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For Fibromyalgia Sufferers, Real Caring for A Phantom Disease

April 11, 2014

Fibromyalgia is considered a diagnosable, real condition that affects many middle-aged people and the elderly. However, that was not always the case. Up until the late 1980s, the majority of doctors and researchers were still skeptical about it.

However in 1990, in light of new clinical evidence, the American College of Rheumatology finally issued diagnostic criteria for fibromyalgia. The Centers for Disease Control and Prevention and the World Health Organization soon formally recognized it. The move effectively acknowledged fibromyalgia as a disease worthy of medical attention rather than dismissed as the imaginary whining of middle-aged women and the elderly population.

They complain of a constellation of symptoms, including:

  • Chronic pain that can be described as aching, burning or dull pain that is widespread all over the body or limited to certain "tender points" such as the: neck, back, shoulders, elbows, shins, or knees.
  • Weakness or fatigue
  • Stiffness
  • Sleep problems
  • Difficulty concentrating
  • Anxiety
  • Depression
  • Migraine headaches
  • Digestive problems

These symptoms can be triggered or exacerbated by trauma, surgery, physical activity, weather changes and emotional stress. The exact cause is yet unclear, but how the brain processes pain signals may be exaggerated in fibromyalgia. Because symptoms often overlap with many other conditions, fibromyalgia is still often overlooked and misdiagnosed (as rheumatoid arthritis or osteoarthritis for instance).

Fibromyalgia sufferers are often misunderstood and can have strained relationships with their spouses and families. Because of the vague nature of symptoms coupled with a nondiagnosis by doctors, they are labelled as complainers with poor coping mechanisms or who crave attention. On the other hand, patients complain that their loved ones simply do not understand what they are going through. Aside from dealing with real pain, frustration sets in, and the person is left helpless.

Older people with fibromyalgia are even more vulnerable to neglect, inappropriate treatment or misdiagnosis. The reason is because they have co-morbid conditions which have similar symptoms as fibromyalgia. Elderly patients with fibromyalgia are more likely to experience extreme fatigue and soft tissue swelling compared to their younger counterparts. Their risk for falls already high, fatigue from fibromyalgia can raise it further.

How is fibromyalgia treated?

An important first step is to get a proper diagnosis from a qualified physician, who will find out if the patient have had 3 months of pain in no less than 11 tender points in the body before making a clinical diagnosis. They may order some tests to exclude an underlying medical condition that could explain the symptoms.  Since there is no definitive test, diagnosis can be tricky. Professional organizations can point you to rheumatologists and other resources to get a definitive answer.

Every case is different, so an individualized physical therapy program, exercise, massage, relaxation techniques and behavioural therapy are usually initiated. If symptoms worsen, medications serve as a powerful adjunct to therapy and can generate substantial relief of symptoms. Pregabalin (Lyrica), duloxetine (Cymbalta) and milnacipran (Savella) are some of the drugs which have been approved by the Food and Drug Administration for fibromyalgia. Doctors may use other drugs off-label for some patients.

After fibromyalgia is diagnosed, family members tend to empathize stronger with the patient. It helps that they now know what they are dealing with and eases some of the frustration. Empathy is a powerful basis for a caring relationship, and people with fibromyalgia need it just like any person with another disease.

There are many ways to help someone with fibromyalgia. A loved one, family friend or a patient care assistant (PCA) can assist them in:

  • Taking medications
  • Going to consultations
  • Reducing stress
  • Engaging in regular physical activity
  • Getting enough sleep
  • Avoiding caffeine
  • Eating a healthy diet
  • Using assistive devices to lessen fatigue and risk for falls
  • Doing enjoyable activities like hobbies
  • Keeping a diary to record activities and symptoms
  • Considering acupuncture, yoga or massage
  • Connecting to a support group
  • Educating themselves
  • Keeping tabs on the latest research

For those with severe fibromyalgia including older people who need help in day-to-day functioning, home care services present an excellent solution.

It is important that the individual becomes an active participant in dealing with their symptoms. Fibromyalgia can be a lifelong condition that is demanding to the person and the whole family. Symptoms may not resolve completely, but with understanding, self-education, proper medical care and effective coping mechanisms, they can still lead full and happy lives.

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