For those of you who don’t already know, “FAQ” is an acronym for “Frequently Asked Questions.” These are my answers, based on reading about these diseases and my own personal experience, to questions I get asked frequently.
For something more “official” or for the latest in treatments, etc., about Fibromyalgia Syndrome (FMS), please visit the Fibromyalgia Network. For the latest about Chronic Fatigue & Immune Dysfunction Syndrome, please see the the CFIDS Association of America.
No one really knows what causes Chronic Fatigue and Immunodeficiency Syndrome. Some doctors think that Epstein-Barr Virus (EBV), the mononucleosis virus, causes CFIDS. Others think that an unknown viral agent causes the disease. Still others think that CFIDS, Fibromyalgia, and MCS (Multiple Chemical Sensitivity) all have the same root cause: the increasing pollution of the earth. They see CFIDS, FMS, and MCS patients as the first wave of those who suffer due to the poisoning our environment. Others see persistent overprescription of antibiotics as the culprit and think that people with CFIDS are suffering from infections that have become immune to antibiotics, and still others think that Lyme Disease is the common agent for CFIDS, FMS, MCS, as well as MS and that our current modes of detecting it have not grown as sophisticated as that disease.
Because no one really knows what causes CFIDS, there are quite a few doctors who don’t believe that CFIDS really exists. These physicians think that many CFIDS patients need psychological or psychiatric help to cure their symptoms, or that CFIDS patients are incorrectly diagnosed with the illness and that their physicians have failed to correctly ascertain what is really making these patients ill.
Each opinion on the cause of CFIDS has some merit, in my opinion. As someone who has been ill for many years, I find
that my symptoms have worsened, and that I am not able to handle as many things in the environment as I used to be able to.
I used to smoke a cigar once a month or so. Now, I can't smoke cigars at all because my lymph nodes swell up and get
painful, plus I get nauseous and dizzy, and no cigar, even one of those illegal Cubans, is worth that. Heck, I also used
to smoke cigarettes, and I can’t even be around those without getting severe reactions now. A lot of perfumes tend to make
me sneeze now, whereas back in the day, I could be in a room full of clashing perfumes with impunity. On the other hand,
I do tend to disbelieve the CFIDS diagnosis a little bit. There are so many things that could be wrong with me that could
cause the symptoms I have. I’d be testing all of the time to figure it out. So far, we have ruled out Lupus,
Hepatitis C, Anemia, Diabetes, Hypoglycemia, and AIDS. However, I recently found out that I have Lyme Disease, and
that’s a big one right there. I could also have mercury poisoning from old fillings, obscure thyroid disorders or
nutritional deficiencies... You can see that the whole thing gets very confusing.
Wow. Basically, see above! Really, no one yet knows what causes it. One “good” thing about an Fibromyalgia
diagnosis is that it lacks the political problems of a CFIDS diagnosis (though the two often go hand in hand in many
patients). Studies have been done that actually show inflammation in the muscle tissue and joints of FMS patients that
have substantiated their complaints, so almost 100 percent of doctors believe that FMS is real.
Honestly, I really hate this question. I know you didn’t mean to be insulting, but, if you look at that question carefully for a moment, you can see how insulting it really is. Don’t worry, I forgive you.
For me, having CFIDS is like having a bad flu every day. Not the stomach flu, but the kind where you have a sore throat and your body aches and just getting up to take a whaz or to do the dishes is a monumental effort. Of course, when you have the flu, you’re tired, but that isn’t the only thing wrong with you. Well, that’s the way it is with me. Yeah, I’m tired, but that is a secondary complaint to the headaches, sore throats, muscular pain, occasional memory and cognitive problems, the shaking I get in my hands and the tics I get in my eyes, dizziness, aching lymph nodes, and chronic upper respiratory infections I have every day.
In the UK, CFIDS is called Myalgic Encephalomyelitis (ME), which probably saves UK ME patients from the imbedded
insult of this type of question. There is a movement in the US to change the name of CFIDS to something that more accurately
describes the chronic immune problems all of us CFIDS patients have. For some reason, people hear “Chronic Fatigue
and Immune Dysfunction Syndrome” and only actually hear the “fatigue” part. CFIDS is not Chronic
Fatigue. In order to be diagnosed with CFIDS, the fatigue one experiences has to be medically unexplained, of duration for
at least 6 months, not the result of exertion and not significantly relieved by rest, and must cause a drastic reduction
in one’s activity level.
