Immune Disorders: Definitions and Resources

This is my effort to provide an overview and signpost for people interested in such illnesses as Chronic Fatigue Syndrome, Multiple Chemical Sensitivity/Environmental Illness, and Fibromyalgia. If I don't manage to tell you anything you didn't know, you can at least try my links at the bottom.

My personal health has had a very rocky history, and has taken some odd twists and turns along the way. I know much more about my body than I did a year or two ago, and there are still some major parts of my disability I don't understand yet. When you have a disease on the "bleeding edge" of medicine, you end up doing much of the research and testing yourself -- and sharing what you've discovered is vital, since you may help other people and be helped in return.

What Are These Illnesses?

I focus on what I call "The Big Three": Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity. There are many other related illnesses, but these are the most far-reaching and the most prominent, and almost always seen in some sort of combination.

Fibromyalgia: Characterized by mysterious pain, whether localized or general, with no obvious physiological cause. Sometimes an old injury will flare up after it has been healed for years, showing normal on all tests and yet giving the person constant pain for months or years. Or else a person will come down with the flu and have the typical aches and pains -- and when the flu goes away, the aches are there to stay. There are many onset stories, and many possible causes, but all of them result in an illness that is difficult to detect and almost impossible to treat, and which drags down quality of life with incessant pain. It has a host of other symptoms, including sleep disorders, fatigue, difficulty concentrating, and irritable bowel syndrome; for a fairly comprehensive list and a description of what is needed for diagnosis, see FMNet's diagnostic criteria.

Chronic Fatigue Syndrome: Now somewhat more respectable than it was ten years ago, the so-called "Yuppie Flu" has proven itself to be a real illness with physiological effects, striking across the board with regards to race and income. Its most obvious prejudice is gender; 70 to 80 percent of CFS sufferers are women. The most common symptom is crippling fatigue, varying in degree from taking a few days to recover from activity to having to spend one's days in bed. CFS News has a wonderful FAQ, answering most of the common questions about CFS.

Multiple Chemical Sensitivity: Like CFS, it's searching for a respectable name, and thus is also referred to as Environmental Illness, Toxic-Induced Loss of Tolerance, and a host of other names. MCS is a condition in which the body cannot metabolize and eliminate toxins properly; this is different from an allergy, which is a simple immune-system response to foreign materials, though sometimes the effects are similar. The body becomes sensitized to toxins by exposure to them -- one large exposure, "normal" levels of exposure over a period of years, or anything in between. Some of the most common sensitizers are pesticides or herbicides, perfumes, formaldehyde, and mold; solvents and similar chemicals are also a problem, thus the term "darkroom disease". Once sensitized, however, the body will react to many unrelated chemicals, the patterns of sensitivity varying from person to person due to exposure history and individual physiology. Those with MCS should avoid perfume, air fresheners, scented laundry or bath products (including scented soap), dry-erase markers, strong cleaning solutions, new cars or furniture, new carpet, pesticides or herbicides, solvents, and some food additives, just for a start. Even if the person is not obviously sensitive to a particular item, the body is already damaged and can't process toxins effectively; the damage may be invisible, but it is there.

Are These Syndromes Related?

These syndromes, along with a huge number of other illnesses (Lupus, Gulf War Illness, Crohn's Disease, Reynaud's Syndrome, hypo/hyperthyroidism, adrenal gland dysfunction, systemic yeast infection, etc., etc.) are interwoven and interrelated in (evident) causes and symptoms, to the point that many of us have begun to believe that they may be aspects of a particular kind of general malfunction; a meta-syndrome, if you will, whose symptoms can be whole other diseases. Not everyone with hypothyroidism has or will have any of the others, but it is being discovered that many people with Multiple Chemical Sensitivity have brain or organ damage and subsequent dysfunction, and they are more likely to have adrenal problems, thyroid problems, immune disorders such as Lyme and rheumatoid arthritis, and so on. (The idea of a meta-syndrome is not new; one unrelated meta-syndrome coming to light is Syndrome X, linking diabetes with insulin resistance and several other problems).

