Life with CFS

In a way I am taking a step away from my normal genealogy blog to discuss something else. But it isn't totally unrelated to my family tree. It is the subject of Chronic Fatigue Syndrome, and it is related to my family tree in that I have an uncle that also has CFS, and an aunt that has fibromyalgia and at least one cousin that also has fibromyalgia.

Dear Friends and Family,

I realize that everyone has their challenges and limitations. I believe it is through knowledge of those challenges and limitations comes understanding. In that spirit I would like to share with you a little bit about Chronic Fatigue Syndrome (CFS).

Like most “invisible” diseases (meaning those that aren’t always obvious on the outside), CFS is a poorly understood illness. To make it worse there is much misinformation about this illness has been circulated over the years. After suffering from this chronic debilitating illness for almost 19 years, I have recently started my own campaign to try and help people understand exactly what this illness is and how many suffer from it.

The name Chronic Fatigue Syndrome is a deceptively simple name for a horrible illness, after all who doesn’t get tired sometimes. It hasn’t helped that the medical profession downplayed how serious it can be and it got labeled "Yuppie Flu" in the media, or that some think it is just all in the person’s head.

Let me start off by saying what it is not. It is not laziness, it is not depression, nor is it some form of mental illness. It is also not some made up fad illness. The Centers for Disease Control studies show that “CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.”

Chronic Fatigue Syndrome is also recognized by the World Health Organization, American Medical Association, National Institute of Health and many other medical and health organizations as a very real and very serious illness.

Yes there is fatigue, but it isn’t the normal tired you get if you aren’t getting enough sleep or after putting in a hard day’s work. It is an all encompassing, bone deep fatigue that is there even after a full night’s sleep. And trying to push through the fatigue is a major mistake because it causes post-exertional malaise, which is another major indicator of CFS.

Post-exertional malaise in CFS is defined as "exacerbation of symptoms following physical or mental exertion, with symptoms typically increasing 12-48 hours after activity and lasting for days or even weeks."

Some of the symptoms required to be diagnosed with Chronic Fatigue Syndrome include:
• Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.
Plus four or more of the following symptoms are present for six months or more:
• Impaired memory or concentration
• Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
• Unrefreshing sleep
• Muscle pain
• Multi joint pain without swelling or redness
• Headaches of a new type or severity
• Sore throat that's frequent or recurring
• Tender cervical or axillary lymph nodes

This list was taken directly off the Center for Disease Control’s website.

The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including:
• irritable bowel
• depression or psychological problems (irritability, mood swings, anxiety, panic attacks) These problems are a result of CFS not a cause of CFS.
• chills and night sweats
• visual disturbances (blurring, sensitivity to light, eye pain)
• allergies or sensitivities to foods, odors, chemicals, medications, or noise
• brain fog (feeling like you're in a mental fog)
• difficulty maintaining upright position, dizziness, balance problems or fainting
• Low grade fevers
• and many other problems

The CDC says “of the four million Americans who have CFS, less than 20% have been diagnosed.” This is due to many factors including:
• There's no diagnostic laboratory test or biomarker for CFS. Researching are working hard trying to discover one, but for now there is no test.
• Fatigue and other symptoms of CFS are common to many illnesses. This is why the doctor also must run numerous tests to rule out any other possible cause of the symptoms.
• CFS is an invisible illness and many patients don't look sick.
• The illness has a pattern of remission and relapse. And for most of us that suffer from the illness that is one of the most frustrating parts, never knowing when something you tolerated one day might land you in bed the next time you do it.
• Symptoms vary from person to person in type, number and severity.

At one point Multiple Sclerosis was considered to just be Female Hysteria until doctors and researchers found the physical markers that allowed them to identify the illness. One day researchers will find the physical marker for CFS, but since that day isn’t here we just have to understand that medical science has limitations and there are things that we don’t understand yet including CFS.

I hope that you have found this information helpful. I am more than willing to share exactly how this illness has impacted my life. If you want to know more feel free to ask me when you see me out and about. However know that if I am “hibernating” in my apartment it probably means I am in one of the relapse portions of the illness and am probably not up for much company.

Linda