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shadesong: (Unable/Lack of spoons)
Sunday, July 13th, 2008 09:49 am
...because this book is due back tomorrow...

All material beneath the cut is from The Fibromyalgia Advocate, by Devin Starlanyl; just stuff I need to remember. In some cases, stuff that surprised me.

Fibro Stuff )
shadesong: (Everything hurts/Doesn't work)
Tuesday, September 11th, 2007 08:32 am
Excerpt from Paula Kamen's All In My Head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache:

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One friend responded that in reading the article detailing the miseries of chronic pain, she kept thinking of Dr. Seuss's classic book Oh, The Places You'll Go!, a treatise on the natural cycles of life. In the book, Seuss described an inevitable unpleasant place, "The Waiting Place", where all of us are doomed to spend time when life is just put on hold and you can't do a thing about it.

I agreed with the observation that this is what having chronic pain is like, but then I also thought: To a chronic pain patient, The Waiting Place means more. It does not just represent a temporary stop now and again; it's a way of life. For when all else fails for a pain patient - when neurology becomes destiny, when pills and powders and positive thinking don't work - waiting is all we have left.

We wait sometimes for an hour to feel better, so we can then finish writing a report. We wait three nights to return a phone call to a friend. We wait a week to get the energy to scour a bathroom tub. We wait an entire summer to withdraw from a powerful drug, meanwhile moving through the edginess and tremors and insomnia and blurred vision that it leaves in its wake. We wait an entire year, pill by pill, to see if a class of drugs will work over time, in higher and higher doses...

In this process of trying to live in the moment, we face constant tensions and contradictions, many all at once: the struggle between pushing through the pain or ministering to it; the struggle to be dependent on others or stand on our own; the struggle to continue an expensive and time-consming treatment or move on; the struggle to accept our disability while not overly identifying with it; the struggle to take responsibility for our health, but then not feeling guilty when the pain persists.

And during this time, here is the real challenge: while we wait for pain to release its grip, we try not to put the rest of our lives on hold, and to manage to participate in other parts of life as best we can.
shadesong: (Spoons)
Monday, July 2nd, 2007 10:05 am
Original article link - reproduced here in case it goes away!

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The best new pain cures, with a focus on women

By Melanie Haiken
Health.com

You've got achy shoulders from carrying the kids, the groceries, or your incredibly heavy handbag. You look for the right pill to pop, but what should you take? Aspirin? Ibuprofen? Or, you're about to get your period. You know you'll get killer cramps or that nasty headache any minute now, but nothing you take seems to help once the pain hits.

You're not alone: Many women have a tough time finding the right kind of relief for their pain --and for good reason: Until recently, experts hadn't actually studied women's pain specifically, and most research wasn't conducted with a woman's hormones and physique in mind. All that's changing, though.

Docs now know that to banish our aches, they must develop treatments formulated for women's bodies. What's more, researchers are also looking for -- and finding -- ways to head pain off at the pass, so those of us with chronic troubles such as migraine, fibromyalgia, or backache don't have to be hobbled by pain on a daily basis. Here, how the new research will help you live an (almost) pain-free life. (Health.com: Smart ways to banish pain)

Read more... )
shadesong: (Everything hurts/Doesn't work)
Tuesday, June 12th, 2007 11:42 am
It was a year ago this month that I was diagnosed with fibromyalgia.

I'd been having the symptoms since... March? April? I didn't write about them, because I didn't want to acknowledge them. The pain I felt during my Boston birthday party visit. The stiffness when I rested for just a few minutes.

Epilepsy was enough. The tendonitis was enough. I couldn't even think of dealing with anything else.

It was the trip down to Florida that did it. Straining my muscles by pulling suitcases, stiffening in the cramped plane seat - the pain when we were disembarking in Atlanta was so awful that I could no longer hide it from Adam. And he made me see a doctor. Preliminary diagnosis of fibromyalgia, confirmed by blood tests that proved it wasn't lupus.

I've been in pain every day for more than a year now. I have had to change... everything.

I don't really feel like finishing this post right now. Don't worry, not depressed. Just... stoic. And tired. And my arms and shoulders hurt, so typing is not comfy. And... I don't know what to say. Pain has become part of my everyday life. One day I'll be able to express what that does to a person. Today is not that day, I suspect. Brain is just too tired.
shadesong: (Smile)
Friday, May 25th, 2007 11:04 am
I have a Curves Buck. Two, now. *clips her Curves Buck to fridge*

Why does this matter?

My local Curves gives one (1) Curves Buck for every week that you go there three (3) times. When you have a neat little pile of them, you can trade them in for t-shirts or water bottles or whatever. That's not the important part.

The important part is that my Curves Buck means that three times this week, I wrestled my schedule into submission, shoved aside the fibro fatigue, told the low-level pain to step the hell off, and I walked 1.3 miles, had my doctor-recommended low-impact resistance-training workout, and walked 1.3 miles back.

It means that I am putting my health first, even when it's hard - exercise is crucial to managing fibro, exercise and rest. I'm pushing aside all the Stuff What Needs Doing and putting self-care, taking care of this fragile gimpy body, first.

This is hard, this change in my life. Going from Superwoman to this, to wondering every morning if I'll be able to walk downstairs without pain, if I can push back fatigue enough to put away the laundry, if I'll have the arm strength to lift the coffeepot. Some days are better than others. Some days are almost normal. And it's taking care of my body, actively doing so, that makes that happen.

And I will be damned if I won't do everything I can to give myself a life.

So I have a Curves Buck. (Yes, Robyn, I can has Curves Buck!) And it shines as brightly as the gold stars I got in kindergarten. Because, small as it may seem to some - I worked for that, and it means something.
shadesong: (Everything hurts/Doesn't work)
Tuesday, November 7th, 2006 09:49 am
The Daily Science really isn't, today, so much as it's Daily Medical/Science.

***Using sophisticated brain-scanning and a carefully controlled way of inducing muscle pain, the researchers show that the brain’s dopamine system is highly active while someone experiences pain – and that this response varies between individuals in a way that relates directly to how the pain makes them feel. It’s the first time that dopamine has been linked to pain response in humans.

***Researchers at Johnson & Johnson Pharmaceutical Research & Development (J&JPRD) announced on 15 October 2006 that they have discovered a new molecular mechanism that may underlie neuropathic pain. The clearer understanding of the root-cause of chronic neuropathic pain, and the preclinical validation of new targets for pharmaceutical therapies shown in this research, together present an opportunity for the development of new ways to treat the severe pain associated with such common conditions or diseases as sciatica, diabetic neuropathy and shingles.

***In an article titled Posttraumatic Stress Disorder, Tenderness, and Fibromyalgia Syndrome: Are They Different Entities?, researchers in Israel discussed findings on the resemblance between some of the features of fibromyalgia (FMS) and the symptoms of posttraumatic stress disorder (PTSD). Published in the Journal of Psychosomatic Research (Volume 61, Issue 5 , 11/06, Pages 663-66), this article describe a remarkable level of FMS symptoms present in men with combat-related PTSD.

For my reference - stretches for pain relief, and the TheraCane, which I am officially putting on my $WINTERHOLIDAY wishlist. So I can get at that ouchy spot between my shoulderblades.