Hello dear readers. I am writing this from a Comfort Inn in Grand Rapids, Michigan. I am in bed. I have been in bed for 26 hours, except for time out in the bathtub and walking Noga the Angel Dog, which I don’t do very often because she’s trained to go on potty pads. That’s a blessing because these days I just don’t get far from a bed or chair. Sigh.
I seem to have Chronic Fatigue Syndrome. Not so long ago it was called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome. I don’t know why they (“they” meaning the committee of chimpanzees that decides our fate by means of the ICD, or International Classification of Disease, which is constantly changing according to progress in medical science and the caprice of its members) changed it, because it seems to exactly describe the phenomena we miserable sufferers experience: constant overwhelming fatigue, and a weakened immune system that results in our catching every virus that comes within 10 miles of us.
I take this whole thing very personally, because up till the year 2008 I felt just fine, almost all of the time. In fact, except for when I was depressed, I lived a very active, even athletic, life, working with dogs and horses, skiing, hiking, camping, aerobics, dancing, weight lifting, Tai Chi, Kung Fu….hardly sedentary, and this in addition to my long shifts on my feet in the ER and/or office.
Then–wham–I started pooping out on the last leg of my third floor apartment. Shoot, I’d been going up and down those three floors for over a year, so why should I suddenly crap out two-thirds of the way up? I went to my GP, who ran a bunch of tests and found me Vitamin D depleted, and with a strange kind of anemia. Since I complained of a rapid heart beat and vague chest discomfort when climbing stairs or hills, he sent me for an echocardiogram.
That showed a bit of mitral valve prolapse, which can account for all the symptoms I was having, but the cardiologist smirked at me and said that the degree of prolapse I had could not account for my symptoms, and that the only clear result of the echo was that I was “out of shape.” This made me furious, as I walked everywhere I went, did yoga, and of course climbed stairs.
So, since there didn’t seem to be much wrong with me (although in retrospect all those things I’ve mentioned, if added together, could certainly cause fatigue) I took my perennial state of exhaustion to be the “new normal” and pushed on through it. Then I started getting sore. All over. I went for Chinese acupuncture, took herbs, and prayed a lot, but if anything I just got worse.
At that time I had a thriving Medical Acupuncture practice myself, and kept right on working. Every once in a while I had to call and reschedule a patient because I just couldn’t muster the energy necessary to keep my own energy field intact while doing treatment.
Then disaster really struck.
I was the holistic doctor to an extended family, who were also close friends. I was at their home a lot. One of the grandchildren became ill with a sore throat, runny nose, fever, and general miseries. The GP did a strep test, which was negative, and since he was a very good GP, he did an actual physical exam (a dying art) and found that the child had a slightly enlarged liver; so he ordered tests for viruses that typically cause such signs.
The labs showed that the toddler had Cytomegalovirus (CMV), which many people contract as babies or young children. It is in the herpes virus family that contains chickenpox, Epstein-Barr, and other common maladies. It’s usually a benign, self-limiting illness, but like all herpes viruses, it goes dormant and hangs out in the spinal nerves, and can, uncommonly, cause a mononucleosis syndrome later in life, if the immune system takes a vacation for some reason. In people with severely compromised immune systems, it can cause serious illness with damage to various organs.
I got it. The serious kind. It affected my small intestine, and I lost 30 lb., and had to take digestive enzymes for the next four years in order to digest my food and not poop it out basically unchanged. Thank God I am over that now, and can finally eat without worrying about whether I took enough enzyme to digest whatever I am eating.
I have had five HIV tests in the last three years, because various doctors could not believe that I acquired acute CMV (proven by blood test) and didn’t have HIV, because in order to get acute CMV your immune system has to be basically nonfunctional. All of the tests came back negative.
Why did I just go off on a seeming tangent about my various symptoms and maladies? Because I want to make the connection between Chronic Fatigue and Immune Dysfunction, and argue that although the ICD monkeys dropped the “IDS” from “CFIDS,” they are clearly wrong, as most of you with CFS will agree.
Yesterday when I was collapsed in bed, yet unable to sleep, I started cruising the Medscape physician-only site and found a great article on the science of Chronic Fatigue. There was a link to another article on Fibromyalgia, and I started following the breadcrumb trail of a wonderful series of articles that demonstrated that these three syndromes are finally being taken seriously, and much research is being done.
The three syndromes, Chronic Fatigue, Fibromyalgia, and Myofascial Pain Syndrome, have much in common in that all of them involve hypersensitivity in different parts of the brain and spinal cord. There is a technical difference between the two pain syndromes, but they overlap and I don’t want to complicate things more than they already are, so let’s move on.
Although these syndromes have been recognized by medical doctors for centuries, they have most often been chalked up to neurosis and shucked off as hysterical, or a personality disorder, or imaginary, since they are mostly experienced by women.
But over the last few years, several pioneering university-based neurophysiologists have taken to looking into the possibility that people experiencing these syndromes might have abnormalities in the parts of the brain that secrete neurochemicals such as serotonin, GABA, dopamine, and others. It turns out that people with CFIDS/Fibro/Myofascial Pain have very different neurochemistry both in brain and spinal cord, in the places where pain is processed. They also secrete abnormally large amounts of Substance P, which is a direct cause of pain, and other chemical messengers that tell the brain, “I hurt.”
Functional MRI (fMRI) testing showed that the sensitivity of different parts of the brain was turned way up in people with CFIDS/FM/MFP, and each syndrome shows its own distinct abnormalities, which do overlap in the pain syndromes but not in CFIDS, which has its very own brain abnormality.
Almost everyone who suffers from one of the syndromes will have sleep disorders. The scientists studied this in the sleep lab, and found that the sleep EEG (brain wave test) was abnormal in two very specific ways, in almost all of the subjects. The abnormalities explain why our sleep is restless and un-refreshing, and also why we get our best sleep in the early morning hours.
And when the researchers looked at the demographics of the three syndromes, they discovered to their horror that the suicide rate in sufferers is TEN TIMES that of non-sufferers! That fact is, thank God, putting their feet to the flames; and they are actively looking for specific treatments. But for now, we are on our own.
So what can we do to help ourselves?
So far, the prescription is disappointing.
The recommendations are: eat a healthy diet low in sugars, so as not to feed the overgrowth of bacteria and yeast that many people have as a result of abnormal immunity; gentle exercise (yeah right, I just walked my dog about 200 yards and my legs ached for hours afterward); meditation (that does help me); muscle relaxants such as gabapentin and a whole list of others; acupuncture; DBT and CBT; psychotherapy and antidepressants to deal with the psychological impact of the syndromes and resulting depression; and pain medication if necessary.
On the subject of acupuncture, I can tell you with absolute honesty that I have cured, and I do mean cured, case after case of all three syndromes. My clients got better, went back to work and their normal lives, and didn’t come back. I know they didn’t come back for the reason that they were cured, and not because the treatment didn’t work, because I lived in the community and saw them around, and they referred patients to me.
One woman had such bad CFS and FM that she couldn’t even get out of bed to come to my office, so I made house calls for a couple of weeks until she was strong enough to drive herself to the office for treatment. She went back to work after about six months, and needed no further treatment.
Sigh. I wish I could treat myself, but the points are largely on the back. The specific points and needling techniques are not part of the Traditional Chinese Medicine toolbox, so I guess I need to find an acupuncturist who is willing to learn the special techniques for treating the syndromes.
Until then, I guess I’ll soldier on. I know I’m not alone in this battle to simply live life.