Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)

Believe it or not, this too has been an illness I have experienced personally. There is no end to them! (Are you really a hypochondriac if you actually have real diseases? I personally have always loved the story of the hypochondriac who died and had his headstone inscribed "I TOLD you I was sick!")

In April of 1987 I was under stress at work and had to give a presentation to a group of people, something I had never done before. I was so nervous the night before that I hardly slept! A few days later I started to feel odd -- my throat and ears felt clogged, and I started to get a kind of sore throat that ached rather than hurt when I swallowed.

Gradually I developed severe fatigue and a host of other symptoms, including sensitivity to smells and sounds, "brain fog," and pressure behind my eyes. When I say "fatigue" I mean the kind of fatigue that makes you so tired you want to cry. I'd come home from work and collapse in bed for a couple of hours before I could do a thing.

I had read about Chronic Fatigue Syndrome in an article in a magazine called "Hippocrates," which described a mysterious outbreak of the syndrome in a town called Incline Village, in Nevada, back in 1984. So at least I knew what it could be when the symptoms arose, and did not immediately assume I was dying.

Luckily, I went to a doctor who had also heard of Chronic Fatigue Syndrome, which was just becoming known at the the time, and he tested me for the Epstein-Barr virus. The test came back as positive, meaning the virus was showing signs of reactivation. Epstein-Barr is not the cause of this syndrome, but reactivation of the virus may be a marker for something going on in the body that affects the immune system. He also ruled out other possible causes like cancer and Lyme disease.

At that time there was little to do but rest a lot and hope the symptoms subsided on their own. The doctor tried me on tricyclic antidepressants, which were supposed to help with sleep patterns, and a couple of other things. I was lucky; the symptoms gradually became more intermittent - a few bad days, then a few good days, and after about three years the good outweighed the bad and I gradually returned to normal. I was also lucky in that I never had to miss work because of the symptoms, unlike some sufferers with this disease.

The history of Chronic Fatigue Syndrome is murky, because descriptions of these symptoms go back decades; even Florence Nightingale may have been a sufferer. It has masqueraded under various names and for many years doctors suspected it was psychological; possibly the result of depression.

This is no longer the case; the Centers for Disease Control now consider CFS (now known as CFIDS - Chronic Fagigue and Immune Dysfunction Syndrome) a real disease and research is being done on it to understand the causes and possible treatments. In Europe, it is often called Myalgic Encephalitis, to take into account the joint/muscle pain and mental effects of the disorder and make it sound more like a disease than just being tired all the time.

I am happy that I am now 100% back to my usual self and that being tired or achey nowadays is usually just because of my advancing middle-aged status! But for many people the nightmare never ended and they are still ill with a disease that many people still don't believe in. That alone is part of the frustration they go through. People are always saying "Are you sure you're sick? You look fine!"

CFIDS: What is it?

Chronic Fatigue Syndrome (or Chronic Fatigue and Immune Dysfunction Syndrome, which is now its preferred name in the U.S.) is a constellation of various symptoms, the most important of which is severe fatigue.

What Are the Symptoms?

The CDC defines Chronic Fatigue and Immune Dysfunction Syndrome as a combination of the following symptoms:

Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities

The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:

-Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
-Tender cervical or axillary lymph nodes (swollen or painful lymph nodes in the neck or under arms)
-Muscle pain, multijoint pain without joint swelling or redness
-Headaches of a new type, pattern, or severity
-Unrefreshing sleep - waking up just as tired as when you went to bed
-Postexertional malaise lasting more than 24 hours (feeling crummy after exercise)

The earlier, 1988, definition also included the following:

Exclusion of other clinical conditions that may produce similar symptoms (e.g., malignancy, autoimmune disease, chronic psychiatric disease, and chronic inflammatory disease, among others), which would still be an important thing to do.

