Fibromyalgia - Troubling for Sufferers and for Their Doctors

Fibromyalgia - Troubling for Sufferers and for Their Doctors

Fibromyalgia - Troubling for Sufferers and for Their Doctors

Fibromyalgia has come a long way from being an “it’s all in your head” disorder to being a disease with a better defined biochemical mechanism. There's hope now more than ever

     
Fibromyalgia - Troubling for Sufferers and for Their Doctors
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People who suffer from fibromyalgia bear the burden of not only the disease but also the search to confirm a diagnosis and receive successful treatment as well.

Because of the difficulties of diagnosing the disease, the similarity to other disorders, its relationship with depression and the limited treatments available, many clinicians have been skeptical about whether or not fibromyalgia is even a "real disease", rather than either a depression side effect or some type of hypochondria. However, millions of people worldwide, 90% of them women, who have been diagnosed with fibromyalgia, beg to differ. And science is finally on their side.1

Fibromyalgia is defined by its symptoms and is considered to be a chronic condition characterized by body aches, widespread pain, sleep problems, extreme fatigue, depression, anxiety, forgetfulness and other symptoms such as light, sound and touch  sensitivity, in combination with tenderness of specific areas (muscles and tender points) on the body. Fibromyalgia is also classified as a type of soft tissue or muscular rheumatism, as opposed to arthritis, which causes inflammation, joint damage or deformities. 

Why is Fibromyalgia so hard to diagnose?

Fibromyalgia’s symptoms are similar to many other disease symptom clusters.2

The symptoms of lupus, an autoimmune disease, include joint pain muscle aches, fatigue, rash, sensitivity to sunlight among many other possible indicators. There are several forms of lupus and the symptoms present differently by type and by individual experience.

The symptoms of chronic fatigue syndrome include muscle and/or joint pain, debilitating fatigue, headaches, memory loss, difficulty with concentration, forgetfulness, depression, numbness and generalized weakness.           

The symptoms of depression include difficulty concentrating, remembering details, and making decisions, fatigue and decreased energy, insomnia, early-morning wakefulness, or excessive sleeping, irritability, restlessness, persistent aches or pains,  headaches, cramps, or digestive problems that do not ease even with treatment, persistent sad, anxious, or "empty" feelings of guilt, worthlessness, and/or helplessness.

The symptoms of rheumatoid arthritis include joint pain and swelling, fatigue, difficulty sleeping, weakness, joint tenderness, morning stiffness, weight loss and more.

Fibromyalgia can also be confused with irritable bowel syndrome, post traumatic stress disorder and endometriosis. 

There is no definitive diagnostic test 

One of the best ways to unequivocally identify a disease is to establish a definitive diagnostic test that proves its existence. Or, at a minimum, a set of unique symptoms that distinguish the disease from others. Fibromyalgia claims no such definitive diagnostic test. This means that when an individual presents with the typical cluster of symptoms, doctors usually diagnose fibromyalgia by ruling out other diseases rather than by positively identifying fibromyalgia.  

Rheumatoid arthritis sufferers can often be identified by irregularities in blood tests (elevated SED rate, presence of RA factor, etc). Those with lupus, also a difficult disease to diagnose, typically present with a pattern of symptoms plus elevated SED rate, C Reactive protein, possibly anemia and other abnormal blood tests. Even depression and chronic fatigue syndrome (another disorder that has had difficulty establishing itself as a unique disorder) now have well-accepted patterns of symptoms that provide reasonable diagnostic certainty.  

When all of these other conditions (and maybe more) are eliminated, fibromyalgia is the “last man standing.” 

Doctors admit that fibromyalgia is troubling for them

For many clinicians, this is not a satisfying way to diagnose a disease. A European study which surveyed 1,622 physicians in eight countries as well as 800 patients with a confirmed diagnosis of fibromyalgia, revealed that doctors struggle with diagnosing fibromyalgia.

