Fibromyalgia

 by Sharon Ostalecki

Fifteen years ago I was diagnosed with fibromyalgia. It still causes me to endure many days of muscle pain and fatigue. Yet, I maintain a full time job, direct the fibromyalgia non-profit support group Helping Our Pain and Exhaustion (HOPE) and live life to the fullest. So there is hope.

The illness began with a running accident in which I fractured my hip. The pain never went away. It became my constant companion as, during the ensuing years, the bouts of pain grew more intense and frequent.

I also had to endure repeated misdiagnosis from arthritis, to excessive female hormones, to a stressful life and hypochondria. For both my family and I, this undermining of our confidence in medicine increased the anxiety in an already stressful situation. As a result, the painful cycles increased in severity and intensity.
Finally, one physician, in an effort to dismiss me from his practice because my chronic condition was frustrating, referred me to a specialist for an EMG (a nerve conduction test). It was this specialist, a physiatrist, who turned my life right side up.

He discussed my symptoms with attention and patience. I was impressed by the breadth of his knowledge, his openness and his caring attitude. The correct diagnosis of fibromyalgia was a real breakthrough for me. It had taken five years. But it ended the anxiety associated with the many misdiagnoses and gave a name and identity to my nemesis.

Fibromyalgia has been around for centuries. In fact, Cleopatra seems to have suffered with this troublesome condition that the medical profession has only recently begun to understand and diagnose. Although the American Medical Association now recognizes fibromyalgia as a legitimate syndrome and though more medical schools are now educating interns and residents on the condition, some doctors still question its existence.

Fibromyalgia is real and the pain can affect any or all parts of the body with varying intensity. It can be overwhelming. The fatigue can be disabling. In fact, all the symptoms of fibromyalgia are real – the headaches, disturbed sleep, memory problems and many other symptoms associated with this complex and often misunderstood condition.

Dr. Dan Clauw, (University of Michigan, Ann Arbor) explains that each of us has a “volume control” for the severity of pain and that this controller is affected by both genetics and environment (or experience). Studies have shown that persons with FM have a normal “detection threshold” for pain but a decreased “noxious threshold” to many stimuli, including pressure, heat, noise and electrical stimulation. Thus, people with fibromyalgia sense the onset of pain the same as other individuals, but are much more sensitive to pain.

Fibromyalgia is one of the most common chronic widespread types of pain in the US. In fact, it affects more than 6 million people. Its causes are still not fully known. Recent data suggest that changes in the central nervous system may contribute to the chronic pain of this condition.

The term fibromyalgia refers to a complex syndrome characterized by pain amplification, musculoskeletal discomfort and systemic symptoms. On average, patients see five to 50 doctors before they are correctly diagnosed and until that time many are convinced they have a life threatening illness, such as cancer.

The chief complaint with fibromyalgia is pain. Nerve and brain cells can become extra sensitive under certain conditions. This may lead to extra signals being sent to the brain and an increase in the pain that a person feels. A person whose central nervous system has become overly sensitive may feel a type of chronic widespread pain that is typical of fibromyalgia.

The pain may be described as a constant ache, throbbing or burning. Painful spots are found in the muscles of the neck, head, shoulders (especially between the shoulder blades), low back and hips. The pain may begin in one area, but over time it begins to involve more regions until it has spread throughout the body. Fibromyalgia pain is a wandering pain. One day it may present in the back and the next day in the shoulders.

General fatigue is another major complaint with fibromyalgia. Poor sleep contributes to this problem. It is not unusual for individuals with fibromyalgia to sleep as little as several hours or for as much as 12 hours. In either case, exhaustion is common the next day. Instead of waking up refreshed they start their day as if they never slept.

Fibromyalgia occurs in all ages, ethnic groups and cultures. Its gender distribution is nearly equal in childhood, but in adults it is more prevalent in females. Is fibromyalgia genetic? There is a strong familial predisposition to fibromyalgia, with first-degree relatives having eight times the risk of developing fibromyalgia. There are many theories as to the cause of this syndrome. Trauma, infection and stress are three of the most common etiologies.

