CFS-101
Chronic fatigue syndrome is a mess. It messes up the lives of the people who have it and those who depend on them. Internationally, there is a mess of disagreement among researchers and the medical profession regarding what constitutes CFS, what causes it, and how to treat it. It is such a protean entity that the confusion is understandable. The reason I use the abbreviation, “ME/CFIDS” (myalgic encephalopathy / chronic fatigue immunodysfunction syndrome) to refer to my own case is not because that’s how my health care provider labels it. She calls it fibromyalgia, but that’s not inclusive enough for me. If fibromyalgia (as defined by the CDC) exists as a discrete entity, that’s not what I have or, certainly, not ALL I have. On the bulletin boards and newsgroups I’ve joined, we get around the nomenclature problem by calling it the DD, the “damned disease.” That label fits as well as any.
The labeling issue is a big one to many people. For some of us, CFS being tagged “yuppie flu” in the 1980s seemed demeaning, and it does trivialize the illness. International professional medical associations outside the U.S. have scrapped the nineteenth-century labels, “fibromyalgia” and “neurasthenia,” in favor of a name that covers both the pain and the dysfunction. Patients’ groups have been trying to come up with a new name for the DD, but I see little chance of its being accepted outside our groups. Sarah, my provider, a physician’s assistant at our community clinic (no doctors in practice out here) uses the terminology that’s accepted by U.S. government programs and insurance companies. The newer, more inclusive, terminology that has been adopted by several international symposia is not good enough for them. The CDC’s case definition is not good enough for me. My country lags far behind the rest of the English-speaking world, and I’m convinced that the power-elites of the AMA and insurance industry are responsible for that. I don’t need to know exactly who profits from this absurdity, or how, to understand that the motive is profit… money, power and prestige, all tied together. We’ll go on doing it our own old way, rather than accept that anyone else could have a better way.
Just as the official case definition is skewed and deficient, many of the treatments that are accepted and respected by most doctors here do more harm than good. Many internists treat only the one most prevalent presenting symptom: pain, ignoring fatigue and sensorimotor dysfunction altogether. Relatively few people have found their way out of their addictions to painkillers as I have. Another common treatment is referred to in newsgroups and online forums as “Prozac and a walk in the park.” A few years ago the appearance of a prominent physician on the Today Show was heralded in the forums with anticipation because our disease gets so little attention. Afterward, many of us were sick with disappointment when all he talked about was himself and his “revolutionary” treatment: antidepressants and light exercise. Far too many doctors treat the secondary depression, which develops from being disabled and disbelieved, as if it were the disease itself.
Exercise can harm us. Research has demonstrated this. If it has come up in U.S.-based research, it hasn’t been publicized. Since most research in this nation is financed by pharmaceutical companies, it may not even have been studied here. Most of what I have learned about this damned disease comes from Australia. By reading Australian Research Abstracts on Moira Smith’s Canberra FM/CFS page, I’ve learned, among other things, that our muscles don’t atrophy from disuse because our neurons keep firing even at rest; that our conditions are worsened by exercise (something every person with CFS has found out for herself through experience); and that we have higher concentrations of chlorofluorocarbons in our tissues than normal people. That last bit is intriguing. It would tend to help explain the U.S. outbreak in the ‘eighties. What we need now is research on the hows and whys of that and what it means for us.
The rest of my input here will be interspersed as comments to the following article by a physician who has treated many cases of CFS.
Dr Kathleen Maros’s article was published in the Australian Dr in October, 1988.
A severe case will present as a fragile figure, looking immediately for a place to lie down. Other less severe cases will walk slowly as though very old. Others again will manage to arrive, looking relatively fit, but will tend to wilt as the interview proceeds and will often admit that getting to the surgery has been a major undertaking. Either they are feeling too weak and ill to summon enough energy to come, or they do not trust their senses, e.g. eyesight and concentration to allow them to drive the car. “Doctor, This is simply not me!”. The core symptom of the Chronic Fatigue Syndrome is of course, fatigue. The tiredness, however, in this condition has special characteristics. Firstly, it is devastating in its ability to immobilise the patient.
In my twenties, I often worked two jobs at a time: emptying bedpans and bathing patients in a hospital or doing factory work during the day, and working in bars and restaurants evenings and weekends. On some of my jobs I danced á go go, usually a series of forty-five-minute sets in between getting down off the stage to wait tables, for eight-hour shifts. Almost every one of those jobs I lost when I became unable to show up for work. I loved some of those jobs, and needed every one of them, I believed at the time. My last job ended in 1976. I gave up my job search eventually after dozens of interviewers said my references, interviews and test results were excellent, but my spotty work record made me too great a risk. I gradually adjusted to a survival mode and subsistence lifestyle.
