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 bearsgrove@gmail.com.

Thank you very much.

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

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

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

Free Screen Magnifier Software

This isn’t where I usually get geeky, but I think this utility might be useful to many readers.

I get notices from the Giveaway of the Day and Game Giveaway Of the Day sites each day as to what they have available that day. They make arrangements with various software publishers to distribute commercial software absolutely free in return for advertising. The catch is that the software must be downloaded and installed within the 24-hour period of the giveaway.

I’ve been watching the site for a year or so, I think, and have downloaded and tried quite a few pieces of software. I’ve never found any malware in any of them, although I believe I’ve read mention of people getting unwanted software installed in a bundle because they didn’t pay enough attention to what they were agreeing to during an install.

Getting back to my point, today’s giveaway is a nifty utility that will magnify a portion of your computer’s screen, enabling you to better make out tiny print or small details. I didn’t have one of these installed on my machine until about nine months ago, and I wouldn’t want to live without it now. There is a free utility built in to Windows, but it isn’t quite as robust as some of the other products on the market. The description for this one says:

Magic Lens Max is a real-time, intuitive and advanced screen magnifier and desktop viewer to zoom, rotate, enhance, view and capture any area of the screen display. With built-in highly optimized resampling and enhancing filters, Magic Lens Max quickly generates high-quality lens view with clarity in various situations. It also lets you viewing in different color mode or through separated color channels.

As I type this, there’s another 22 hours and 55 minutes left to download and install Magic Lens Max. Why not give it a whirl?

(Yes, it’s a Windows app. Aren’t we the only ones who need such crutches?)

Oh - while I don’t find today’s free game offering terribly interesting, I have found some of the games to be very useful distractions on days that involve too much pain to do anything and I can’t focus well enough to read. Popping bubbles or whatever is a perfectly mindless pursuit, and very conducive to zoning out and get my head away from the pain for a bit. I don’t do “twitch” games, or anything that requires a lot of dexterity or is completely tied to speed. If I was that dextrous and/or fast, I’d be doing something more useful than playing computer games.

February 23, 2008  Tags: , accommodations, Magic Lens Max, software, utility  Posted in: Resources, Technical  No Comments


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