CFS - A Devastating Illness

by Dr. Kathleen Maros

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, has often been described as Yuppie Flu and there are many doctors who doubt its existence. But for Dr. Kathleen Maros, an Adelaide GP, the syndrome is real and can be devastating. Dr. Maros has treated more than 300 cases of Chronic Fatigue Syndrome and was the GP who initiated research into abnormal red blood cell morphology in Myalgic Encephalomyelitis (The Lancet,8 August 1987). In this article she describes Chronic Fatigue Syndrome and how it affects patients.

Trying to describe Myalgic Encephalomyelitis (now known as Chronic Fatigue Syndrome) is like trying to describe a rainbow. Once you have seen it, it is easy, but its fading edges make it difficult to point out to others. Nevertheless, it is a real syndrome, devastating in its affects on the sufferer, disturbing to those who have to live with it, and a challenge to the physician. I believe that, in perceiving the reality of this syndrome, we are developing a new clinical acumen which will lead us forward into new and exciting fields of medicine.

Viral infections and extreme stress provide a background to this syndrome which almost invariably occurs in very active people. 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

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 immobilize the patient. Secondly, it comes and goes in a unpredictable manner during the course of the day and certainly in the course of the week. 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'.

Patient's Comments

The patients have an array of comments relating to this fatigue and it 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.

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 a 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 breath'.

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 Alzheimer's disease is like." And, "If this is what I am like at 20, I'll never make sixty."

Other Symptoms

A more specific symptom is that the limbs are inordinately heavy at times. A woman 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 jewelry because it was simply "too heavy".

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 intermittence of the tiredness and the mood swings gradually reduce self-confidence, and make any reasonable or reliable social arrangements difficult. Sleep disturbance, which is sometimes major, is the rule.

Muscle pains are extremely common. They are severe and described as burning, aching, etc. And one patient even described them as though thousands of tiny bubbles were bursting under her skin. While mainly across the neck and shoulders and in the lumber 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 an 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.

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 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.

Patients 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 an extent.

Appetites become disturbed, varying between anorexia and excessive interest in food. The latter the most common and the patient says that they "have to keep up their energy levels."

Irritable bowels occur, with the usual confusion between constipation and diarrhea, along with nausea and bloating. Sometimes the patients exhibit weight loss or weight gain.

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.

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.

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?"

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