Fibromyalgia is a syndrome, not a disease. This means it has a set of common signs and symptoms but that as yet there is no lab test that can provide an objective third party diagnosis. This is one reason why diagnosis can take such a long time: many of these signs and symptoms are also common to several other conditions, and sufferers often undergo a series of tests that come back negative before the question of fibromyalgia is raised.
It is important to test for other possible reasons for symptoms, because fibromyalgia is not exclusive: it is possible to have fibromyalgia and also any number of other conditions which may be easier to treat. For example, many people with fibromyalgia also have thyroid dysfunction, a condition that can be greatly improved with thyroid replacement therapy.
Click here for a list of common symptoms of fibromyalgia and a link to a chart for testing fibromyalgia tender points.
Diagnosing Chronic Fatigue Syndrome
Chronic Fatigue Syndrome, or CFS, is another hard-to-diagnose disorder because many of its signs and symptoms can also be associated with all sorts of other disorders. It has much in common with fibromyalgia, multiple chemical sensitivity, some forms of allergies, mononucleosis, thyroid disorders, and a prolonged bout of the flu.
In fact, that can be the main thing bothering CFS sufferers: they feel as if they had a long, drawn out case of the flu that just doesn’t go away. They have a slow, draggy, aching feeling all over. They have sore throats and swollen lymph nodes. They have dry, scaly skin, brittle nails and hair, and are susceptible to infestations of candida albicans.
Most of all, they’re completely out of energy. They drag around all day, every day. On bad days, getting from the bed to the couch can be the extent of their energy. They feel drained, exhausted, and usually pretty desperate. Depression is common, and while depression can certainly exist without CFS, it’s rare for anyone to have CFS for any length of time without some amount of depression. This is not because of a biochemical reaction so much as because the sufferer feels so terrible and is unable to engage in normal activities -- and has no idea whether there’s light at the end of a very long, exhausting tunnel.
CFS is often associated with the Epstein Barr virus -- but not always. It was once thought that the Epstein-Barr virus was *the* cause of CFS, but this is no longer thought to be true. There is not yet any one known cause for all cases of CFS, so its diagnosis, like fibromyalgia’s, is one of elimination of other causes coupled with a grouping of symptoms. Many people, in fact, believe that CFS, fibromyalgia and multiple chemical sensitivity are the same condition, differentiated only by the varying intensity of the different symptoms.
And if you decide to treat CFS with alternative medicine, you will find that since there is no one cause of the illness, there is no one treatment that works for everyone, either. A good alternative practitioner will spend time to get to know you and treat you as an individual rather than using a "one size fits all" approach.
It may take some time to go through tests for other disorders before concluding that CFS is at the root of the problem. At the moment, lacking lab tests, CFS is a diagnosis of exclusion. If you have CFS and not fibromyalgia, for instance, you won’t have fibromyalgia tender points. Hypothyroidism is another one to check for, as the fatigue and other symptoms of hypothyroidism have a lot on common with CFS.
Remember, though, that it’s possible to have CFS in conjunction with any of these other disorders. You can have fibromyalgia, as diagnosed by a tender point test, and also CFS. And it’s not uncommon for the trio of CFS, fibromyalgia, and MCS (multiple chemical sensitivity, see below) to be diagnosed all together. When that happens, there is almost certainly a serious underlying stressor that needs attention.
The lines between CFS and fibromyalgia are especially blurry. They both make you tired, and they both make you ache all over. Some people get around the confusion by simply saying they have both, which may well be the case. In general, the aches and pains associated with fibromyalgia are its main symptom, with fatigue a close second; in CFS the fatigue is the main symptom. People with fibromyalgia can usually benefit from a moderate amount of exercise; a person with CFS may be unable to get out of bed. CFS sufferers usually feel like they have or are coming down with a cold or flu, with sore throat and swollen lymph nodes. People with fibromyalgia may or may not feel like that.
One clue has to do with the onset of the condition. Fibromyalgia may come on suddenly, but it is usually a more gradual process. When you look back, you can often identify triggers in the months prior to the onset of symptoms: a serious illness, injury or physical or emotional trauma, or several of these in a short space of time. CFS, on the other hand, sometimes starts with a bad bout of the flu and no other triggers you can identify.
If you are diagnosed and treated for another disorder and don’t get better, or don’t get better as thoroughly as you would hope, you may have CFS as well. Remember that very often, there is a physical or emotional problem or problems, environmental factors, a trauma or lifestyle factor that is causing your health problems, and can cause more than one condition to flare up at the same time. Treating CFS, like treating its sister conditions fibromyalgia and MCS, is not a quick process, nor is it one after which you can go on with life as usual. True healing usually requires major lifestyle changes, but people who make it through the tunnel say it’s worth every minute.