The Fibromyalgia Global Impact Survey found a 1.9 to 2.7 year lag from the time a patient initially presents to a physician with symptoms suggestive of fibromyalgia to the time a diagnosis of fibromyalgia is firmly established. Also, between two and four physicians may be needed to reach an accurate diagnosis.   Factors in the delay included:3

  • 16% to 71% of doctors said they were "not very" or "not at all" confident about their ability to identify fibromyalgia or differentiate symptoms of fibromyalgia from other disorders.
  • Lack of physician education
  • Patients tend to wait anywhere from five months to two years after symptom onset to see a physician.

To make matters worse, treatment has been elusive.

Until very recently, there was little in the way of definitive treatment for fibromyalgia other than treating symptoms. However, several medications have been introduced in the last several years that are approved for use in the treatment of fibromyalgia. These approvals have not only provided relief for fibromyalgia sufferers but have also legitimized the disease as a distinct, treatable disorder.

Lyrica, an anticonvulsant, was the first medication approved by the FDA in 2007 specifically for fibromyalgia pain. Selective SNRIs (serotonin and norepinephrine reuptake inhibitors) used for treating depression, also, in some cases, help relieve fibromyalgia pain, whether the patient is depressed or not. Currently, Cymbalta (approved in 2008) and now Savella (approved in 2009) are the only antidepressants approved by the FDA to treat fibromyalgia pain.

But there is even more good news. Fibromyalgia is now recognized as a distinct disease entity. Why?

Fibromyalgia patients experience pain differently. Although fibromyalgia research has been a long time coming, according to the latest findings, the pain of fibromyalgia isn’t occurring because of direct damage or inflammation. It’s the result of differences in the way the brain and spinal cord process and transmit pain.4

The University of Michigan has made the most research strides by using functional Magnetic Resonance Imaging (fMRI) to look at the way the brain processes pain and pressure stimuli in fibromyalgia sufferers versus people without the diagnosis or those with a diagnosis of a similarly presenting disorder such as arthritis. They discovered that the sensory neurons of people with fibromyalgia react in a much more “excited” or intense way to pain or pressure stimuli, meaning that there is some problem with the way these sensations are processed in the brain, leading to a much higher pain response.

This clear, functional difference in the way the brain processes information is the first major scientific proof that fibromyalgia represents a truly distinct disorder. It also suggests that targeting treatments on the way the receptors function may be the key in treating fibromyalgia.

A person is about eight times more likely to develop fibromyalgia if one of their relatives has it, according to Daniel Clauw, M.D., director of the University of Michigan Chronic Pain and Fatigue Research Center. He goes on to say that there are also certain environmental triggers.  For example, people develop fibromyalgia after motor vehicle accidents, or after certain types of infections or biological stress. Although the disease is more common in women, there are no real demographic factors that can predict its development.

Other research shows changes in the peripheral nervous system, changes in the ways muscles respond and in levels of enzymes throughout the body. Muhammad B. Yunnus, MD, a pioneer FM researcher, believes that there is a large group of illnesses with overlapping features that he calls "Central Sensitivity Syndromes." What they all have in common is a sensitization of the central nervous system. Under this broad CSS category, he lists disorders such as FM, CFS, migraines, irritable bowel syndrome, TMJ, multiple chemical sensitivities, restless legs syndrome, myofascial pain syndrome, and others. All of these illnesses have some symptoms that overlap.5

However, physician education often lags behind research and the lack of a definitive diagnostic methodology doesn’t help. But, there is hope.

To deal with this issue The American College of Rheumatology (ACR) has proposed a new set of diagnostic criteria for fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain.

The tender point test is being replaced with a widespread pain index and a symptom severity scale. In the past, a fibromyalgia diagnosis was generally based on the presence of tender or trigger points but that test did not take into consideration pain movement, gender differences and the array of additional symptoms that fibromyalgia sufferers may experience.

