Describe Fibromyalgia - Fibromyalgia Message Board

tkgoodspirit · 01-26-2005, 10:00 PM

I have a task for all of my fellow Fibromites out there on the boards.

If someone were to ask you "What does Fibromyalgia feel like?" How would you describe it. I know we've all been asked this before and it is hard to explain, but I want to hear from all of you so that maybe we can put together a good description that is short and to the point, but really makes the non-Fibro "feel" our pain.

I believe in my heart that most people may not understand how we feel, but they really do want to, so that maybe they can be a better friend, husband, wife, doctor, whatever. And I think it's up to us to try and make our people understand as best we can how we feel. If we ramble on with a colorful description, we will lose their interest, but if we can post little "clippets" of how we feel (our best whammie description) then we can use all of our own experience's with this condition to help others "feel" our pain.

Also, how many of you hear "Boy for all that is wrong with you, you sure do look good."? AAAAAAAAAAAAAAAAAAHHHHHHHHHHHHH!!!! This makes me nuts. Whenever I actually do go out, whether it be to a doc's appt or a freinds house (rare occassion) I like to look as nice as I can. I put on makeup and nice clothes, heck I even blow out my hair, only to hear "well, you LOOK great". I know it's a compliment, and if I say so myself, I DO look quite nice, but no one really "sees" my pain. I always tell them to make an unannounced trip to my house when I'm still in my jammies at 1:00 in the afternoon! So, I guess I'm asking, should we not try to make ourselves look nice in order for people to know that we are ill and in pain?

Okay, Okay, enuf of my b.s. Here's my best description of Fibro:

You know in the movies or TV shows where there is a scene of a spirit or ghost "taking over" someone's body so that they can use it for something. (like in the movie "Ghost") Well, that spirit is pain, and it has "stepped" into my body to use it. It uses it to live and it's living my life.

That's how I could describe it so someone could "picture" the pain stepping into my living body.

It could also be described as being like the "Cloak of Invisibility" in the Harry Potter movie, where the cloak covers Harry and Harry becomes invisible, but not everyone has seen the Potter movies. LOL

Okay, the floor is now open. Remember, try, if you can to be short but effective. This'l give you something to ponder and be creative! LOL

Big hugs to all my fellow Fibromites,
tk

P.S. Looking forward to hearing some good descriptions. Maybe we can use them when we go for our disability hearings!

miniswts · 01-26-2005, 10:08 PM

Great idea you have. I describe my fibro as being in a fog, like floating around. Constant pain when I have my flair-ups. God Bless you all.

corin · 01-26-2005, 11:24 PM

Though it is not adequate to encompass the vast issues we have to deal with, I try to get through to people the part of "looking fine" this way: I ask them to recall the worst toothache they ever had. The one that caused them to not eat, made them mean, grumpy and miserable. The desperation to get relief, and how it spread to headache, the face, the intensity and unrelenting throb, and how awful it would be to eat something really sweet on top of it. Then I have at least piqued their understanding somewhat. I also add, now imagine there is no dentist, no relief, and remember that unless you tell someone, no one knows you have this toothache, because we can't see it. Maybe toothaches are an excuse? I at least get a nod, but this soon passes. When told I don't appear ill, I just respond that at least something is working right today.

Mandiee77 · 01-27-2005, 12:02 AM

If I were to describe FIBROMYALGIA, its almost like a "silent" "invisible" illness, you dont look sick? You look so great today! But inside we all know the horribleness we feel each and everyday~ The constant feeling of bruises on my knees, the choking that I endure each time I eat, the sleepless nights and the oh so achy mornings, unless I take my drugs that dreadfully leave me in a world of my own way beyond comprehension. I sometimes ask myself, how can one illness cause so many problems in my life? The lack of sex drive, the extreme fatigue that makes me dwell in my house day after day. The days that I hurt so bad all over, I think is this the end? It is so uncomprehensible to someone who has not "experienced it" . This is an illness that I wouldnt "wish" on my WORST enemy, and thats the honest truth~

Hope all of you found some relief today,
God Bless,
Manda
Mom of 4 healthy kids, (thank you God)

Marimac · 01-27-2005, 12:28 AM

Fibro feels like some one beat me up and left me for dead. I feel like if you took a PET SCAN of my body during pain episodes, it would be lit up like a Christmas tree!