The single best thing the chronic fatigue specialist said was, “We’ve been puzzling over your case for a while.” I said, “Well, at least that makes more than one of us.”
Somehow, it meant more than anything else he could have said ~ except, perhaps, “we have a cure” or “we found a previously-overlooked treatable tumor.” He only spent about 20 minutes with us, but he did seem to have prior knowledge of my case ~ details I had told the PA six months ago. That was reassuring. Maybe he actually was back in his office, reading my file thoroughly, pacing back and forth, stroking his beard, massaging the bridge of his nose, calling his colleagues, looking up case histories in large, dusty medical tomes… Ok, doubtful, but I’m grateful he took a cursory glance at my paperwork before coming in the room.
When the main doc finally joined us, he said…very slowly… “your symptoms are confusing” …pause… “they’re so varied” …pause… “but” …pause… “we still consider this chronic fatigue syndrome.” About five minutes later he said, “the reason you’re confusing” …pause… “is because you tested positive for…” For what? FOR WHAT!? “…plasmodium.” Oh. Yeah. But that was a false positive. Right? He didn’t seem to quite buy the false positive for whatever reason, which now has me thinking about malaria again. He didn’t want to pursue it, but he just was so slow and thoughtful about this malaria conundrum that it made me think he knew more about how those tests work than I do and that the positive results shouldn’t just be swept under the rug. Regardless, I have no symptoms of active infection, so he thought we should move forward with CFS symptom management.
The main doc, to his credit, didn’t dumb anything down and emphasized repeatedly that the medical community does not fully understand the mechanisms behind what happens in chronic fatigue syndrome, but that it is a central nervous system disorder. He said the etiology of CFS, fibromyalgia and chronic pain is the same, so the treatments are similar. He used to work with Jon Kabat-Zinn, which excited me since I’ve read Kabat-Zinn’s book, listened to his meditations and podcasts etc., and my therapy has been based on his mindfulness models.
Unfortunately, I didn’t get a chance to ask any of my questions: Should I see a rheumatologist? Cardiologist? Neurologist? Should I be tested for heavy metal toxicity? Hormone levels? Serum electrolytes? Coxsackie? XMRV? They didn’t want to retest any of my year-old blood tests without any new and/or severe symptoms.
Ultimately, my marching orders were to start Cymbalta at 20mg, see the clinic’s psychotherapist and read The Pain Survival Guide (written by Dennis Turk, a colleague of theirs, incidentally). Also, both doctors were emphatic that exercise was the best medicine (although, they called it “activation” to try to trick us into thinking it was more technical and less threatening). My husband piped up about our fears when it comes to graded exercise. I said, “I try to keep active, but if someone is going to ask me to lift a weight… forget about it.” Momentarily, I wanted to scream: Get into my body for one week and then tell me to exercise or waste energy seeing your psychotherapist or come back to useless appointment after useless appointment! But, it was only momentary. They’re trying. They’re treating us. They’re our only hope.
As we were leaving, I said, “Call me if you need a guinea pig.” The main doctor said, “You’d be amazed how many people say they’d like to be part of research studies.” “Not really. When you don’t want to live like this, there’s not much to lose. We need all the help we can get.” This coming from the lady who has unopened bottles of SIX different prescriptions that might supposedly help me. I’ll participate in a research study as long as you don’t touch me or give me any drugs.
Daily gratitude: for all the doctors and researchers trying to find the answers to ME/CFS/FM. Thank you.