Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Via online registration, I was part the webcast meeting of the FDA for fibromyalgia drug development. It was riveting-- the fact that finally there is this recognition and that the FDA is soliciting patient feedback for a very difficult disease.
Patients' stories were all heart-rending. I could relate to almost all the symptoms, many much more severe than I suffer.
One person spent over $100k just to get a diagnosis (and I sweat the $25 co-pay).
Very touching story by a Chicago cop (loved her accent) who developed fibro from work related injuries (funny stories but not funny outcomes). I could relate to her trajectory: unemployment, disability, divorcing husband,
I think I saw the Daily Strength FM poster who writes about naltrexone...forgot her moniker but it was neat to hear her and almost see her face.
the FDA repeatedly polled the participants about which symptoms were the most troubling. Big surprise (not) : Pain, fatigue and choose from the big list: sleep, anxiety & depression, etc. etc. I thought it was kind of dumb waste of time. Like they didn't believe what the research is? or what patients have been saying (that pain, fatigue, etc are not fully relieved despite FDA approved drugs for fibro?)
Medical marijuana wasn't mentioned by participants, possibly because they were sitting at a federal agency and were too scared to mention it. I did online as it is helpful for severe muscle pain for me and for muscle spasms for MS folks. Nor did the FDA bring it up.
There were at least three, almost apologetic, mentions of opioid therapy as being excellent for pain relief with few side effects (except one participant said it made her high).
FDA wanted to know about the side effects of the (only) FDA approved drugs for fibromyalgia (Savella, Cymbalta, Lyrica). Their efficacy is only poor-fair and the side effects are huge. The leaders of several groups gave meaningful details on these matters.
Did any of you see the webcast? What did you think of it?
Patients' stories were all heart-rending. I could relate to almost all the symptoms, many much more severe than I suffer.
One person spent over $100k just to get a diagnosis (and I sweat the $25 co-pay).
Very touching story by a Chicago cop (loved her accent) who developed fibro from work related injuries (funny stories but not funny outcomes). I could relate to her trajectory: unemployment, disability, divorcing husband,
I think I saw the Daily Strength FM poster who writes about naltrexone...forgot her moniker but it was neat to hear her and almost see her face.
the FDA repeatedly polled the participants about which symptoms were the most troubling. Big surprise (not) : Pain, fatigue and choose from the big list: sleep, anxiety & depression, etc. etc. I thought it was kind of dumb waste of time. Like they didn't believe what the research is? or what patients have been saying (that pain, fatigue, etc are not fully relieved despite FDA approved drugs for fibro?)
Medical marijuana wasn't mentioned by participants, possibly because they were sitting at a federal agency and were too scared to mention it. I did online as it is helpful for severe muscle pain for me and for muscle spasms for MS folks. Nor did the FDA bring it up.
There were at least three, almost apologetic, mentions of opioid therapy as being excellent for pain relief with few side effects (except one participant said it made her high).
FDA wanted to know about the side effects of the (only) FDA approved drugs for fibromyalgia (Savella, Cymbalta, Lyrica). Their efficacy is only poor-fair and the side effects are huge. The leaders of several groups gave meaningful details on these matters.
Did any of you see the webcast? What did you think of it?
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I'm alive, I'm sleeping like a rock, and for some reason I wanted cherry juice so that seems to be helping. (??? Weirdo that I am.)***Infamous therapies over history:1. The Attic. The madwoman in the attic is a motif in literature going waaaaaay back: the nutty female relative is locked in the attic. (See: Jane Eyre by Charlotte Bronte for a grotesquely racist version of it, and Charlotte Perkins...
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
When you're listening to respond its not the same as just listening, so I feel like I missed or forgot some things, and I'd just like to listen as a part of the "audience."
I am so glad you made it through and I hope you're not paying too high a price for having gone.
It's really a big step in unveiling our disability.
Thanks again and for your advocacy work.
There were other parts to the entire screen: a section to write in your comments, a simultaneous transcript of what was said, a huge slide section. I wish the camera on you guys was a much larger portion.
That might be the feedback I'd give the organizers.
Anyway, I think the human factor is always important - people relate best to other people.
I don't consider the original uses of the meds to be all that significant. Many treatments were developed kind of "by accident" when somebody realized that a drug developed for one use had an unexpected benefit on a different condition. Best example: aspirin in the treatment of heart attacks and strokes. It was once used for headaches and minor pain only until somebody realized the blood thinning "side effect" had its own medical use.
The patients at the meeting were treated with great respect and thanked for being there, and the "cost" in terms of pain and fatigue. was acknowledged. I've never felt quite so validated.