Minor criteria:
-Mild fever
-Sore throat
-Unexplained generalized muscle weakness

Since I had the muscle weakness intermittently (I remember once I discovered the muscles in my hands felt overused and weak after typing!), and definitely the "sore" throat (which was really more of an ache, and unlike any sore throat I'd ever had before), I thought it worth including these symptoms, which are definitely common in many CFIDS sufferers, even though the current definition seems to be de-emphasizing them.

How Is It Diagnosed?

CFIDS, as mentioned, masquerades as various other illnesses. So many of the tests that are ordered are actually tests for other diseases or conditions, to rule them out. Naturally a full battery of blood tests will be ordered; in addition to a full blood chemistry to rule out liver or kidney problems or anemia, you would be tested for thyroid abnormalities, diabetes, multiple sclerosis, rheumatoid arthritis, lupus, HIV, leukemia, lymphoma, Lyme disease, or anything else that could cause similar symptoms as CFIDS. The doctor should also order tests such as an EKG and/or echocardiogram to check your heart, since heart problems can cause fatigue.

Many patients show abnormal levels of hormones such as cortisol (the stress hormone). Testing is still being done to further understand the relationship between these hormone levels and CFIDS.

Fibromyalgia is a similar illness to CFIDS, but its symptoms veer more toward pain in the muscles and joints, with 18 specific "trigger points" on the body that cause pain when pressed. Fibromyalgia sufferers share many similar symptoms to CFIDS and there may be underlying commonalities between the syndromes. There are a number of organizations that are researching both illnesses since they overlap in many cases.

Depression is another factor that must be considered. Although people who are depressed often complain of fatigue and even physical symptoms that are similar to CFIDS, CFIDS often strikes people who have been perfectly happy and active before their symptoms began. However, there may naturally be a relationship between CFIDS and depression, since people who are suddenly incapacitated by fatigue and other symptoms would naturally become depressed. There may even be some overlapping causes of both, so while depression, when present, should be treated, its diagnosis should not exclude the diagnosis of CFIDS.

The Epstein-Barr test that my doctor performed was based on a popular theory back in the 1980's that the syndrome was caused by the Epstein-Barr virus, which is the virus responsible for mononucleosis, since so many patients were complaining of symptoms that were so similar to those of mono. Later research has shown that those with CFIDS show higher than normal levels of antibodies to many viruses, not just Epstein-Barr, and it is hypothesized that the symptoms are actually caused by a highly oversensitive immune system that is responding too strongly to many different stimuli, causing the flu-like symptoms that people experience, not by any one viral agent. So the Epstein-Barr test is no longer used as a diagnostic for CFIDS.

Tests to positively confirm CFIDS are still being explored. It may be useful to test for immunological dysfunction (serum immunoglobulins, or IgC subclasses), since if these show up then treatment with immunoglobulin replacement could be helpful. There is also something known as the "Tilt Table Test" which tends to be positive for CFIDS patients. In this test, patients are put on a table that is then tilted so that they are lying down and then tilted upright. In a study that was done, CFIDS patients had abnormal responses to this test, unlike the control population (http://www.nfra.net/LowBld_1.htm), indicating they have a type of low blood pressure called "neurally mediated hypotension."

In severe cases of CFIDS, patients may show true signs of immunologic malfunctioning, such as yeast infections, shingles, and other opportunistic diseases.

How is it treated?

Naturally it will be important for anyone diagnosed with CFIDS to get a lot of rest and eat very nutritious food and perhaps even take vitamin supplements to ensure their bodies are getting what they need. It is also important to avoid stress, as may CFIDS patients exhibit abnormal levels of cortisol in their bodies, and stress can make symptoms of the illness worse. In addition, although mild exercise is encouraged, CFIDS patients should not overdo it or they will feel worse the next day.

Treatment mainly depends on the symptoms. Since sleep disturbances are common, many doctors prescribe a tricyclic antidepressant to help the patient achieve a good night's sleep, which often makes a big difference in how he or she feels on a day-to-day basis. More modern drugs such as Ambien may also be helpful but should be used with care. Over-the-counter products such as Tylenol PM or Benadryl may also help with restful sleep, as well as the hormone Melatonin (available in drug and health food stores).

