The interview we did is up!
Chronic Pain and Sex: a Couple’s Gentle Battle With Fibromyalgia

I’m pleased with it. There are very few, mostly immaterial inaccuracies.

I intended to post and maybe even try to get a podcast out, but ended up using my energy to do an interview with a reporter. I don’t know when the piece will come out (it wasn’t for awareness day — that was just an amusing coincidence), but I’ll let you know when/if I hear anything.

She also interviewed Sam, since the topic was “fibromyalgia and intimacy.” He’s so wonderful!

I hope all of you had a great day

Edit: THANKS TO KATIE, we found backups of the podcast files we were missing. Thank you Katie!

This is Sam. I am the producer of the Fibrant Living podcast that Cynthia writes and records.

The lack of download links on Fibrant Living #1, #2, and #3 are my fault.

I thought that Libsyn’s archive was in perpetuity, but it wasn’t.

Now that they’ve done spring cleaning at Libsyn, Fibrant Living podcast #1, #2, #3 are all gone. I have no backed up copies of these podcasts. My hard drive crash in the summer last year, coupled with Cynthia’s laptop death, means that we as a family don’t have any extant copies of these podcasts.

If you have these, please let me know. Comment here, or send me email at bearsgrove@gmail.com.

Thank you very much.

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.