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5/12/2009

Fibromyalgia Awareness Day And M.E./C.F.S. Awareness Day



I had grand plans for how to do justice to the topic of fibromyalgia for Fibromyalgia Awareness Day. Unfortunately, I’m having a severe fibromyalgia flare and I don’t have the energy to write it. Ironic, I know. The last couple of days have been challenging fibromyalgia-wise due to sudden changes in temperature. Last week it reached 86 degrees Fahrenheit one day. This morning it was 40 degrees Fahrenheit when I got up. That kind of temperature shifting causes my fibromyalgia to flare badly. I have talked with other bloggers in the last few days who have fibro and are experiencing flares like this too.

I recommend following @fightingfatigue on twitter. Her blog is excellent. Check it out: Fighting Fatigue. Sandy has been supportive of the endometriosis cause and has been retweeting our messages on twitter. Let's support her likewise. I wish I could write more but I am totally exhausted today. Every muscle hurts. It feels like every molecule and cell in my body are talking to me... and I don't like what they have to say. So I am not going to be able to write an elaborate blog post today. It is a major effort to be at the computer at all right now.



Today is also M.E./C.F.S. Awareness Day. I wanted to mention it too. I have recently met some wonderful people on twitter who are working for the M.E./C.F.S. cause. They have also been supportive of the endometriosis cause. We have been retweeting each other's messages regarding M.E./C.F.S. and endometriosis.

Please follow @Killandra @perpetualspiral @redtoffee @runefox on twitter regarding M.E./C.F.S. (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are two names for the same condition. There is not strictly one term used worldwide).

@Killandra has a contest going on. Check it out!

Blue Ribbon Campaign for M.E./C.F.S.

I will post something at a later date when my symptoms aren't so active but I wanted to be sure to get this posted today for awareness day. Feel free too to browse through prior posts (more so on fibromyalgia than on M.E./C.F.S. but you should be able to find posts on both).

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

17 comments:

endogirlie said...

sorry you are feelin crappy, feel better soon :)

Jeanne said...

endogirlie,

Thank you! I still feel rotten overall but I had acupuncture today and it couldn't have come at a better time. So I at least have some energy now... and my fibromyalgia pain is definitely better than it was this morning (when it was truly difficult to move).

In the last few hours, my neuropathy has overtaken fibromyalgia for 1st place in the pain category.

I specifically asked my acupuncturist to focus on the fibromyalgia symptoms today because I knew that was what I needed most.

I really didn't expect to be online tonight. So the acupuncture has already done me some good.

I love acupuncture!

Jeanne

Fighting Fatigue said...

Sorry you are feeling so bad. Thanks again for mentioning me and my website. I appreciate it! I hope you feel better soon.

Jeanne said...

Sandy,

Thank you. Compared to this morning when I literally couldn't get out of bed, I'm just grateful that I have a wonderful acupuncturist. Thank heavens today was my scheduled appointment to see him.

Jeanne

perpetualspiral said...

Hi Jeanne, thanks so much for mentioning our Blue Ribbon Cause and some of the Blue Ribbon Army!! I'm sorry to hear about the flare - I've also hear similar reports from other fibro friends. But glad that acupuncture helps you :) Unfortunately I slept through most of Awareness Day today, but it's not about just one day for us, is it. Take care of yourself *hugs*
@perpetualspiral
http://www.ptsici.blogspot.com

Jeanne said...

perpetualspiral,

Thank you for your comment!

Yes, fibro flares seem to be running rampant for many with weather changes lately. I know many others dealing with it too.

Like you, I slept more than usual today. My day started out with being in so much pain that I physically couldn't get out of bed. Literally. My husband had to step in and take care of things I would normally do. That's how bad it was.

It's is a huge testament to my acupuncturist that I'm sitting here online now! Early today I never would have imagined this possible. Acupuncture is truly amazing!!

I agree that it's not just about one day. As with our endo awareness efforts, we certainly didn't flip a switch at the end of March and stop campaigning for endometriosis awareness.

It's a commitment to pursue progress every day of the year. You're right!

Thank you for the *hugs* and I certainly send some back to you.

I know you are a newer reader here and probably haven't read my policy regarding posting links in the blog comment section. I normally don't publish blog comments that contain links.

As I mentioned offline, I am making an exception in this case and posting this comment as is.

Clearly I want people to be able to find your blog regarding this important awareness campaign. I just wanted you to know for future reference about the links and I try really hard to be fair in how I moderate all blog comments.

Thank you for the *hugs* and I'm sending you bundles of *hugs* back!! :)

Jeanne

Jannie Funster said...

Shoot, I missed this for the 12th.

Sorry about yoor flare-up. Hope you're better now?

xo

Jeanne said...

Jannie,

I hurt from head to toe but what's new? Seriously, I am very sore and tired but I'm doing better than I was yesterday in the pre-acupuncture part of the day.

That truly was the turning point in getting some pain relief... having acupuncture yesterday.

Of course, the fact that I got my period yesterday did not help matters at all and no amount of acupuncture (or anything else) is going to magically wipe out the pain and fatigue that are hitting me with the fibromyalgia and endometriosis symptoms hitting me at once.

I'm just so grateful that I had acupuncture yesterday. I am functioning at a bare minimum level today but I am functioning. So I'm grateful for that.

Jeanne

Yaya said...

Somehow I missed this post, sorry!

I'm sorry your fibro is flaring up. :(
I hope the pain subsides soon. Just take it easy.

Ching Ya said...

Hi Jeanne,
I was directed here from Jannie's page. Nice to meet you. Spot on with the hashtag suggestion though.^^

Fibromyalgia is a big word for me. Thanks to you I gave it a Google and learn a bit from the facts as well. Good to know that acupuncture can help a bit. Hope you're feeling alot better now.

