As my long-time readers will know, my two biggest health complaints are my Chronic Fatigue Syndrome and the mystery chronic pain in my right flank. I call it a mystery pain, because that’s exactly what it is. It has been an almost constant companion for the past four years, and while my doctors have been able to help me decrease the level of pain I live in daily, none of them can figure out why it’s there in the first place.
I’ve talked about it before, so I won’t go into too many details now, but it started very suddenly May 27, 2008. At first I thought I had bad food poisoning, then the pain changed from an all-encompassing stomach pain to one sharp, diamond-hard point in my right flank. I thought my appendix had burst and rushed into my doctors, but it was not that simple. Four years of tests, medications and trials later, it still lingers. Less painful, yes, by a large degree most days, which I am extremely thankful for, but it is a demon who refuses to be cast out.
My Chronic Fatigue had been going on for years before the pain started, but it got much worse after, and has continued to get worse every year. I had always seen these two problems as distinct entities; that I was battling two different dragons, if you will. Now I’m not sure.
I’ve been doing a great deal of reading about myalgic encephalomyelitis (ME) and how it relates to Chronic Fatigue Syndrome (CFS). It’s a bit complicated, but it boils down to this: everyone who has ME could be said to have CFS, but not everyone who has CFS has ME. I like to think of ME as the “official” version of CFS; the one with a name that means something (instead of just calling us by one of our symptoms), the one with more science behind it, and one that doctors outside the US are more likely to take seriously. To my knowledge, the US is the only country (except for perhaps Canada?) that calls the disease CFS; the rest of the world uses ME.
The problem is that when the US broke off from the rest of the world in the 80′s by renaming the disease CFS (which it is believed to have happened to create an insurance loophole so insurance companies wouldn’t have to pay out on ME/CFS patients… sigh, I can believe it) the Center for Disease Control started changing the criteria for what symptoms a person must have to be diagnosed with CFS. Currently, a person could, in theory, have no physical symptoms and still be diagnosed with CFS. This is extremely unhelpful in our fight to be taken seriously, to state that our illness is not simply in our heads, if the CDC gives such incredibly lax rules of who to include under the banner of CFS. It’s just a bad, messy, confusing situation.
ME, on the other hand, has a very thorough, scientific and complete internationally-agreed criteria that must be met before a person can be diagnosed with ME. It includes very specific, physical symptoms, such as muscle pain, new or worsening headaches, post-exertion malaise, intolerance of heat/cold, unrefreshing sleep (even though three’s nothing “wrong” with your sleeping)… the list goes on and on, and I see myself in nearly every symptom. I more than qualify, according to these carefully constructed rules, as having ME.
On one hand, it’s a little scary; the stories I hear about people with severe ME are perhaps worse than ones I’ve heard about people with severe CFS. But on the other hand, it feels comforting to have any label, and even though there is still no cure (let alone treatment) for ME, the medical community seems to know fractionally more about it than CFS, and take it fractionally more seriously than CFS. I will take what I can get.
But, this is what I really wanted to talk about in this post.
For the past four years, I have seen my fatigue and pain as two different issues… since it helps me to look at the world more mythically, I usually did picture them as two different dragons I was doing battle with (looking, in my mind’s eye, quite a bit like Aerin in The Hero And The Crown, smeared with kenet and Talat behind me). But guess what? One very common symptom for ME is mystery pain. Not just the headaches, joint, tendon and muscle pain I already knew about, but genuine, unknown pain with no traceable origin, which can be very severe.
I cannot prove that my flank pain is related to my ME, and in a way, I don’t know that saying the ME and the pain are related changes anything. Except that it makes me feel better about it. It gives me more hope. Instead of dragons coming at me from both sides, I am only fighting one. He may be black, as big as a mountain, and named Maur, but he is the only one.
I am hopeful that a cure for ME will be found. And when that happens, I will be able to cut the dragon’s head off and be rid of both problems. Until then, I will ride into battle each day… small battles, yes, but my enemy is strong. I will chip away his armored scales one at a time until I win.
And I will win. We all will.
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This would be a good time to remind everyone reading this about my CFS/ME fundraiser! I’m donating 50% of profits from print sales and Introspective to the CFIDS, which you can also donate to directly if you would like
And, hey! I think this is new since last time I posted here. I made a short video to help spread the word about the fundraiser. You can view it here, and please feel free to spread the word about this in any way you wish!