Interview: Chronic Pain and Sex

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.

May 14, 2008  Tags: chronic pain, intimacy, relationships, sex  Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news, Pain  No Comments

FMS/CFW Awareness Day!">Whoops! Yesterday was FMS/CFW Awareness Day!

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 :-)

May 13, 2008  Tags: Awareness Day, May 12  Posted in: Chronic Fatigue Syndrome, Fibromyalgia  No Comments

Special Request to Fibrant Living Listeners

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 moc.liamgnull@evorgsraeb.

Thank you very much.

March 25, 2008   Posted in: Podcast, Technical  No Comments

FMS at PostSecret">FMS at PostSecret

Did any­one else see this at Post­Se­cret today?

safer.jpg

I was made aware of it by a post to [info]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?

1 I can’t read Post­Se­cret reg­u­larly. It’s too fas­ci­nat­ing, and a big time sink!

March 23, 2008  Tags: anxiety, fear, PostSecret  Posted in: Chronic Fatigue Syndrome, Fibromyalgia, Pain  3 Comments

FMS and CFS/ME?">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, 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.

March 22, 2008  Tags: CFS, Chronic Fatigue Syndrome, cortisol, Fibromyalgia, FMS, hydrocortisone, ME, prednisone, steroids  Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news  5 Comments