There are many people, especially doctors, who claim that fibromyalgia is just a symptom of depression. I’ve had both, and I know the difference quite well. They are very, very different.

Being in pain all the time can certainly lead to depression. That’s just logical. There are, however, people who have fibromyalgia who are not clinically depressed. Depression can also manifest as physical pain, but it is does not meet the criteria for fibromyalgia.

I was treated for depression for years before I developed FMS, though, and I truly believe that if I’d gotten proper treatment for mental health issues in my childhood (post-traumatic stress disorder and all the complications it brought, including major depressive disorder) I probably wouldn’t have developed FMS.

I never have trouble distinguishing between the two, or between either of them and CFS/ME, which I also have. They’re all quite different.

With FMS, the pain causes fatigue, and together they can (but don’t always) have an affect on your emotions. You may feel like doing something, but your body absolutely will not cooperate. There have been times when I’ve been feeling great, gone out to do something I was SO looking forward to — and nearly collapsed in the middle of everything when my body said, “All right, that’s it, no more. Done. Where’s the bed?” (We’ve joked that if I ever manage to get a scooter or electric wheelchair, it will have to have a remote control feature so that Sam can steer me on home when I’ve passed out.)

But serious clinical depression…it doesn’t matter whether you’ve got the physical energy or not. Logic doesn’t matter. Knowing that you’d feel better for having a nice, hot shower is utterly irrelevant. The fact that the telephone ringing is contributing to your headache, and you could make it stop by merely lifting up your arm up pushing a button, is irrelevant, because lifting your arm would take too much damned effort. Yes, somewhere, on some level, you may know that you’ll lose yet more function for not getting up and doing your exercises, but it’s less important than staring at the ceiling, or the pillow, or whatever is in front of your face right now. Not that you really make any kind of conscious value judgment or anything, but the staring has inertia going for it. Even if nothing IS hurting, even if you have all the energy in the world and you could do anything you just don’t care.

Remember that, the next time you hear someone claiming that FMS and depression are the same.

There’s been a lot of buzz over the past week about a study published in the Journal of Chronic Fatigue Syndrome that suggests treating fibromyalgia and ME/CFS with cortisol (a steroid), based on the fact that most patients have low cortisol levels. I do not have access to that publication, but would like to point out some concerns.

First, most of the reports are not clear about the fact that this was a literature study, rather than a controlled clinical study.

Second, while at least one story did claim that the literature study was followed up with an “observational study” in which all of the FMS/CFS/ME patients in a particular clinic were given cortisol. That does not meet the standards of a controlled, clinical study, which would require an untreated control group and a group receiving placebos instead of cortisol.

There have been multiple clinical studies of the effects of steroids on FMS/CFS/ME. I found records of studies of prednisone and hydrocortisone, in particular. Those studies did not find any positive effects from treatment compared to placebos, and in some cases there were significant problems resulting from the treatments. I did not find a study specifically involving cortisol, but I don’t know if that’s because there hasn’t been one or because I don’t have access to the appropriate databases. (I’m sure there are more studies out there, but I don’t have access to Medline.)

I’d strongly suggest waiting for the results of repeatable, controlled clinical tests of cortisol before trying steroid treatment. Steroids have serious side effects, and should not be taken lightly.

Some of the comments are pretty old by now, but there are certain themes that come back, over and over again. I’ve decided to answer them once, and that’s it.

ME and FMS are not “lifestyle” diseases. Researchers have found genetic, neurological and cardiological anomalies, so get off that blame-the-victim bullshit. We know better. We’ve done the diet and exercise dance. We’ve tried air-cleaners and removing toxins and natural cleansers and vitamins and health foods, and while some of them are nicer than the alternatives, they cannot cure chronic fatigue syndrome or fibromyalgia because they are not part of the cause.

While we’re at it, no, alien abductions don’t cause FMS, either. I know you’re laughing, but there really is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chronic Fatigue Syndrome” is a totally inadequate name for a disorder whose sufferers experience far, far, more than a little tiredness. That’s why we have a new and better name for CFS, as of January 2007: ME/CFS, or myalgic encephalopathy/chronic fatigue syndrome. The disease has been known as ME all along in the rest of the world, although sometimes the acronym was used for myalgic encephalomyelitis. Personally, I preferred one of the other suggestions, chronic neuroendocrineimmune dysfunction syndrome (CNDS), but I wasn’t on the committee.

I would happily rename fibromyalgia “you don’t want to be me” or “betrayal by entire body, taking your mind with it,” but I don’t think anybody is suggesting that it be renamed. The name just doesn’t seem adequate to its impact, though it’s a little better than some of the older names, like “rheumatism.”

To others who have said “prevention is better than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plenty of aphorisms, too. Tell me, pray, how one “prevents” disorders whose origin is unclear? As I said above, researchers have identified genetic anomalies. We have fairly good evidence that fibromyalgia, at least, has a genetic component. We’ve got brain scans showing that fibromites’ brains react differently to painful stimuli, and other tests showing that our spinal fluid has much higher levels of a neuropeptide involved in transmitting pain impulses than non-fibromites.

With that in mind, how would you go about “preventing” fibromyalgia? Advising us not to breed? Many of us have already done so by the time we’re diagnosed — and, of course, that can’t help us when we’ve already got the disease. We can use our own diagnoses as warnings that our own children may have a susceptibility to fibromyalgia, but what then? Smother them in cotton batting, to keep them from experience any stressors in life that might set off the FMS bomb in their genes?

Being fat doesn’t cause ME or FMS, either, although it’s common to gain weight after developing either disorder. I don’t know anyone who is able to maintain the level of activity he or she did before falling ill, and many of the drugs used to treat the symptoms of these disorders cause weight gain. Losing weight is even more difficult for us than for other people. Telling us that we’d feel better if we lost weight is not helpful in the least. I’ve never once heard of anyone who was “cured” of FMS or ME because he or she lost weight — and if it were happening, I would know it, because I pay a lot of attention to these things.

Even if I thought weight loss offered a “cure,” or even amelioration of symptoms, I see no reason to discuss drugs like Xenical at any length. Any drug or procedure promising weight loss will has an easy time getting approved because of our society’s hatred of fat people. Fen-phen, anyone? “Oh, the drug will kill some patients, or leave them with permanent heart damage? Hell, it’s worth it if there’s a chance of losing weight!” The weight-lossself-hatred industry has more than enough money and power to lube their way past any flimsy little regulations standing in their way.

Diet and sports and their relation to weight are another thing all together, and beyond the scope of this blog. I recommend you to peruse the worlds of the delightful Sandy Szwarc over at Junkfood Science, who does cover that topic, frequently, thoroughly, and well.