Cortisol and FMS and CFS/ME?

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.

Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
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5 thoughts on “Cortisol and FMS and CFS/ME?

  1. I could have sworn that cor­ti­sol is asso­ci­at­ed with the neg­a­tive symp­toms of on-going stress.

  2. 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.

  3. 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.

  4. 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.

    Mai­ja Haav­is­to, author of Reviv­ing the Bro­ken Mar­i­onette: Treat­ments for CFS/ME and Fibromyalgia

  5. 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.

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