Pain can be treated with over-the-counter remedies such as Tylenol or Advil (or their generic equivalents). More severe pain can be treated with narcotics but this is not encouraged due to the addictive nature of these drugs. Alternative treatments such as biofeedback techniques or acupuncture can also be helpful.

On top of everything else, some CFIDS patients have Irritible Bowel Syndrome, which can cause bloating, gas, and diarrhea/constipation. Therapy for this condition includes antispasmodics, antidiarrheal and anti-anxiety medications. A high fiber diet should help too.

Problems with the body's immune system can be treated with immune regulators. such as Gamma globulin or a drug called Ampligen. Both are still undergoing testing and have shown variable results.

"Brain fog" or cognitive dysfunction is one of the other key symptoms of the illness. Having problems with memory, finding words, and reasoning are just some of the neurological effects of the disease. The anticonvulsant, gabapentin (Neurontin) sometimes helps, although the exact way it works to help these symptoms is not fully understood.

Actual infections should be treated with the appropriate medications: antifungals for yeast infections, antibiotics for bacterial infections, antiviral medicines for viral infections such as Shingles, which is a reactivation of the chicken pox virus that shows up as painful blisters.

People with CFIDS often are unusually sensitive to medications so it's best to start with low doses and increase them gradually.

Will you get it?

You may. More than one million Americans have CFIDS (based on studies conducted by the Centers for Disease Control and Prevention and DePaul University) according to the CFIDS Association of America. Of these, as many as 90% of them are not even diagnosed and are therefore not getting treatment.

CFIDS can affect people of all age, racial, ethnic, and socioeconomic groups. It does seem to be more common in women, as research has shown it to be about four times as common in women (522/100,000) as men, similar to that of many autoimmune diseases, such as multiple sclerosis and lupus. Kids and teens can also get CFIDS.

For more information, be sure to check out these links, which is where a majority of this information came from. The CFIDS Association of America also has a lot of excellent links to scientific papers and other sources of information.

http://www.cfids.org/default.asp

http://findarticles.com/p/articles/mi_m3225/is_n3_v45/ai_12026536

http://www.cdc.gov/cfs/cfsdefinition.htm

Worry About the Right Diseases

CNN had a good article today about the odds of people getting some of the more obscure diseases such as Mad Cow Disease, compared to more common ones like heart disease and osteoporosis.

Now, let's face it, as a hypochondriac, you probably spend a lot more time worrying about things like Mad Cow Disease than about osteoporosis. I admit it: I still worry about sausages I ate in Great Britain during the 1980's and wonder if eventually the Mad Cow prions are going to come home to roost! And I make a point of buying grass-fed beef at Whole Foods because I don't trust the USDA to inspect our meat properly.

But, as an overweight middle-aged woman with high blood pressure, I am much more likely to suffer from heart disease and diabetes in the future rather than Mad Cow Disease. But do I exercise? No. Do I lose the 25 lbs. I should lose? No. The two most useful things I could do to protect my health, I don't do. But do I go to the doctor any time I get a weird symptom that I'm afraid is some much less likely disease? Absolutely. Do I order new dietetic supplements that purport to prevent various diseases that I probably won't get anyway? Of course. It's so easy to take a pill.

The CNN article was a good wake-up call to remind us that we should focus on the proven things that we know can protect our health - exercising, achieving a healthy weight, and eating more fruits and vegetables - while of course still being vigilant about checking out new symptoms (did that mole really get bigger? Why am I so tired?) and getting our mammograms and colonoscopies regularly.

The challenge is that exercising, losing weight, and eating more fruits and vegetables require planning and effort, and the benefits are not seen immediately. Preventing these diseases requires a long-term commitment and change in lifestyle. But if your goal in being a hypochondriac is to have a longer and healthier life, these are the things you should be doing to achieve the goal!

