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.

ButYouDontLookSick has a marvelous article up today: ButYouDontLookSick.com : Pregnancy & Fibromyalgia: Lessons Learned and Other Random Thoughts.

I’m in the “0.08% chance of that happening” group, like the author. I was sick all the time throughout my one successful pregnancy. Yes, all day, every day, from about a week after conception ‘til months after the delivery, because it took that long before all the hormones settled back down. My tummy hasn’t been the same since — I get sick to my stomach far more easily now than I ever did pre-pregnancy.

I also felt seriously misled, as I’d heard about this “morning sickness” thing, but all the time sickness? Nobody talks about that!

That was in 1990, and I wasn’t diagnosed with FMS until 1993. I doubt my trouble had as much to do with fibromyalgia as to the fact that I’ve had hormonal problems (PCOS, particularly) since hitting puberty. My body just doesn’t like high hormone levels.

Anyway, head on over to ButYouDontLookSick and comment. They’ll be happy

I’ve had these two stories bookmarked to post here for a bit, so it seems past time for me to actually do it.

The best new pain cures, with a focus on women

Many women have a tough time finding the right kind of relief for their pain — and for good reason: Until recently, experts hadn’t actually studied women’s pain specifically, and most research wasn’t conducted with a woman’s hormones and physique in mind. All that’s changing, though.

Docs now know that to banish our aches, they must develop treatments formulated for women’s bodies. What’s more, researchers are also looking for — and finding — ways to head pain off at the pass, so those of us with chronic troubles such as migraine, fibromyalgia, or backache don’t have to be hobbled by pain on a daily basis. Here, how the new research will help you live an (almost) pain-free life. Health.com: Smart ways to banish pain

It’s definitely good news that they’re doing the research, at least! There’s good information here on how estrogen and other hormones affect the central nervous system. The article specifically mentions treatment for migraines and other headaches, fibromyalgia, and chronic fatigue syndrome.

There’s a definite anti-painkiller bias in the article, unfortunately. The author doesn’t seem to grasp the fact that ibuprofen isn’t enough “preventive medicine” for some of us, but if you can look past that it’s a decent article.

Low-energy bulbs ‘cause migraine’

I’ve had concerns about this issue myself. Fluorescent bulbs have always been a problem for me, and the “low-energy” bulbs that are so popular now are fluorescent. The flickering of fluorescent bulbs can also trigger seizures in epileptics. While manufacturers claim that the new bulbs don’t flicker, they still cause problems for some people. Eye strain from the low-intensity light is cited, but some of us do perceive flickering.

The U.K. plans to ban the sale of conventional (incandescent) bulbs within the next four years. Patients’ associations are asking that the older bulbs remain available for those who have issues with the newer ones.

This article didn’t happen to mention another problem with the disposal of the bulbs: they contain mercury. You can’t just toss them in the trash, and if one breaks you have an environmental hazard. That cost is seldom mentioned when people talk about how much can be saved by switching to those bulbs. When I looked for legal ways to dispose of the bulbs here in Atlanta¹, all of the results involved paying $1 or more per bulb. How many people are going to do that? Not many, which means that the bulbs will go into landfills, releasing the mercury.

In looking for a citation regarding the disposal problems, I came across another article that states that the fluorescent bulbs also cause skin healing problems for those who are photosensitive due to lupus, eczema, or other conditions.

I think we’ll keep buying the full-spectrum incandescent bulbs for now.

Curehunter is an interesting addition to our online toolbox. It’s a visual medical dictionary. Here’s part of what it gives me when I look up fibromyalgia:

I haven’t given up on this blog, either. Or even the long-missing podcast! I don’t know why I haven’t posted in so long, honestly. I’ve been in a very quiet time, but it’s time to leave the shell.

I have had more health problems, and I’m on more medications now. I’ve added a wheelchair to the walker and cane, and need an electric chair or scooter.

At the same time, I’ve constantly read things and thought, “I should post that to Fibrant Living.”

So I am, now. I hope some of you are still reading!