When you are sick, but no one understands…living with CFS

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“Painful Descent”, an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.

Today’s subject is inspired both by my personal experiences with health issues and the experiences of others I know or have known that suffer from Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). Although I myself have not been formally diagnosed with CFS, my doctor has ruled out many other autoimmune conditions and it is looking more and more likely that CFS may be the culprit. Of course, this post is one that many others who have an “invisible illness” will be able to identify with. Please remember that just because someone doesn’t look ill on the surface, doesn’t mean they aren’t suffering or fighting a tough battle.

So, what do you think of when you hear the words Chronic Fatigue Syndrome? Do you call it the ”Yuppie Flu” like so many others have in the past? Do you think these people are lazy, faking it for attention or all hypochondriacs? I hope not, but if you do, maybe some facts might change your mind. For instance, did you know that fatigue is actually just one of many symptoms of CFS? In fact, you have to have multiple symptoms to even qualify for a CFS diagnosis. Here is a list of some of the symptoms of CFS that afflict most sufferers to one extent or another:

Incapacitating fatigue for no apparent reason
Extreme fatigue after exercise or exertion
Sleep problems
Pain in joints
Muscle aches and muscle weakness
Chronic infections that are hard to cure
Sore throat and ear pain
Severe headaches
Constantly swollen lymph nodes
Nausea and IBS symptoms
Constant flu-like symptoms
Mental fogginess
Chest pain
Numbness
New or worsening allergies
Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
Irregular heartbeat
Hypotension, possibly fainting
Dizziness
Depression and anxiety

And those are just SOME of the symptoms! I personally have experienced all of the above symptoms, some worse than others, but I am still one of the lucky ones with CFS. I can still get out of bed without fainting and I can still walk and do some normal activities on good days. Some people with CFS can’t climb a flight of stairs to the second floor of their home and some sufferers almost never leave their bed or home (especially those who have severe hypotension and fainting).

Also, for those who think this illness is all in the head, did you know that there have been reported outbreaks of CFS in communities where hundreds of people came down with it all at once and suffered severely from it for at least 5 to 10 years? This research leads scientists to believe that at least some cases of CFS are actually caused by a virus that really messes up the immune system for some reason. Although some CFS sufferers do eventually feel better, only a small percentage will fully improve and never have symptoms again. There is also no tried and true treatment so far. Treatment options currently used include antidepressants, stimulants, exercise, nutrition plans and various other alternative approaches. Although some of these treatments do help some people, there are still many CFS sufferers who have found nothing that helps them. Perhaps that is why the suicide rate for those with CFS is high compared with many other physical ailments.

So, after reading all that, has your view of CFS and those who suffer from it changed at all?