Secondly, it comes and goes in an unpredictable manner during the course of the day and certainly in the course of the week.
I never know in advance how I’ll feel or function at any given time. For that reason, I hesitate to make commitments and appointments unless I absolutely must. I believed when I committed myself to driving the rehab van one evening out of every two weeks that I would be able to conserve energy between times and manage, but in reality many times I find myself resorting to herbal stimulants (ephedra, gotu kola, green tea) so that I can function adequately to fulfill that commitment. I use them sparingly because in excess they are dangerous, and only when necessary because they have side-effects at any dosage.
Thirdly, it is intriguingly exacerbated by physical effort and, to a certain extent, mental and emotional effort. Sometimes the exhaustion following exercise is delayed up to 24 hours. This changing pattern leaves the patient with a bewildered sensation of being either `dead or half dead’. The patients have an arrayof comments relating to this fatigue and is always important to ask them just how they would describe their tiredness. “I wake in the mornings feeling hung-over.” “I feel is if I have just run a marathon.” “I sometimes feel that, if I am not careful, someone will pour me down the drain and leave behind a pile of clothes.” “I feel as though someone has put in a syringe and sucked out all my blood.” “I look into my energy stores and there is simply nothing there”. ” I feel is if I am running on standard instead of super, and I am pinging.” These people look out through the window and longingly view the growing weeds, but have learned, by painful experience, that to go out and mow them is to court disaster in terms of further depletion of energy. Excessive activity on one day may be followed by extreme exhaustion 24 hours later.
That is the usual pattern for me. On good days, when I don’t need stimulants to simply get showered and drive to town, I make it through my active day without collapse. I get home okay, unload my groceries, and if I’m wide-awake enough when that’s done, I blog about the trip, because I’ve grown accustomed to the next-day crash and know that I may not be able to blog again for two or three days if I don’t do it while I’m up.
Yawning and a kind of air-hunger occur. The patients have enough insight that they refuse to accept the age old accusation that they are `hyperventilating’. “How can I be hyperventilating when I awake from my sleep at 3 am with tight band around my chest and the feeling that I have to consciously take over the control of my breathing or it will stop altogether?” I see no reason to doubt these people. After all, it is accepted that babies can `forget to breathe’.
This symptom first reached debilitating magnitude for me at about age twenty, forty years ago. That was when I started using asthma medications. I no longer take pain meds or anti-depressants, but I’m still dependent on asthma meds. The story of how I ended up in the psych unit of an Air Force hospital in Japan because of my breathing problems is linked in my memoirs in the sidebar. Many people, including my dentist and some of the doctors whose work I’ve read, believe that asthma, allergies, and the entire complex of auto-immune diseases such as lupus are related to ME/CFIDS. When I smoked marijuana, sometimes I actually would forget to breathe for long enough periods that my lips and nail beds would turn blue and I’d begin to shiver from anoxia. The shivers would clue me to breathe, but it was the effects of the addictive eating that resulted from the “munchies” that finally clued me to stop smoking.
During the interview, it is almost invariable that a complaint of poor memory and concentration occurs. Being unable to find appropriate words, or being unable to spell very simple words, being unable to remember the name of a dear friend and losing track of conversation mid-sentence all occur. I have heard the following two comments many times. “This must be what Alzheimers disease is like.” And “If this is what I am like at 20, I’ll never make sixty.
On fibromyalgia forums, this is called “fibro-fog”. I still have my lucid moments, but I’ve been unable to concentrate long enough at a time during the past year to complete the task I set myself, to learn XHTML and CSS, and build a website for Addicts Unlimited. Progress is slow at the best of times and none the rest of the time. When I’m so bad I can barely hold up a book and turn pages, and end up reading the same paragraph repeatedly, I resort to the PS2. I have to keep telling myself when I screw that up, “It’s only a game.”
A more specific symptom is that the limbs are inordinately heavy at times. A women has to take frequent breaks when she hangs out the washing. A man cannot use a screwdriver on some days. One patient told me that she had stopped wearing any jewellery because it was simply “too heavy”.
I recall telling my doctors when I was in sixth grade that my head was too heavy, my neck too weak to hold it up. Just last week I had another of many subsequent recurrences of that. Often, my arms are too heavy to brush my hair. Once, thirty years or so ago, I rashly got it cut very short because I couldn’t keep it groomed. That was disastrous because I’ve got cowlicks all over my head that make my hair stand up in tufts when it’s short, and then as it grows out it must either be mowed repeatedly or it gets in my eyes and mouth. I let it grow, and now when I can’t groom it I put a bandana on over the tangles. Thank God, bedhead has become socially acceptable!
