Years ago as a trainee in virology at the London School of Hygiene and Tropical medicine we were asked to write up a research project on Chronic fatigue syndrome /Fibromyalgia/ myalgic encephalomyelitis, the basic premise being that this disease may be an aftermath of a viral infection and therefore look for ‘the virus’ causing it using the latest techniques available. We searched and debated a long list of viruses that may be the possible cause but did not find a single creditable study that could link it to a particular virus. So calling it ‘post-viral fatigue syndrome’ amongst its myriad names was not technically correct. Calling it “myalgic encephalomyelitis” (ME) would not be strictly correct too, because there is no evidence of an inflammatory condition of the central nervous system. Name or diagnostic labels matter since an inaccurate description of an implied yet absent pathology can be as disabling as much as a label of a syndrome for which effective treatments exist can be enabling. The search also led me to understand previously unknown disorder called by yet another set of names : Fibromyalgia or now ‘Yuppie flu’. However, much to my dismay 30 years down the line there are still no answers.
You must be wondering why am I writing about something that nobody seems to be agreeable on even its name? Let alone that, many in the medical fraternity even doubt that this even exists as a disease entity. But ask the poor sufferers who have had this illness almost destroying their lives. Many of those with CFS are often labeled as malingerers (faking illness), depressed, or at least partially psychosomatic (it’s all in the mind!). But for the scientists and clinicians in the field, the phenomenon is as real as diabetes or atherosclerosis. It is straightforward to sort out those with depressive illness from those with CFS, as implied in the advice to simply ask a patient, “What would you be doing if you weren’t ill?” Depressed patients typically won’t have an answer, whereas ME/CFS patients will often respond with a long list of dreams deferred.” The ground reality for most doctors and patients is less simple, and doctors may need all of his or her skills and time to decide which diagnosis is most likely, because depressive illness is a commonly missed or are an add-on feature of this entity.
So what happens to these patients? Have you not come across women complaining of aches and pain all over the body with specific tender points” throughout their bodies. They may point to tender points on the neck, shoulders, back, hips, arms, and legs that hurt when pressure is put on them. In addition to pain, they could also have: Cognitive and memory problems (sometimes called “fibro fog”), trouble sleeping, morning stiffness, headaches, Irritable bowel syndrome like stomach upset features, painful menstrual periods, numbness or tingling of hands and feet, restless legs syndrome, temperature sensitivity, sensitivity to loud noises or bright lights. The list of symptoms is endless and yet all tests come back negative for any definite pathology and these poor sufferers knock on many doors in search of a cure. Now I see many women nodding their heads to many of these listed complaints. Not surprising since 80-90% of sufferers are women.
The causes of fibromyalgia are not known despite many attempts to find an autoimmune, infectious or genetic etiology. Researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to having a family history of fibromyalgia, being exposed to stressful or traumatic events, such as ◦car accidents, injuries to the body caused by performing the same action over and over again (called “repetitive” injuries), infections or illnesses especially viral flu like infections, even being sent to war.
So how does a doctor make a diagnosis? Usually based upon two criteria: first a history of widespread pain (in both the right and left sides of the body as well as above and below the waist) lasting more than 3 months and second, the presence of tender points. The body has 18 sites that are possible tender points. For fibromyalgia diagnosis a person must have 11 or more tender points. For a point to be “tender,” the patient must feel pain when pressure is put on the site. People who have fibromyalgia may feel pain at other sites, too, but those 18 sites on the body are used for diagnosis.
It is important that prior to making this diagnosis of ‘Yuppie flu’ other causes of such symptoms must be ruled out by extensive lab tests especially rheumatoid arthritis, lupus, multiple sclerosis, or sleep apnea. This may sound odd but fibromyalgia can mimic or even overlap many other conditions.
And now to add insult to injury is the more severe form called ‘chronic fatigue syndrome’ where the main symptom of is extreme tiredness and it often begins after having flu-like symptoms. But people with CFS do not have the tender points that people with fibromyalgia have. To be labeled CFS, a person must have extreme fatigue for at least 6 months that cannot be explained by medical tests and at least 4 or more of the following symptoms: ◦Forgetting things or having a hard time focusing, feeling tired even after sleeping, muscle pain or aches, pain or aches in joints without swelling or redness, feeling discomfort or “out-of-sorts” for more than 24 hours after being active, headaches of a new type, pattern, or strength, tender lymph nodes in the neck or under the arm and sore throat. Now this is most confusing for most women to differentiate whether they have CFS or fibromyalgia? Now, the Institute of Medicine recently recommended renaming these as “systemic exertion intolerance disease (SEID) as if we didn’t have enough confusing names.
All said and done, any or all of these fancy sounding names can be hard to treat. It’s important to find a physician who has treated others with fibromyalgia-CFS. Treatment often requires a team approach that may include a doctor, a physical therapist, and possibly other health care providers who are ready to provide Pain management. Three medicines have been approved by the U.S. FDA to treat fibromyalgia. These are pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella) but only available strictly on prescription. Sometimes simple non-narcotic pain relievers, low-dose antidepressants, or other classes of medications that might help. The other important aspect is giving help to sleep. Getting the right amount of sleep at night is crucial. Simple measures like keeping regular sleep habits, to get bed at the same time and getting up at the same time every day — even on weekends and vacations, avoiding caffeine and alcohol in the late afternoon and evening, timing your exercise since regular daytime exercise can improve nighttime sleep. But avoid exercising within 3 hours of bedtime, which can keep you awake. Avoiding daytime naps and reserving your bed for sleeping only and avoid TV or laptop or worse smart phones! Having a winding down routine before bed always help.
What also helps is psychological support, not easy to live with this airy-fairy diagnosis that many physicians still negate. Living with a chronic condition can be hard on any afflicted woman. A support group or sessions with a trained counselor are valuable. Many swear by complementary therapies like homeopathy, yoga, relaxation exercises, breathing techniques, massages, water therapy, exercises, acupressure, applying heat or cold, acupuncture, aromatherapy, biofeedback, herbs, nutritional supplements, osteopathic or chiropractic manipulations. The list is long and by no means I have listed everything.
So, is CFS an area of therapeutic nihilism that awaits scientific breakthroughs before we can help patients? Or are treatments available that can help today? Only two :Cognitive-behavioral therapy (CBT) and graded exercise therapy (GET) show the best evidence of efficacy in medicine. Basically both work by behavior modification and not by giving medication.
At the end of the day, it’s really a matter of finding what works for you as an individual. The important thing is to not lose a “sense of purpose” in life. So if you are one of those that wake up after a night of unrefreshing sleep and keep feeling tired all the time with these inexplicable aches and pains all the time , my simplest advice is to get up and move. We may be struggling as physicians to get the name of this disease right or wrong but it’s a real Illness that is cured by a strong will to exercise.