Living with fibromyalgia is a challenge. There is no cure, but there are ways to manage the pain. Patients must be motivated to take a proactive role in learning how to minimize the impact this disorder can have on their life. Education is “empowering,” and expanding knowledge of fibromyalgia is easy, thanks to numerous online resources.

The first step is to find a physician competent, willing to diagnose fibromyalgia and willing to invest the necessary time to work with the patient. No diagnostic test or x-ray can detect the syndrome. However, physicians can substantiate the diagnosis by checking established universal tender point sites throughout the body, which are more susceptible to pain from applied pressure than would be experienced by a person without the disease.

Exciting new research has also begun in the areas of brain imaging and neurosurgery. Ongoing research will test the theory that fibromyalgia is caused by a defect in the central nervous system that changes the way a person responds to pain.

If you find that treating your fibromyalgia is a challenge to your primary care physician, you may have to educate her or him. Doing so can be very effective, if done in a way that does not threaten or criticize. Approach the subject gently, with scientific articles. The best thing you can do is print off a brief review article about fibromyalgia or its treatment; and don’t take a web site or a patient advocacy article. Physicians should be educated by peer-reviewed scientific information. Especially when there’s a question about the credibility of the disease in their own mind, the last thing they want to do is look at what a patient advocacy group has written about how it should be treated. Be gentle about educating physicians. Don’t take in a lot of information. Take in a single review article, highlighting some of the recent findings with respect to drugs that might work and leave it at that. They don’t really want to be educated a great deal and most physicians don’t have much time to review articles.

The first step in treatment is finding the underlying problem and working together with the physician to correct it. It is not uncommon for fibromyalgia patients to present with thyroid abnormalities, sleep disorders and nutritional abnormalities that have a direct effect on muscle endurance. Many triggers can ultimately lead to fibromyalgia, but to be successful in fibromyalgia treatment, one must treat the trigger first. The next step is education. Fibromyalgia patients need to know how to prevent, manage and survive a flare up.

Prescribed medicines are an important part of fibromyalgia treatment. Lyrica is the first drug approved by the FDA for the treatment of fibromyalgia. Pain relief, improved sleep, more energy and better mood are examples of goals that prescription medicines can help you reach. People with fibromyalgia tend to be more sensitive to medications and often experience side effects such as nausea, drowsiness or lightheadedness. Lower doses of medicines need to be considered for fibromyalgia. Prescribed medicines can provide great benefits to many, so it is worthwhile to work with the physician to find a successful medicine regimen.

Regular exercise, stress management and alternative therapies such as reflexology, meditation, acupuncture and biofeedback can be helpful. However, it is important to realize that a person’s lifestyle up to the point that they develop fibromyalgia has helped to set up the problem. After an individual is plagued by fibromyalgia, unless that individual makes a commitment to changing their former lifestyle, they will be subjected to ever worsening exacerbations of the condition.

The prognosis of fibromyalgia is better than ever. The efforts of individuals, support groups organizations and medical professionals have improved the quality of life for people with fibromyalgia. Better ways to diagnose and treat FM are on the horizon. The symptoms of FM can vary in severity and they often wax and wane, but most patients do tend to improve over time. By seeking new information, talking to others who have fibromyalgia, re-evaluating daily priorities, making lifestyle changes and working hard to keep a hopeful attitude, we can continue to live our life to the fullest. I know, for I am a fibromyalgia survivor!

Dr. Ostalecki is the founder of Helping Our Pain and Exhaustion, (H.O.P.E.) a non-profit support group for fibromyalgia. She has authored the book: Fibromyalgia: The Complete Guide from Medical Experts and Patients. The book is available on Amazon.com and at local book stores. HOPE will be releasing the documentary: Fibromyalgia: Fitting the Pieces Together – spring of 2008. HOPE’s website is: hffcf.org and for information on the book go to: sharonostalecki.com.