Grieving over this loss of energy is a depressive aspect of the condition. My observation is that the patient with a depressive illness, on the other hand, looks inwards and does not notice the weeds in the first place. This is an important difference between the two. Reactive depression often follows when the illness has been present for months or years. Other `psychiatric’ aspects to the illness do occur, such as extreme mood swings with occasional outbursts of anger and frustration. The intermittency of the tiredness and the mood swings gradually reduce self-confidence, and make any reasonable or reliable social arrangements impossible. Sleep disturbance, which is sometimes major, is the rule.
Oh, yes, to all of that. I’ve been diagnosed as bipolar type II, hypomanic, but I don’t think I’ve ever really been manic at all. My symptoms don’t conform to classic depression because it’s intermittent, but when I’m not depressed I’m not manic, I’m just nearer to normal.
This has been a week… or a month, of greater than average sleep disturbance. One of the good things about aging is that I’ve learned to tell when it’s futile to try getting back to sleep after I awaken, so I no longer lie abed and fret and call it insomnia. Now I get up and do things and call it extra time to live. Last night I got to sleep at about 3:30 AM, after reading myself to sleep as usual. I woke twice in the first three-and-a-half hours and got back to sleep. Then around 7:30 a loud noise woke me with a start and an adrenaline rush that made further sleep unlikely. I got up. I wasn’t good for much. I cuddled the dog, talked to my son, and then after he went to bed I amused myself at the PS2 until Greyfox called for his morning weather report. I got on the computer to get his weather, and when that was done and I’d had breakfast and caffeine, I felt strong enough to blog.
Muscle pains are extremely common. They are severe and described as burning, aching, etc. And one patient even described the sensation as though thousands of tiny bubbles were bursting under her skin. While mainly across the neck and shoulders and in the lumbar region, they occur all over and are resistant to analgesics. Sharper neuralgic types of pains also occur in attacks. These may occur anywhere but, if on the left side of the chest or left arm, often result in a rushed trip to the hospital in a ambulance. The oxygen supplied during the trip is often described as either “quite helpful” or even “wonderful”. Headaches may be the presenting symptom but are secondary to the tiredness, on direct questioning. Nearly every patient, at some stage, will rub his neck or her hands across the back of the neck and shoulders and talk about their frequent need to visit the chiropractor or masseur to obtain some relief.
I have posted here the details of the PainSwitch technique I use to turn my “pain” into neutral sensations that then give me clues about what to do to ease the situation. I need, sometime, to go back and find it and put a link in the sidebar, I think. The same irresponsible internist who precipitated my worst-ever exacerbation of the disease in the 1970s with four prescriptions for four different symptoms, and put me in seizure, also prescribed nitroglycerine for my heart. A cardiologist later said my EKG showed no sign of the heart attacks I’d been convinced I’d had.
Costochondralgia in the connective tissue between the ribs is often mistaken for pleurisy. And then there’s the dreaded vulvodynia, like a kick in the crotch. Any part of the body can hurt, at any time. Using a body part is almost a sure way to make it start hurting. Talking or eating hurts the jaw, walking hurts the legs, feet and crotch, changing heel height or standing too long hurts the lower back, and my hands have always hurt because I’ve always had this compulsion to use the damned things.
Intolerance to light sometimes occurs but more often the patient describes sores eyes, and this does not appear to be the usual soreness associated with conjunctivitis, but rather a straining of the whole globe within its socket. Blurred vision is more of a perceptual problem and is not solved by changing glasses. Nor can it be objectively measured by the optometrist. As do all the other symptoms it fluctuates.
There seem to be two types of dizziness described. The first seems to be associated with nausea. The second is more a state of being put out of kilter with the surroundings, and a sensation of swaying or lurching.
Intolerance to sound can be so extreme that the patient wears ear-plugs but usually it is simply the complaint that they are in a constant state of disagreement with the other members of the family as to how loud to have the TV or the need to shut themselves away from the children, etc. This hyperacusis appears to be the most distressing to the patients themselves. On the other hand, family members often accuse the patient of being deaf, and their response is that they cannot concentrate enough to absorb incoming conversations.
Such perceptual anomalies and the motor dysfunctions, the “sensorimotor deficits,” are the most perplexing of all the symptoms to me, far worse than any pain. This week my eyes have been playing tricks on me. I had become convinced that I needed new glasses, but then my vision cleared up… and then went all blurry again. The hyperacusis to sound can feel as if there is something in my ear, beating on the drum. It’s a physical sensation and when it first started, about twenty years ago, it almost made me nuts. My doctor was clueless and incredulous, but I described it to a friend who said, “Oh yeah, I get that, too. If you find out what it is, let me know.”
