Fibromyalgia is a common condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression, and anxiety.

Wednesday, May 12, 2010

Today is "Fibromyalgia Awareness Day"

Today is Fibromyalgia Awareness Day, a day that we recognize fibromyalgia as an actual illness and help to make the public not only more aware of it but also to a better understanding of what sufferers experience. 

It is very difficult and many times lonely living with this disease because it isn't something that can be seen so others don't always understand.  Many sufferers won't complain about pain because they don't want to be labeled a whiner.  Believe me I do know how that feels but sometimes we just need to speak up and better educate those around us.

My sister, who lives in a different state than  I do, has often brought up the fact that I don't work outside the home.   She mentions that if I just had a job that I wouldn't have all this time to think about my problems.  I can't tell you how difficult it is at times not to get very defensive and angry with her because she has absolutely no idea what fibromyaligia is.

That is part of the problem; most people don't really know what in the heck fibromyalgia is because no two patients suffer the same degree of pain so it's hard to pin down exactly what it is.  Telling someone that you just have pain or ache doesn't seem to satisfy them so explaining how your brain neurotransmitters confuse the signals regarding pain may make them roll their eyes at you.  I can just here my sister saying "So, you mean you don't really have the pain, so what's the problem?" Ugh!

I think the key is having a supportive friend or group that you can go to that will understand exactly how you feel.  I have a sister-in-law who has fibro so we "get" each other and it really helps when we go out together.

My next post will be some tips to better sleeping, so stay tuned.

Until next time:)

7 comments:

Dominique said...

You know the other comment that makes me really defensive - although I'm getting better - is the one where someone tells you they have found the cure. You just have to take such and such, and walla you'll be well. Hate that one!

I hope you foot is feeling a little better today.

I'm am in bed dealing with the after affects of a shattered tooth.

We definitely have eventful lives if nothing else, huh?! LOL

Christine Burgess said...

I'm so sorry to hear about your tooth. Hope everything is going to be O.K. there.
Yes, we just have to have humor in all this or we might go completely nuts.
Another one that gets to me is when my husband has a sinus headache or something and he withdraws and becomes snappy and wants to lie down to get rid of it. What would he do if he had my body to contend with?LOL
Hang in there Dominique.

rlee8235 said...

I stumbled across your blog...I loved reading it!

Christine Burgess said...

Thanks so much.

Jeanette [Maisy] House said...

hi christine, what a super blog! i'm following you now :)

i also posted in an old etc thread of yours on etsy but in case you miss that, you might be interested in this new facebook group i started: http://www.facebook.com/home.php?#!/group.php?gid=124500440912051&ref=mf

i'm going to link this fab blog on there now...
maisy :)

Lucy said...

Brilliant post :) I've followed you over from Etsy.
I have ME and completely agree with how I don't talk about it anymore. I've had it 3 years now since I was 17 and I've just learnt to cope with the pain and other symptoms a lot better so people assume I am better. I just don't tell them when I'm feeling bad so they don't have to put up with me whining.
Luckily I have very supportive family and friends, who, though they don't always understand, will do anything to make me feel better :)
Lucy

Christine Burgess said...

Thanks so much for following along. I love to hear how others deal with their illnesses and I appreciate your comments.