CFIDS/CFS/ME Flare vs Relapse

It’s difficult when you first get sick with this illness. What is it, what causes it and how to handle it. Oh, and the really big important elephant in the living room… how to hide it. Yes, it’s true.

While I believe what 12 Step Recovery programs say, “we are only as sick as our secrets,” in the case of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or as many know it by Chronic Fatigue Syndrome (CFS) in the United States, or Myalgic Encephalopathy, (ME) in the UK and Europe, allowing people to know that you have an invisible illness that is unbelievable even by your own doctors and that makes you appear lazy and crazy, is not a very good idea!

As I write this blog post, I’m in what I’ve now identified as a relapse. It differs from a flare in that a flare can last anywhere from 24 – 48 hrs to 3 – 5 days and is manageable with bed rest and what I like to call a mental health holiday. I do this by shutting out the world for the most part, and most stimuli, including, TV, music, talking, reading, the phone, and for the most part, normal daily activities like showering and even picking up the mail.

I can usually feel a flare coming on… sort of. It feels much like I overdid it and by taking a “holiday,” I can get through it and go back to my “normal” life. Flares happen many times throughout the year. For me, they’re nothing shocking or scary and I have learned to deal with them by canceling out daily life activities for a short amount of time and it’s over.

But a relapse is different.

A relapse for me, comes on similarly and usually indistinguishable from a flare but it happens about every 2 – 3 years and can last for weeks.

If I look back on the past few weeks or months before a relapse, I can see there were alot more frequent flares and they were usually more severe. Generally, a flare will consist of some Fibromyalgia pain coupled with the bone crushing fatigue, but it’s typically short lived with around the clock bed rest and a ceasing of normal daily activities.

But a relapse is different.

In order for something to relapse, it must be a repeat of a previous incident. That’s more what a relapse feels like. It’s scary. It feels like it’s never going to end. A CFIDS relapse makes me feel a little crazy in that sometimes I don’t even believe it’s happening again. Am I really in that much pain, again? That fatigued, again? That brain fogged, again? Or am I simply depressed?

It almost seems like it would be easier to accept what’s happening as a new illness. In the past, before a clear pattern of flares and relapses occurred, which takes place of years or decades, I spent lots more time looking for new diagnoses to go along with my long forgotten familiar symptoms.

These are all of the questions a “normal” person and many doctors would ask, and rightly so. But in order for the relapse to be a relapse, it repeats the first incident of the illness. Thankfully, my relapses don’t last for 9 months like the original onset did.