Diagnosing Multiple Chemical Sensitivity
Many of the symptoms are the same as the common symptoms of fibromyalgia and CFS, but the diagnosis is easier because there will be clear triggers. You walk into a room with a new carpet and you immediately feel ill. (You may not be feeling well in general, but chemical exposure will clearly make you feel much worse.) MCS develops when our bodies are at risk because of an illness, injury or trauma of some kind, and in this state we are exposed to toxic chemicals. We then develop a hypersensitivity to toxins of all kinds. The immune system is working overtime.
The history may be obvious. Maybe you were in a car accident and were in the process of healing from that when you spent a summer at a farm where fields were being sprayed with pesticides, and by fall, you were so sick you had to quit your job.
Or it may be much more subtle and harder to pinpoint. We all experience stressors of some kind, and almost all of us are exposed to toxins in some form. The onset of illness may be dramatic or it may be gradual. Generally, as time goes on, the body becomes more and more sensitive, and it takes lower levels of exposure to cause a reaction. The illness is progressive if not treated, ranging from mild reactions to some chemicals and medications in the beginning stages, to a severe, life threatening condition where the sufferer has violent allergic reactions to most environments and all but a few foods, at the other extreme.
This is why it is vitally important for people with any form of immune dysfunction to keep away from toxic chemicals: we are at risk of developing MCS whether we show symptoms yet or not. The lifestyle section has suggestions for minimizing exposure to toxins.
Symptoms of MCS include fatigue, exercise intolerance, headache, respiratory problems, anxiety, depression, digestive problems, coughing, sore throat and hoarseness, a feeling of shaking inside, racing pulse, weakness and malaise, itching, a sense of wanting to jump out of your skin, tingling extremities, allergies to a variety of foods and other substances, dizziness, and brain fog. During a flare it can be hard for the sufferer to communicate what he or she is feeling, except that there’s a general sense of being very sick.
Diagnostic criteria for MCS can be found at this site.
Unfortunately, many doctors do not believe that MCS exists, and it may take a long time for the sufferer to find one who will diagnose the condition. Even when people do find a doctor who believes in and diagnoses MCS, this is usually only of use in order to file for disability payments, because the standard "treatment" is simply to stay away from toxic chemicals, a measure most sufferers find inadequate. While this measure can control the worst flares, it usually isn’t enough to restore health.
Perhaps more than any other kind of immune dysfunction, MCS drives people away from the medical system and encourages looking into alternative methods of health care. It’s important to look for a practitioner with experience treating MCS, because by the time MCS is diagnosed the immune system is very compromised and delicate. Standard methods of treating any of the symptoms -- in people without MCS -- may make a person with the illness feel much worse. Generally speaking, it’s important not to move too fast and release too many toxins into the bloodstream at a time, because of the extreme sensitivity to toxins of any kind. Liver and colon cleanses, for instance, which some naturopaths swear by, will probably be much too harsh for a person with MCS.
Many people with MCS find allopathic (traditional Western) medicine not only unhelpful with their condition, but actually harmful. While there are certainly doctors who sympathize and do their best to help, there are a few fundamental problems involved. One is simply that the usual methods of treatment in Western medicine -- drugs and surgery, which also requires drugs -- will by definition make a chemically sensitive person worse. The chemicals from which drugs are made are usually among the first substances a person with MCS will react to.
The other reason is that, sadly, there is an organized group of influential doctors who are at the front of a slick campaign against recognition of the existence of MCS. Behind them, not surprisingly, are the chemical manufacturers who stand to lose the most by restrictions on the use of their products.
If the ad campaign were to simply deny that the chemically sensitive suffer at all it would be easier to prove them wrong, but rather than leave it at that, the image is of people who suffer, but that the "belief that the suffering is caused by chemicals" is a mental disorder.
More sadly still, some of the people most affected by MCS who look to the medical establishment for help, have found themselves in a nightmare of forced hospitalization in psychiatric wards. You can read more about this, and about the work advocates are doing for MCS sufferers, at this site about the campaign against recognition of MCS and who is behind it.
I want to stress that not all doctors think this way or would dream of treating patients this way. Many want to help, but the protocol of the kind of medicine they are trained to practice doesn’t give them many tools. Little research money has been put into studying treatment for MCS, for obvious reasons. People with fibromyalgia and/or CFS may find help from doctors who work with them to get over the hump of pain and sleeplessness, but people with MCS generally find their doctors only able to help by writing letters to apply for disability payments and perhaps by refering them to alternative practitioners, who may or may not be able to help.
More than most other conditions, then, MCS forces sufferers to become their own researchers, their own advocates, their own champions. I hope to be able to offer some information through the articles on this site, that may make the struggle a little bit easier.