Please see the link below for the full CNN article.
http://www.cnn.com/2007/HEALTH/06/14/healthmag.diseases/index.html

Stroke is often undertreated

Hello friends,
I've been so busy recently that I haven't yet written my next major disease post, which will be on Chronic Fatigue Syndrome, or, as it is often known, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Stay tuned...

In the meantime I was reading the New York Times today and there was a long article about strokes, and how so many patients are not treated with the drug, tPA, which could prevent much of the permanent damage that sadly often results from an ischemic (blockage type) stroke. First, strokes caused by bleeding must be ruled out before giving the drug, but many hospitals are not staffed or equipped to do this in a timely manner. Therefore the drug is often not given early enough or at all, to those who might have benefited from it.

Please see this link for the full article: http://www.nytimes.com/2007/05/28/health/28stroke.html?_r=1&hp&oref=slogin

Signs of a stroke include:

-Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
-Sudden confusion, trouble speaking or understanding
-Sudden trouble seeing in one or both eyes
-Sudden trouble walking, dizziness, loss of balance or coordination
-Sudden, severe headache with no known cause body

More information can be found here: http://www.americanheart.org/presenter.jhtml?identifier=4742

High blood pressure leads the list of risk factors for stroke. Other co-factors include a history of "transient ischemic attacks" (which cause temporary symptoms of stroke), high cholesterol, diabetes, cigarette smoking, artery disease (particularly the carotid artery, which is in the neck), heart disease or failure in general, atrial fibrillation (improper heart rhythm of the upper pumping chamber of the heart), sickle cell anemia, poor diet, obesity and inactivity. Alcohol and drug use are often associated with strokes as well. Most of these are under your control so you can take steps to prevent a stroke.

One of the points the article makes is to recognize the symptoms of a stroke and be sure to get treatment as quickly as possible. If there is a hospital that is accredited as a Primary Stroke Center, by all means try to go there, as they will have the equipment and expertise to treat you.

This handy website allows you to search within your area for the locations of Primary Stroke Centers. In addition, you can search for other specialties such as acute myocardial infarction (heart attack) and pneumonia, among others: http://www.jointcommission.org/certificationPrograms/disease-specificCare/DSCOrgs/

I was interested to learn that the two hospitals that are considered Primary Stroke Centers in my region were both fairly close, and yet not the hospitals I might have initially tried to go to in the case of an emergency. This is good information to know for future reference!

One thing that struck me was that the woman profiled in the NY Times article, who did have a stroke, but luckily was treated properly for it, had blood pressure of 200 over 120 for five years and yet decided not to go on medication because she was "too young" (53) and figured she'd worry about it later. There are so many medications out there now that can treat high blood pressure, no one should delay in getting treatment for it. The earlier it is treated the less long-term damage it can do and the less the likelihood of it causing a stroke. Please see my previous post about high blood pressure for more information.

Medical site for up-to-date medical articles

I just discovered MDLinx, a website that provides scientific articles on many different diseases and conditions.

If you are a serious hypochondriac, as I am, I'm sure you will have sufficient medical understanding to find this site very useful. You can search on various types of illness and read either the abstract of the study or the full report, depending on the level of your interest. Sometimes the full report will require a subscription to a medical journal, but even knowing a study exists may be of use, since you can refer your doctor to the study if you think it might help them with your condition.

As a serious hypochondriac, I feel you, the patient, must be well-versed in your illness, or in the possible causes of your symptoms, before even going to the doctor. Doctors are so busy nowadays that many do not listen to their patients' symptoms carefully enough, and if you have one of those doctors, you want to be sure they test you for whatever you think you might have, because otherwise they might miss something!

I am very fortunate in that I have found doctors who are willing to listen to me, and will actually address my concerns, by either explaining why something isn't necessary, or else agreeing that the concern is valid. But many people are not so lucky, and if you may be dealing with something serious or life-threatening, you don't want to take a chance with your health.

Naturally there are some doctors that will not take kindly to your suggestions or questions. But I feel a good doctor would agree that "An educated consumer is their best customer" as the Syms ad goes.