The new pain index score is determined by counting the number of areas on the body where the patient has felt pain in the last week. The symptom severity score is determined by rating on a scale of zero to three, the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. Plus points for additional symptoms such as numbness, dizziness, nausea, irritable bowel syndrome or depression. This new diagnostic key will give clinicians real support in making the diagnosis.6

So, if you think you have fibromyalgia… 

Dr. Clauw of the University of Michigan says to seek treatment early because there’s some evidence that early treatment is most beneficial. It’s reasonable to start with your primary care physician though the diagnosis is often ultimately made by a specialist, either a rheumatologist or a neurologist.

You can improve your chances of an accurate, speedy diagnosis by documenting your symptoms very carefully and arming yourself with information about the possibilities so that you can have informed conversations with your doctor. Both the National Fibromyalgia Research Association and the Fibromyalgia Research Network are two good sources.7,8

Most physicians are very aware that their patients are doing independent research on the Internet and generally view an informed patient as a better partner, though they may legitimately worry about the accuracy of some of the Internet information people are reading.

If your doctor does not appreciate your efforts to educate yourself, you may want to think about whether or not he or she is the right partner in your care. On the other hand, you will need to be patient as the diagnostic process unwinds. As you can see, there are many disorders with similar symptoms and a thorough physician will want to be certain that he or she has reached the right diagnosis and that can take some time, testing and observation. And, of course, as with almost every disorder, you can help yourself by eating a healthy diet, exercising, getting enough rest and following your doctor’s advice about medications and any other treatments or restrictions.  

The Bottom Line

Fibromyalgia has come a long way from being an “it’s all in your head” disorder ascribed to hypochondriacal women to being a disease with a better defined biochemical mechanism, better diagnostic methodology and several recently approved drugs that are being successfully used.

Despite being troubling for both you and your doctors, there is hope on the horizon for all those with FM. Don’t give up.

Published October 24, 2010, updated June 20, 2012

 

Photo By:  Mikael Häggström


References

  1. Fibromyalgia: The Misunderstood Disease, Science Daily June 2, 2007
  2. Mann D, 7 Conditions Linked to Fibromyalgia, Health.com
  3. Stein J, Fibromyalgia Stumps Doctors, Medical News Today, June 24, 2008
  4. Pain In Fibromyalgia Is Linked to Changes in Brain Molecule, Science Daily Mar. 13, 2008
  5. Yunnus M, Are Fibromyalgia and Other Chronic Conditions Related? ProHealth, June 8, 2000
  6. The New Criteria Proposed For Diagnosing Fibromyalgia Suggests No Longer Focusing On Tender Points, Medical News Today 26 May 2010
  7. National Fibromyalgia Research Association
  8. The Fibromyalgia Research Network

 

Susan M. Brissette brings 30 years of experience in healthcare, ranging from positions as Chief Executive Officer and Chief Operating Officer in the acute care hospital setting to Senior Executive for a major national healthcare management company. Ms. Brissette holds a BS in Biology from Northeastern University and an MS in Health Policy & Management from the Harvard School of Public Health. She has lectured on healthcare management at the University of Massachusetts, developed a healthcare delivery system for a mining company in Cajamarca, Peru, and recently led the Afghanistan Public Health Redevelopment Task Force for the Washington Harvard Alumni Group. She has consulted on healthcare projects in Poland, Romania, Israel, Kuwait, Peru, Canada, and Mexico. She now owns and operates SB Cass Associates, a healthcare consulting firm located in upstate New York. Ms. Brissette’s consulting practice handles client projects ranging from business plan development for clinics, assisted living facilities, and clinical research groups to the development of market research reports for the pharmaceutical and biotechnology industries. She has written dozens of healthcare articles published on the internet and in national professional and consumer journals. She has also authored or edited online courses on HIPAA compliance, corporate security, childhood obesity, and business ethics.

Susan Brissette can be reached at SB Cass Associates [email protected]

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