Did anyone else see this at PostSecret today?

I was made aware of it by a post to fibromyalgia.¹ Reactions there are fairly negative, because so many of us have had bad experiences with people who think we’re malingering.

I have mixed feelings, though. I don’t exactly share the sentiments expressed in the piece, but I do think it’s good art. I can relate to feeling like pain has been my entire life. It’s familiar. I can’t remember anything else, honestly.

I don’t think I’m “scared to feel better,” though, because I really resent the pain, the fatigue, and especially the brain fog. I’ve tried every treatment to which I’ve been able to get access, without much relief. Pain management is all that helps in any way now.

I have, however, gotten very anxious about trying many things. Too many falls, followed by increased pain and disability, have made me incredibly cautious. Unfortunately, I know that leads to more loss of muscle mass and endurance. I’m working on getting past it. Knowing is half the battle, right?

Talk to me. What do you think about the artwork?

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.

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.

My goodness. I think somebody over at Home on the Strange might have encountered one of those people who makes life so hard for those of us who really have invisible disabilities! Go on over and read the comic. I don’t want to spoil the surprise!

I responded to a post in a friend’s LiveJournal, in which she talked about a friend of hers who has just been diagnosed with chronic fatigue syndrome. Her friend was very upset that my friend didn’t believe there is a cure for fibromyalgia or CFS (at least, there isn’t one right now). This is part of my response.

I think that the fact that there’s finally acknowledgment from the CDC and the like that CFS is real, and research proving that FMS is real and showing a genetic link, is very promising. That greatly increasing the probability of research being done that might find a cure, or at least decent treatments.

But no, I don’t really look for a “cure” for either disease. I think the best we’re going to see for some time is better treatments for the symptoms. I’m fairly certain that both diseases will be found to be genetic weaknesses triggered by environmental conditions that damage the nervous and/or immune systems. Gene therapy may be able to repair some of that damage. Maybe. Germline therapy might offer our descendants the possibility of not passing the genetic weaknesses on to their children.

But - not expecting a cure doesn’t mean that I don’t pay attention to the research and the latest information available about treatments.

I think hoping for a cure, in some ways, can be a way of trying to shift responsibility for how we proceed to the medical establishment. If there isn’t one coming, the only improvement we’re going to experience is what we manage with what’s available now. The improvements we make in how we eat, move, sleep, interact, etc. are up to us, and they can make a huge difference. We can get some relief from currently available medications by working with our doctors. We can use various techniques to improve our cognitive functioning or prop ourselves up despite fibro fog. And if we aren’t sitting around waiting for somebody else to hand us a cure, we’re more likely to do those things.