I have come to agree with a friend of mine, who runs the Immune mailing list (http://www.immuneweb.org) that The Big Three all run together. They have very similar symptoms and, what's more, someone who has one is at great risk for the others. A person who suffers from Chronic Fatigue Syndrome may not react to her favorite soap right now, but as time goes on she is very likely to have problems with other people's perfume, then air fresheners in her house, then a host of other things, including her soap. There are very few fibro or CFS sufferers I have met who have no problems at all with fragrances, which are the most common MCS trigger. Most MCS sufferers also have CFS to a certain extent, and many have fibromyalgia symptoms.

What Options Are There?

There is no known cure for any of these illnesses. When I say that, I don't mean it's impossible to get well, but rather that there is no one thing that will get rid of the problem for even most people, and that (barring a few miracle stories) these problems never truly go away. One can get the body healthy enough that day-to-day living is virtually symptom-free, but when something triggers the syndrome, it shows up again. In the case of MCS, this is not necessarily an unnatural reaction; the sensitivity is to synthetic chemicals, many of which are actually toxic. While most people's bodies deal with these toxins silently, they are still not good for humans, and once the body starts to take notice of toxins in its environment, it will never relax its vigilance again. Perfumes alone contain many chemicals which have been shown to be harmful to humans (see The Health Risks from Perfume), and when the awakened system encounters these toxins, it will enter a state of alarm. We call ourselves the Canaries in the Coal Mine, since, just like the birds that miners carried, we react to the poisons in the environment that others can't see.

Though there is no cure, there are many treatments. No one treatment helps everyone, and not every treatment will help an individual. My own success story was getting chiropractic care; I am also having success with acupuncture and Chinese herbs. Other treatments that have been mentioned have been food allergy identification and avoidance, detoxification, special diets, NAET, massage, chi gong or yoga, EMF management, biofeedback, supplementation, oxygen treatment protocols, elimination of systemic yeast (Candida), and other alternatives. Antidepressants and other pharmaceuticals are often prescribed for fibromyalgia and CFS, and although some people have great success with them, anyone with MCS is unlikely to react well to them. Combined with the fact that fibro and CFS sufferers are prone to chemical sensitivity, prescription drugs are seldom the answer.

Few mainstream doctors are receptive to these syndromes, often telling sufferers "it's all in your head". Many people go from doctor to doctor for years, looking for answers. Medical research is available, but often inconclusive or contradictory, many times looking for the "one cause" of each syndrome. People with these illnesses usually have to do their own research and compare notes with others, using limited financial and physical resources to learn as much as they can.

There are places online and in the real world to assist in learning general facts, but there is great individual variation in what applies to each person. The body is a complex machine, and when the wrench is applied, whatever it may be, the machine will break in any of a million different ways, depending on everything from genetics to what you eat. Many of these million ways result in similar effects, but which ways your body took will affect how you go about fixing it.

The solution? Find a sympathetic doctor who knows something about your syndrome(s), then go out and learn all you can. Take charge of your health care. Be involved. Try anything that looks like it might help, and won't hurt your health much if it doesn't. And, above all, avoid what triggers you, be it exercise, or a food, or synthetic chemicals.

Where Can I Learn More?

Immuneweb (http://www.immuneweb.org) has an extensive list of articles, plus resources, a marketplace, and the Immune mailing list. I have been on Immune for several years, and though I am much less active there than I once was, it has given me an immense amount of information and support.

Co-Cure, for Chronic Fatigue and fibromyalgia. It has an informational mailing list (no discussion), and many resources; it's been around a long time.

Fibromyalgia Network, one of the more comprehensive fibro/CFS sites I've found. Also check out Living with FMS (I particularly like their Letter to Normals).

CINDA (The Chronic Immune and Neurological Diseases Association). Lots of news and links, covering a lot of the interwoven syndromes.

Lastly, Yahoo's pages for Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivity. They update their links a lot more often than I do (obviously), and I recommend looking there to find out about any disease you want to look into.