My goodness. I think somebody over at Home on the Strange might have encountered one of those people who makes life so hard for those of us who really have invisible disabilities! Go on over and read the comic. I don’t want to spoil the surprise!
I responded to a post in a friend’s LiveJournal, in which she talked about a friend of hers who has just been diagnosed with chronic fatigue syndrome. Her friend was very upset that my friend didn’t believe there is a cure for fibromyalgia or CFS (at least, there isn’t one right now). This is part of my response.
I think that the fact that there’s finally acknowledgment from the CDC and the like that CFS is real, and research proving that FMS is real and showing a genetic link, is very promising. That greatly increasing the probability of research being done that might find a cure, or at least decent treatments.
But no, I don’t really look for a “cure” for either disease. I think the best we’re going to see for some time is better treatments for the symptoms. I’m fairly certain that both diseases will be found to be genetic weaknesses triggered by environmental conditions that damage the nervous and/or immune systems. Gene therapy may be able to repair some of that damage. Maybe. Germline therapy might offer our descendants the possibility of not passing the genetic weaknesses on to their children.
But - not expecting a cure doesn’t mean that I don’t pay attention to the research and the latest information available about treatments.
I think hoping for a cure, in some ways, can be a way of trying to shift responsibility for how we proceed to the medical establishment. If there isn’t one coming, the only improvement we’re going to experience is what we manage with what’s available now. The improvements we make in how we eat, move, sleep, interact, etc. are up to us, and they can make a huge difference. We can get some relief from currently available medications by working with our doctors. We can use various techniques to improve our cognitive functioning or prop ourselves up despite fibro fog. And if we aren’t sitting around waiting for somebody else to hand us a cure, we’re more likely to do those things.
Not that it’s news to those of us who have it, but it’s good to be validated!
Fibromyalgia often has been misdiagnosed as arthritis or even a psychological issue. Increasingly, though, the scientific knowledge about fibromyalgia is growing, and a new paper from the University of Michigan Health System says there are “overwhelming data” that the condition is real, is characterized by a lower pain threshold and is associated with genetic factors that can make some people more likely to develop fibromyalgia. …
“It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously as we endeavor to learn more about the causes and most effective treatments for these disorders,” says Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School’s Department of Internal Medicine and a researcher at the U-M Health System’s Chronic Pain and Fatigue Research Center.
The name of one of the authors of the paper, Dr. Daniel J. Clauw, will be familiar to many of you from other studies on fibromyalgia. He says that, “In people without pain, these structures encode pain sensations normally. In people with fibromyalgia, the neural activity increased. These studies indicate that fibromyalgia patients have abnormalities within their central brain structures.”
ScienceDaily: Pain From Fibromyalgia Is Real, Researchers Say
The first episode in the new, shorter format, recorded on my very own microphone. Thank you for your patience in waiting for it!
Most of today’s show is about audio entertainment and information, which is great when the fatigue is so bad that listening is one of the few things we can do.
Links:
- Audio Books
- Audio-Book-Rentals is a blog that compares and reviews the various audiobook rental services that are available.
- Simply Audiobooks - the only one I’ve tried personally.
- Kitable - said to have an especially good selection of science fiction and fantasy.
- BooksFree - has both paperbacks and audiobooks, but they certainly don’t seem to be “free.”
- Audiobookworld
- Recorded Books
- Audible.com
- LearnOutLoud.com
- Podiobooks.com - free, original fiction sent to you one chapter a week.
- IPodder.org’s audiobook category
- LibriVox is related to Project Gutenberg
- Podcasts
- Podcast Pickle
- Podcast Alley
- Podcast411
- Yahoo’s Podcast Directory
- Podcasting News
- Digital Podcast.com
- IPodder
Questions for you!
- Do you prefer shorter or longer podcasts?
- What topics do you want to hear about?
- Do you like having music in the show?
- Do you want me to post transcripts of the shows?
Thank you! And remember, I always love hearing from you. Comment here,
e-mail me, or call me at 206-350-0021.
‘Til next time, be good to yourself!
Fibrant Living is produced by Sam Chupp and is a member of the Fireheart Foundry family of podcasts. Music for the podcast is by Kimo Watanabe, and comes from the Podsafe Music Network.
I gave myself a gift today: a headset with my very own microphone for the podcast.
It isn’t as fancy as the one that I was using, which is my partner’s Very Nice (read: intimidating) microphone. That one, though, sits on the desktop on its own stand. I know this sounds pitiful, but I have trouble staying within proper range of it, because my voice is soft. I have to lean over and up from the chair I’m in, and even then I end up feeling as if I’ve had to nearly shout to record a podcast, which takes far more energy than simply speaking normally and is very stressful, to boot!
That removes one of the main barriers to getting podcasts out on a regular basis. The next is that Sam produces the show for me, but he has a full-time job and is much busier than I am outside the home. Do I dare release the show unedited, brain fog effects and all? What do y’all think?