Do take care always. Best wishes.

@wchingya
Social media/Blogging

Jeanne said...

Ching Ya,

Welcome! Thank you so much for visiting my blog. Oh, the lovely Jannie. Nice to meet you too. :) Yes, wouldn't it be great if Jannie sets up a hashtag?

I think fibromyalgia is a big word for everyone. That is awesome! Awareness days are, after all, to generate awareness. So, if that prompted you to Google fibromyalgia, that's great! :)

Yes, acupuncture is amazingly helpful for so many things... I just love it! I'm having a rough week but I'm getting through it. Thank you.

Oh, I took a peek at your blog earlier and was checking out a twitter tool you had mentioned on it.

You take care as well and best wishes to you too.

Jeanne

P.S. I added you on twitter today. :)

Jeanne said...

Just a reminder (for some) and new news (for others) that I have a long-standing policy not to publish testimonials, drug names, supplement names etc in blog comments.

Thanks,

Jeanne

Jannie Funster said...

I got my period a day after my show - a good big rip-roaring one.

I woke in the night crying after my show and cried on and off the next day. It was a release I guess from so much build-up all those months. And not uncommon.

By by Tuesday I was pretty good again, back to the olde me.

Now,I've basically just sat on my butt all day at the computer but you know what -- it's okay to do that once in a while!!

And now I'm going to sip some wine!

xo

And you are an ABSOLUTE DOLL for tweeting me up and such. Extra wood for you this coming winter!!!

Jeanne said...

Jannie,

I'm sorry you got such a nasty period the day after your show for your new CD. (That's www.janniefunster.com to get her CD, everyone). Although I guess it could have been a whole lot worse if it had come just a day earlier, huh?

You're right, I think. Anytime you expend that much time and energy leading up to a 1 day event, there has to be some sort of crash or recovery afterwards. I'm sorry you were crying but sometimes a good cry helps, I guess.

I'm glad that you're feeling better. I know how fun endometriosis can make periods.

Yes, it's OK to have days like that (computer days).

Jeanne

xo

P.S. How could I NOT do everything in my power to help you promote your new CD?

1) You really have an amazing voice

2) You're an awesome friend

3) Your talent and hard work should be appreciated by many

4) You are a fellow endometriosis sister

--

Ah, yes... the wood. Yes, I will be needing lots of wood for my woodstove because you know what the cold does to my fibromyalgia.

It's easy during the bitter winter months to look forward to things warming up... but I always forget the part about how brutal the transition is OUT of winter. Somehow I always block that out of my mind until it hits me over the head.

Having it be 86 degrees here one day recently only to be followed by 40 degrees not too many days later really did me in. Weather changes like that are just brutal with my fibro. The back and forth switches just do me in.

I never thought I'd be worrying about a severe temperature-induced fibro flare in mid-May but that's just what happened this past week. (Then with my heat intolerance, I get to worry about how many times I'll faint during the summer... especially if it's really hot during my period).

No matter how sick I am, I can usually force myself to at least get out of bed (even if I wind up back in bed for a nap later in the day from exhaustion).

This past week, though, I found actually getting out of bed even more difficult than usual.

My husband ended up getting our daughter off to school 4 of the 5 weekdays this past week! That's normally my job... but I was physically unable to be out of bed at that hour. Literally.

Rolling over in the bed was a major accomplishment the one morning in particular. I was also having serious trouble speaking.

I was blown away by how sore I was all week. It didn't help that multiple conditions were flaring at once. That's always fun.

Anyway, I look forward to your wood shipment when we'll finally be able to meet face-to-face (or should I say "eye to eye" in light who who I'm talking to). :)

Dot said...

I sure understand that! Sorry to hear the weather whammy got you too. I don't know where you're located, but here in the DC area we've gone through the same wild temperature changes, plus a solid week of rain, a week of sun, a week of rain. Between pollen and mold, my allergies have gone nuts along with my FMS.

Jeanne said...

Welcome Dot!

Yes, the weather whammy is in full effect. I'm in NY. Today I had to be outside & it was so windy that I wished I had my warmest winter coat on. (I had made the mistake of thinking that a T-shirt, thick sweatshirt, and fleece jacket were going to cut it today because it was a sunny day).

I quickly learned I should have donned the parka. It's so hard to know how to dress this time of year for me... I'm always either too cold or too hot.

Yes, we've had the rain-sun-rain syndrome lately too.

I too have a range of seasonal allergies and issues with mold. So that is all factoring in to how I've been feeling.

Yes, my sinuses are not happy. I'm sorry that you are struggling with fibromyalgia and allergy issues now too.

I hope you feel better soon. I just took a peek at your blog and see that we have Jannie Funster in common as a buddy. :) She's so sweet! I hope her CD sells like hotcakes... she deserves it! (I've been promoting her CD on twitter).

Are you on twitter? I'd love to get a bunch of Jannie's readers to retweet messages about her new CD release. She has so many readers! May as well harness that power to get the word out. :)

She's @janniefunster on twitter.

Thanks for stopping by and commenting. It was nice to hear from you!

Jeanne

Jeanne said...

Alicia,

Considering that it has taken me 5 days to discover I missed your comment, I'd say you're in good shape and I'm the one who should be apologizing.

It's called tired and overwhelmed.

My fibro is still stubbornly speaking up but I'm more functional than last week. I'm still very sore, though.

If I took my own self-care advice, I'd take it easy like you said.

Unfortunately, I am so stressed about the mountain of things I need to take care of that I'm not doing that too well today.

Jeanne

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