements.

When fatigue is a serious problem, doctors may prescribe Provigil or the newer version, Nuvigil, drugs developed for narcolepsy, but which can also help improve energy levels for FM patients.   Personally, I've found that taking 300 mg of CoQ10 supplements each day has made a big difference in increasing my energy level.

Please tell us about the history of fibromyalgia

There is evidence that FM may have been around for centuries - possibly as far back as Old Testament times. The Biblical account of Job's physical anguish sounds a great deal like fibromyalgia.   "I, too, have been assigned months of futility, long and weary nights of misery.   When I go to bed, I think, `When will it be morning?'   But the night drags on, and I toss till dawn...Depression haunts my days.   My weary nights are filled with pain as though something were relentlessly gnawing at my bones."   (Job 7:3-4 and 30:16-17 - NLT)

Another famous person in history who suffered fibromyalgia-like symptoms was Florence Nightingale. She became ill while working on the front lines during the Crimean War. She never really recovered, suffering unrelenting pain and fatigue until her death.

FM has been called by different names.   Beginning in the 1600s, it was called muscular rheumatism.  In 1904 it was renamed fibrositis and renamed again to fibromyalgia in 1976.

Another important date in FM history is 1990 when the American College of Rheumatology developed diagnostic criteria for FM to be used for research purposes.     From that point on, FM research has steadily increased.   Then finally in 2007 the FDA approved Lyrica to be used in treating FM.

Part Two of my interview with Karen covers RA and Fibromyalgia similarities and differences, coping tools and the future of fibromyalgia treatment.

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Lene is the author of the award-winning blog The Seated View.