Patients are usually very cold, especially in their hands and feet, but they usually complain of excessive sweating, even at times when they are otherwise freezing. There are few who complain of flushing.
Examination of the fingernails will show that many of these patients have poor quality nails which are brittle. I have seen two patients with this syndrome who had intriguing problems with their nails. One had ugly, pitting psoriasis of the nails until he got Chronic Fatigue Syndrome and they cleared up when he became ill. Another had the most profound weakness at times in his right hand which he used most, and he found he was always cutting those nails and never needed to those on his left hand!
Palpitations occur and the cardiologist invariably comes up with normal findings. the patients then go for a stress test for angina and sometimes have to be helped down from the equipment because they have depleted their energy stores to such a extent.
Appetites become disturbed, varying between anorexia and excessive interest in food. The later the most common and the patient say that they ” have to keep up their energy levels”. Irritable bowels occur, with the usual confusion between constipation and diarrhoea, along with nausea and bloating. Sometimes the patients exhibit weight loss or weight gain.
My parents’ weight fluctuated a lot, and mine did before I educated myself about blood sugar and brain chemistry and made a conscious choice to regulate my eating habits by reason and not by impulse. There are times I feel I’m starving to death because I’m weak and my blood sugar is low. I drink water and eat one or two pecans or a small serving of something, and sit down and wait until it’s time to eat more. The sitting down is an important part of the plan. When I’m tired and weak, I have to listen to my body. It’s just saying it’s tired and weak. I used to interpret that as hunger. Now I recognize it as fatigue.
Thyroid function tests are often done and found to be normal but, along with many other tests e.g ESR, there are often strange discrepancies in the tests which fluctuate from one examination to the next. Sensitivities to chemicals in food, drugs and environmental products are the rule in Chronic Fatigue Syndrome . Sometimes the patient will be upset by a smell which other people are slow to detect.
I was still a preteen when I became labeled a “false positive reactor.” With my history, I hesitate to take medical tests, and I recognize the better doctors as those who hesitate to give them after seeing my history. The memoir segment I mentioned before, in the airbase psych ward, includes the story of my allergy patch tests. Some had to be done a second time because I had so many positive reactions the swellings all ran together so that it couldn’t be distinguished which ones were positive. After that experience, I just started telling people, “I’m allergic to everything.” I’ve seriously considered the possibility that I’m alien to this planet. Smells, sounds, sights… even the “point” of jokes, sometimes, I “get” before anyone else. I feel earthquakes no one, or nearly no one, else detects. A few years ago, I discovered that a new neighbor had been feeling the series of small tremors that my family thought I’d been imagining.
Swollen cervical glands and sinus stuffiness occur every few weeks and sometimes amounts to little more than a mystery, but obvious bacterial infections occur in some cases. Other parts of the body as well show evidence of congestion e.g. the breasts or the forearms. Many cases of Chronic Fatigue Syndrome have marked rings under their eyes, almost as though they have been painted on.
If Dr. StAmand’s guaifenesin protocol does nothing else for my “fibro” (and I can’t say for sure what other effects it might be having), it at least eliminates the nasal congestion and sinus infections from their inability to drain. That’s a big thing. Even in elementary school I had raccoon eyes, but that’s gotten a lot better since I started eating rationally and paying attention to my kidney function. Listening to my body has relieved or eliminated many of the problems that used to be severe.
While it is possible to be forgiven for considering the first severe case to be historic, and the second one to be a puzzle, when many cases have been seen, they all appear to be speaking the same language, and the syndrome is no longer nebulous. One thing is certain , these peoples lives are wrecked for the length of time during which they remain ill, and the idea of suicide is often entertained as a way out. “Mind you, doctor, I wouldn’t do it, but how much can one take?”
On the fibro forums I’ve seen numerous exchanges where some newbie will mention a “crazy new” symptom she has, and then will be pathetically relieved and thankful when someone tells her it’s “only the fibro.” Then someone will say, “at least this disease won’t kill us,” and someone else will respond, “it just makes us wish we were dead.” I’ve lived through that, and attempted suicide after experiencing some of the many losses and disappointments that proceeded directly or indirectly from the disease or from the addictions to painkillers and antidepressants, etc. I’m beyond that now, with the intellectual and spiritual tools I need to cope. On the positive side, after all this the thought of torture holds no threat or fear for me. What my own body does to me on a regular basis, anyone else would be hard-pressed to equal.
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