CFIDS

CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. In medicine, the term "syndrome" is used to describe a wide array of symptoms.

I only recently started saying CFIDS instead of just CFS. This is because I want to help overcome the misinformation that’s gone on (thank God I acquired this last year, instead of 10 years ago!). Lots of people still don’t believe CFIDS is real, and many who do believe don’t really understand it. (Some still think of it as the "yuppie flu".)

Sometimes even I wonder if I’m imagining it all—after all, maybe I only need to take daily naps because I’ve become accustomed to doing so. Then I remind myself I’m not imagining my fever! And that there are many days I decide to not take a nap, but 30 minutes later my brain and/or body override that decision.

One reason CFIDS is hard to diagnose (and the reason there’s been such widespread disbelief) is that there are so many symptoms, and they come and go. You can have swollen lymph glands for days/weeks. Then when you see the doctor, they’re normal. Then, soon after, they become swollen again.

I guess to try and give you an idea of what this feels like is to imagine having the flu. One that lasts for so long that you have to try and function regardless of how you feel. (Also, when most people think of fatigue, they merely think about being tired—and everyone is tired. Imagine this fatigue more as exhaustion; like a master carpenter who doesn’t have the energy to raise his arm to hammer or an athlete who doesn’t have the energy to walk to the mail box.)

And the fatigue is only one symptom—one of the minor ones at that. The worst symptoms I’ve experienced so far are the mental problems. An example of their occasional severity is that people sometimes put their wallet in the freezer! (I thankfully haven’t done this yet!) Another example is an algebra teacher or accountant who can’t do simple arithmetic. (I have had problems along these lines.)

Some symptoms:

• memory and cognition problems
  
• light headedness/dizziness
  
• forgetfulness—I’m much more forgetful that I used to be. In fact, I’m surprised when I remember things! I also have phases of extreme forgetfulness—where 3 minutes after I think of something I want to remember, I’ve forgotten. Writing notes doesn’t necessarily help, either—plus you have to remember the thing long enough to make a note about it!
  
• muscle aches/joint pain
  
• sensitivity to light
  
• sensitivity to noise—background noise often makes it very difficult to concentrate. Sometimes when I’m driving, I have to turn off the radio to figure out how to drive someplace (and I’ve lived in Portland most of my life)!
  
• low-grade fever
  
• headaches/sore throat
  
• swollen lymph glands
  
• numbness
  
• dyslexia/aphasia—I’m amazed when I can write even a simple note to myself without making an error (I rarely made these kinds of errors before).
  
• bruising
  
• acne/rashes
  
• dry mouth

Some think people who have CFIDS are really just hypochondriacs, or that having CFIDS is a trend. (I find it interesting that some of the symptoms I’ve had for months, I’ve only recently learned are common symptoms of CFIDS.) Some of these people say a lot of the symptoms are caused by lack of exercise and depression. Mental symptoms caused by depression are universal across the brain. Tests show that the mental symptoms in CFIDS patients are not universal. Many people’s verbal skills aren’t affected much, whereas visual processing is greatly affected.

One of the more frustrating (and visible) symptoms is that I can be talking and, in the middle of a sentence, forget what I’m talking about. When (if) I finally remember, I can’t remember what I was planning to say!

While there is no cure for CFIDS yet, there are several things a person can do to help alleviate the symptoms. Unfortunately, what works for one person may not work for another!

The CDC criteria for CFIDS are:

1. Clinically evaluated, unexplained, persistent, or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
   
2. Concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
   a. Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities.
   b. Sore throat.
   c. Tender cervical or axillary lymph nodes.
   d. Muscle pain.
   e. Multi-joint pain without swelling or redness.
   f. Headaches of a new type, pattern, or severity.
   g. Unrefreshing sleep.
   h. Post-exertional malaise lasting more than 24 hours.

Some books I recommend:

From Fatigued to Fantastic by Jacob Teitelbaum, MD - this book talks about different treatments for CFIDS/Fibromyalgia. If you have CFIDS/fibro and read this book, make sure your doctor reads it, too (as it says in the book).

Osler’s Web by Hillary Johnson - this is a fascinating book. I’m not done yet, but so far it talks about the early days of Chronic Fatigue Syndrome, or at least about the early days of the upsurge! (There seem to have been 1-2 cases a year for a long time--since 1934 or 1960--then in the 1970’s the incidence increased along with AIDS.)

Chronic Fatigue Syndrome - A Treatment Guide by Erica Verillo and Lauren Gellman. I haven’t read this one yet.

Running on Empty by Katrina Berne, PhD. I haven’t read this one yet, either.

Links

CFS Frequently Asked Questions
CFIDS Association of America
The Fibromyalgia Network
My CFIDS Poems
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