[personal profile] quiara
So I've let this community flounder. I guess I had a bit of a negative experience with another community owner right at the beginning, but hey, that was 2009 and we're obviously knee-deep-and-sinking into 2011.

I intend to resurrect this community and, I hope, provide useful information along the way. I'll just pause here to say that I'll be looking for other maintainers/moderators to help keep things going once they get get going. If you feel like that's something you'd be interested in, kindly shoot me a message and we'll talk.

I'm also going to re-jig the profile a bit. From the looks of it, it originally looks like I intended to disallow any talk of the bad days of fibro -- and that's not at all my intent. I just hope that the information sharing done here will lead to lives lived more fully and, I hope, with less pain.

Neither I nor any of the other members have license to dispense medical advice in this forum - and none acting as such will be tolerated. Nothing you read here is a substitute for actual medical attention. But I hope that what you will find here will be information you can put to use to evaluate ways in which you might live your life with less pain. Discussing the efficacity of a medication or treatment in regards to your own experience is absolutely fine. Telling others what they must or must not do, seek or try is not. This is a place to exchange ideas, not to issue edicts.

So, with that, I guess this shindig is read to go. Feel free to jump in immediately.
dragonsally: (Default)
[personal profile] dragonsally
 Chronic Overlapping Pain Conditions Webinar 

Hosted by the CFIDS Association of America 
Date: Wednesday, May 5, 2010 
Time: 3:00 PM (Eastern Daylight Time)

Description:  If you'd like to learn more about chronic fatigue syndrome, endometriosis, temporomandibular disorders and/or vulvodynia, please register for this informative program.     
Speakers include: 
      Kim McCleary, President & CEO of the CFIDS Association of America 
      Mary Lou Ballweg, President & Executive Director of the Endometriosis Association 
      Terrie Cowley, President of the TMJ Association 
      Christin Veasley, Associate Director of the National Vulvodynia Association 
To register, please visit:

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[personal profile] ingo
Things are a bit quiet around here, so I thought I would post a list (I like lists) of things that are making my life easier right now.

1) Audiobooks. They're great for when I'm too tired or sore to hold a book, or when I'm feeling particularly light-sensitive and just need to shut my eyes but don't want to sleep. I had my doubts at first, because I've always been a fast reader (and never wanted my parents to read to me) but now I'm really enjoying them. I have a headphone splitter, so my partner can listen alongside me if she likes. We are currently listening to Trickster's Queen by Tamora Pierce, and it is awesome.

2) My showerseat. I have a walk-in shower, and find it a bit overwhelming at times, so the seat makes the whole process a bit easier. Good if you tire easily or get dizzy, and it makes the whole towelling off malarky a lot less strenuous as well. It's also good if you shave your legs, because trying to do that standing up is just not fun.

3) My plug-in vibrating heated pillow. It's white and fluffy and is good working out stiffness around the back of my neck and my shoulders although I'd really like a bigger one for my thigh muscles.

4) Wheat-filled heatpacks. My partner made me two and they are amongst my prized possessions. They're softer and more flexible than a hot water bottle and exert a different kind of pressure to the vibrating pillow, and they are particularly helpful for jaw pain, I have found.

5) Sweet, sweet codeine. It is the drug of the gods. Or at least, the drug that stops my head falling off.
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[personal profile] kitrona
I am having trouble. I got a referral from my primary doctor to go to a pain clinic, but my insurance doesn't have anyone within 30 miles of me, so they said they'd approve someone outside the network. But I've called probably 7 or 8 different places (some of them more than once when I got transferred around) and the places I've found either a. don't accept outpatients (inpatient only - hospitals) or b. refuse to even consider taking the approval from my insurance.

I don't know what to do, and with the weather changing, I'm in a lot more pain than usual. Does anyone have any ideas?



Apr. 20th, 2009 10:11 pm
quiara: (elephant!)
[personal profile] quiara
Well, I haven't mentioned this community on [site community profile] dw_community_promo yet, but some people are noticing it exists and seem to think it's a good idea. I'm glad!

I thought I'd write up some things I've found to be helpful in my dealings with fibro. I was diagnosed not terribly long ago after a long bit of eliminating other causes and there are some co-morbid conditions that complicate things. But overall, I've found that several things help.

  • Stretching: I find that yoga and just focused stretching tend to be easier to do consistently, even on days when I hurt the worst, than, say, treadmill or biking or walking would be. Stretching is something that can be tailored to how I'm feeling; it can be intense or gentle and I find that more often than not, I feel almost immediately better after spending at least 10 minutes doing focused stretching and breathing.

  • Medications:: Specifically for fibro, I take neurontin (gabapentin) and tramadol. They have, in my case, very few side effects and the benefits are incredible. I find my pain is substantially reduced and it doesn't make me feel high or stoned to take them. I also take citalopram (celexa) and trazadone (desryl) for depression/insomnia and they help as well.

  • Music: And, on a related note, dancing to my music. I find that my pain is always worse if I happen also to be fairly depressed and vice versa. So alleviating one often helps with the other. If I notice I'm drifting toward a darkened state of mind, I'll pick some music that makes me feel good and after a few minutes, I get up and move to the music and eventually I'm dancing. It's exercise, it's a mood elevator and the endorphins help control pain. I'm a fan.

  • Daily pain/trigger journal: I keep one of these to identify patterns. It's a paper journal I keep with me so I can note where I hurt, when and what things might have contributed to it. I can take these to doctor's appointments and i can read back over them and see what things may have helped and what things may have made things worse.

I know that these are things everyone may already know, but it's stuff that has helped me live better. What are some things that have helped you?
quiara: (elephant!)
[personal profile] quiara
I've been part of other fibro communites -- not just LJ, but other online and 3D fora dedicated to the disease. And I noticed an inevitable trend: we hurt and we want others to know we hurt so that we can commiserate about the hurt. This community, however, is different.

What I envision here is people posting ways in which they're conquering the effects of fibro in every aspect of their lives. It can be small things or large things, thinks that help one aspect or many aspects. Exercises, supplements, medicatons, doctors, research, articles, etc, are all welcome here. But this is not the place to post just to say "I hurt." We all hurt. What we need are ways to focus on the positive things we can do to ameliorate that hurt, that pain.

I'd love to have co-mods as well, though the community membership and posting are (currently) unmoded. Mods would be primarily to keep things on topic (broad as it is) and to put out fires, should any erupt. Please comment or message me to let me know what you'd like to see and whether you think you'd be interested in helping put this comm together.

Join in and post away!


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Life with fibro: living to the fullest.

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