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, 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 could have sworn that cortisol is associated with the negative symptoms of on-going stress.
That makes two of us. I know it has something to do with PCOS, too. I’m wary of steroids, in general – I’ve been told to NEVER let anyone inject me with cortisone again – so I’m definitely not rushing to try this.
Having a ‘working diagnosis’ of ‘probably fibromyalgia’, I recently went on a one-week-pack trial of prednisone, on the theory that it would help detect/rule out the possibility of some auto-immune involvement.
My personal anecdote is that I felt MUCH BETTER the first two days — the pain went *away*, tho i was still tired. The muscle spasm-related pain went away also. Note: I was not taking any other medication, just the prednisone.
As the dose went down, the symptoms that were particular life-impacting — the pain, the muscle spasms, the spaciness — came back. I went back on the meds just for functionality.
Additionally, some significant edema I have in my legs went down by at least 50%, by both my assessment and that of my massage therapist.
Alas, that’s come back also.
My appointment with the rheumatologist who prescribed this trial is on the first.
Hydrocortisone can be extremely helpful for CFS/ME and possibly fibromyalgia. Several studies have shown evidence of this – I don’t know why you didn’t manage to locate them. Hydrocortisone is the name used for synthetic cortisol, so they are essentially the same thing.
Some people benefit dramatically from prednisone (myself included – though I’ve quit it a long time ago and am now on low dose naltrexone), but this is very rare. Usually the risks outweigh the benefits. Low dose hydrocortisone, however, is an extremely safe and well-tolerated treatment and helps many people.
Greetings,
Maija Haavisto, author of Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia
Hydrocortisone is one of the only things that helps me, even more than pain killers. I have seen a bunch of studies saying it makes no difference, but it does to me. Just some anecdotal evidence for someone with FMS who has tried it.