When is Fatigue a Disease?

Fatigue or profound tiredness is a serious problem in connective tissue disorders, fibromyalgia, and many other chronic illnesses. Dealing with chronic fatigue made me familiar with a whole community of people who deal with challenging levels of fatigue on a daily basis. Very few people would relate to the memes below, unless they suffer from chronic fatigue. I, who used to be a person who simply “had to” take a shower even at 11 pm after returning from work, certainly would not have believed that in future I would need to schedule shower days as a to-do list. Shower days, I do not do much of anything else, certainly nothing that requires me to step out. And I actually take a nap sometimes on shower days.

 

There is an illness, frequently misdiagnosed and the patients almost always misunderstood, the hallmark of which is fatigue.

What is Chronic fatigue syndrome?

Chronic fatigue syndrome (CFS) is not tiredness or feeling listless. It is certainly not something “just in your head”. To be defined as CFS, there has to be persistent debilitating fatigue which is not improved by rest and may be aggravated by physical or mental activity. It is not explained by some other disease like anemia or hypothyroidism.

CFS is considered a severe, systemic (is not limited to a part of the body) and is an acquired (not born with it) illness. The functioning and productivity of a person is significantly lowered compared to their pre-CFS period of life, resulting in a lot of personal and economic fallout.

Are there any other symptoms of CFS apart from fatigue?

Apart from incapacitating fatigue, CFS often also have a host of other symptoms, like muscle pains, joint pains, headache, memory or concentration problems, difficulty in thinking, irritability, disturbed sleep, digestive problems, sore throat and painful lymph nodes. There is no single specific cause known for CFS and there is no diagnostic test. Therefore, the diagnosis of CFS is based on exclusion, subjective clinical interpretation and patient self-report.

Often other diseases may coexist, including psychological disturbances like depression. Fibromyalgia occurs in as many as 70% of CFS patients.

Depression, avoidance of activities, maladaptive techniques in coping with the illness itself may aggravate the condition.

How common is CFS?

It is rarely diagnosed in India, but a large number of reports from the UK, USA and Canada report that as many as 20% of people seeking medical care may have it. Some studies indicate that as many as 2.5% of the adult population may have CFS [1].

According to Jason et al,

 …chronic fatigue syndrome (CFS), along with flawed epidemiologic approaches, which may have further contributed to the diagnostic skepticism and stigma that those with CFS encounter. [2]
There have been many revisions in the diagnostic criteria of CFS in the past two decades, leading to more diagnosis and better approach towards its management. The various definitions and diagnostic criteria used over the decades are reviewed in reference [3].

 

Who can get CFS?

A person of any age, from any social, economic, educational, ethnic and racial background can get it. However, young adults have it more than adolescents. Women get it more than men (2:1) and among all occupations, health care workers get it more than others [4].

How does CFS start?

People with CFS often say that they were fit and energetic before getting this condition. There is often an abrupt onset of fatigue, with a flu like illness. But even after the flu like illness subsides, the fatigue does not let up. The person with CFS finds it difficult to do things that they easily could before, without getting seriously tired. There may be other symptoms like night sweats, nausea, lack of appetite, dizziness, etc. There is serious functional impairment, one can no longer do even the routine chores of day to day life effectively, one finds it difficult to be effective at one’s job, there is serious hampering of social life and relationships as a result of the fatigue.
What causes CFS?

In short, the cause of CFS is as yet, unknown. Theories and studies suggest that there may be different causes leading to a similar outcome, that is, CFS. The various causes or associations that have been implicated are viral illnesses, neurological causes, endocrine causes, brain chemical related causes, psychological contribution, heritable factors, autoimmunity, autonomic dysfunction, physical deconditioning, etc.

Many investigators have postulated that chronic fatigue syndrome is a condition of complex and multifactorial etiology. Indeed, some elements may predispose an individual to develop chronic fatigue syndrome, others may precipitate the illness, and still others perpetuate the disorder. [4]

However, a growing body of literature suggests that abnormal biological processes are present in many patients, including subtle abnormalities of the CNS and of neuroendocrine regulation and chronic activation of the immune system. These abnormalities across many domains suggest that chronic fatigue syndrome is a heterogeneous condition of complex and multifactorial etiology. [4]

 

What is the treatment of CFS?

There is no specific single treatment strategy for CFS. Depending on the symptoms, medications and behavioral therapies are prescribed.

Cognitive behavior therapy and graded exercise programs have shown effectiveness in alleviating fatigue and reducing symptoms and disability.

Any coexisting disease must be addressed too. The focus has to include increasing the person’s functioning, reducing pain and increasing activity, reducing catastrophic thinking and improving coping skills. Treatment must be individualized according to the patient’s condition, needs, abilities and expectations.

What is the prognosis in CFS?

Different studies have shown variable results – around 17% – 64% patients may improve while 10%- 20% worsen.  Less than 10% actually recover from CFS, according to studies carried out in referral centers, the recovery statistics of primary centers may be better. Children and adolescents recover better while people with other factors like old age, long standing illness, very severe disease, psychiatric illness, etc have poor prognosis. Specific therapies directed at the underlying mechanisms of CFS may lead to better outcomes. CFS by itself is not a life threatening disease, but has serious impact on the personal, psychological and financial aspects of a person’s life and is frequently misunderstood or not taken seriously as a disease.

 

References

[1] Pawlikowska, T., et al. “Population based study of fatigue and psychological distress.” Bmj 308.6931 (1994): 763-766.

[2]Jason, Leonard A., and Judith A. Richman. “How science can stigmatize: the case of chronic fatigue syndrome.” Journal of Chronic Fatigue Syndrome 14.4 (2007): 85-103.

[3] Christley, Yvonne, Tim Duffy, and Colin R. Martin. “A review of the definitional criteria for chronic fatigue syndrome.” Journal of evaluation in clinical practice 18.1 (2012): 25-31.

[4] Afari, N., and D. Buchwald. “Chronic fatigue syndrome: a review.” The American journal of psychiatry 160.2 (2003): 221-236.

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About Hypermobility Syndrome India/Viv

I an an Indian woman with Ehlers Danlos Syndrome Hypermobility Type (EDS-HT), also known as joint hypermobility syndrome. Although I have "suffered" from this disease all my life, I was diagnosed at 38 years, 2 years after my child was born. My work mainly involves being a mom to my beautiful and compassionate child. I also write and work from home in the field of science. I aim to raise awareness about EDS-HT, chronic pain, invisible illnesses, mental illnesses and invisible disabilities through my blogs. Viv (Latin root, meaning Life/ Alive) is my blogging pseudonym and alludes to my continued endeavor to rediscover my life and its meaning.
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