Many of the treatments for FMS and for CFIDS are similar. Basically, the treatment most physicians give are SSRIs, a class of anti-depressants that help level out the patient’s Serotonin levels. Many doctors seem to feel that Serotonin plays a role in both FMS and CFIDS, but they don’t really seem to know what that role is.
Most CFIDS and FMS patients who stick with the allopathic route end up taking a laundry list of prescriptions from their doctors. Most FMS patients are prescribed painkillers in addition to anti-depressants. I personally have tried anti-depressants and they did nothing for me, so I won’t take them anymore. I have mostly gone the holistic route, partly because it seems that I, like many CFIDS patients, am extraordinarily sensitive to medications. Plus, I have taken antibiotics for many years before to try to get rid of the chronic infections I get, but they didn’t help me at all. In fact, they made me worse. And, I got tired of getting operations all of the time that didn’t help me either.
Some people claim to have been cured of CFIDS and FMS. I’ve read of a few who received treatment from doctors that
cured them of both or one of those illnesses. Mostly, though, people who say they’ve been cured take drastic, life-changing
nutritional and holistic action. I believe the last statistics I saw for CFIDS patients said that about 40 percent seem to recover, and
that the chances of recovery seem to decrease the longer the person is ill. I haven’t seen recovery rates for FMS patients.
Sure, vitamins and supplements seem to help, but the underlying cause of illness, if you really have CFIDS and/or FMS, is not cured by supplements or vitamins. I, like many CFIDS and FMS patients, take a vast coterie of vitamins and supplements, depending on what holistic thing I’m trying this time. And, much to my chagrin, I recently have started being on a very restrictive diet that seems to help me somewhat. Again, it hasn’t cured me, but I can tell that I do feel a little better when I am not eating wheat, flour, sugar, fruit, cow’s milk dairy products, potatoes, etc. (God knows what I’m forgetting that I’m not eating!) Since I like to bake and eat sugary stuff, I decided that I would go off my über diet on the weekends. So, at least once a weekend, I eat too much ice cream or something and start to really feel like hell and realize that the diet really does work to help me feel better. That has helped reinforce my willingness to do it at all.
Exercise is a tricky one. Everyone seems to agree that regular exercise is a must for both CFIDS and FMS patients. However, both FMS and CFIDS patients have “exercise intolerance.” Basically, that means the trick is to figure out how much exercise a you can do to help improve your condition without making yourself worse.
From everything I’ve read and about FMS, regular exercise can really make a difference in the degree of suffering. An FMS patient is usually asked to start a slow walk for 1-5 minutes a day for two weeks, then build up in five minute increments to ½ an hour. Most FMS patients I know personally can’t do more than ½ an hour without being flat on their backs the next day and maybe even the next 2 weeks after that, but I do know one person who walks every day for an hour and is okay with that.
With folks who have CFIDS, the exercise thing is even more tricky (at least for me). Some days, I can take a nice,
vigorous walk for 30-35 minutes and be fine. Other days, I can hardly walk 5 minutes. I try, sometimes unsuccessfully,
to gauge how I’m feeling and exercise accordingly. I must admit, though, that I am afraid to exercise because I’ve
overshot the mark many times. I do find that my muscular pain lessens a lot with regular exercise, though, so I try to
walk the line. I haven’t been able to dance, walk, or anything for longer than 35 minutes in many years, though. That,
I know from experience, is too much for me.
First, look at the CFIDS Association of America’s website and check their page about symptoms. If you have a number of these symptoms, my
advice is to start working with your GP on getting a referral to an Infectious Disease Specialist. They are usually the
doctors that diagnose CFIDS.
First, check the Fibromyalgia Network’s website and check their page about criteria for an FMS diagnosis. If you have a number of
the symptoms listed, my advice is to start working with your GP on getting a referral to an Rheumatologist. As far as I know,
only Rheumatologists are considered medically qualified by the AMA to diagnose FMS.