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!

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.

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.

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) :angel:

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!

It all sounds too dramatic to describe fibromyalgia like that. I think people would understand it most if one gives a technical description of the symptoms to those who don't know about it. I was diagnosed with fibromyalgia twice by two different rheumatologists. Once with my husband and the second time with a girlfriend of mine. The rheumatologists described it as follows (to my husband: it's an illness that will not kill her but that will make her very miserable. It's called the invisible disease. It's not in her head eventhough many times you may think that it is. She will have to manage her life in such a way as to discover how to monitor and control the situation. The other one (to my girlfriend: apart from the various pains that she described just now, think of the times when you are just about to get this big flu, the feeling of being feverish with all the pain that accompanies it. Well this is how she feels, very often, but without actually getting the flu my girlfriend had her eyes and mouth widen open after hearing that !). So both understood what's happening to me. Having said that, nobody is obliged, honestly, to hear us nagging endlessly and forever no matter how bad we may be feeling during flares. This illness is chronic my firends. when I'm REALLY bad and desperate I just rub myself against my hubby and tell him that I am all achy. That's all. Ah and something else too. During a flare nobody looks ALL THAT good. I've seen my face in front of the mirror and I've noticed the way I walk, it's really really not all that brilliant and radiant. Now, if somebody sees you on your pyjamas at 1 pm at home, then well, they are bound to think that, what the hell, snap out of it. I personnally work and work pretty hard too, whether in pain or not, so I believe that my husband who knows very well what I'm going through, respects me and admires me from being courageous (i'm not that courageous mind you, but only try to go on by continuing my life and fullfilling my obligations). Cheers to all

Fibromyalgia feels like total body arthritis, minus the arthritis for me.

I would tell someone w/ arthritis in one hand to imagine having that feeling in every joint and every muscle in your body 24/7.

Sometimes I get jealous of those who can go in and have the arthritis fixed in their hand. Or the person who goes in and gets a new knee. With fibromyalgia we don't have that option!! We have to live w/ the pain 24/7 for the rest of our lives. Plus the most overwhelming fatigue that rules what we get done during the day.

If someone not dealing w/ fibro woke up one morning feeling like I do everyday, they'd go back to bed thinking they had the flu. But, us w/ fibro have to learn to live with it....we can't exactly lay in bed the rest of our lives .... I think it makes us stronger and more sympathetic to those who are experiencing other illnesses.

The other day my husband went to the gym and had a really intense workout (it's been several months since he has lifted weights). The next night he rolled over in bed and told me he couldn't sleep because all of his muscles ached. I told him where to find the pain killers and he said, "This must be how you feel when you say your legs ache." Now he gets it!

i have one question in all of this. why would it upset you to look good and be complimented on it? the silver lining in fms is that we look great! i look healthier now than i did before fms. i love hearing anyone tell me how great i look. they are right and i like hearing it.
i do not expect any other person to "understand" fms or how i feel. describe it? okay, how about morning sickness and flu at the same time? but what about the good fms has gifted my life with? awareness of my body.
i like the way tutti put it. drama drives people away, as it should. i hate being around drama kings or queens. maybe because i used to be one. giggle! i could whine, gripe and snivel with the best of them. now when someone asks me what having fms is like i tell them it is the best thing that ever happened to me. i tell them about painting and listening to nature. i change the subject ever so discreetly and we go on to something fun to talk about. like my friend pat who left her body on thanksgiving day said, "i'm sick of talking about cancer. boring!! i wish people would let it go." she said that 3 weeks before she left.
pack your life with living, my friends. we never know the moment it will end.
peace,
bluelakelady

Great replies from everyone.

It's obvious by reading these posts that FM affects us all so differently and we have our own special way of dealing and living with the condition.

Some of you can work, some of us can't. Some of us have worked but now find it hard to finish a job. Whatever the case may be, we all have the same condition in common, and if from time to time, we can come here to share, learn and comfort each other than we are using our condtion to help others who may be having a harder time dealing with it. Not all of us handle this FM the same way.

I know, for myself, I can make myself "look" real good while I feel real bad, but, I have noticed that when I do get dressed nice, put on some makeup, and spend some time with a friend, I actually do feel a little better. Feeling love from someone who cares about me usually makes me feel a wee bit better.

Thank you for sharing. I hope I get to hear a lot more from others. It's interesting how different we feel, yet we all feel the same one way or another.

Thanks for sharing.
Here's wishing you a good spirit,
tk

i have one question in all of this. why would it upset you to look good and be complimented on it? the silver lining in fms is that we look great! i look healthier now than i did before fms. i love hearing anyone tell me how great i look. they are right and i like hearing it.
i do not expect any other person to "understand" fms or how i feel. describe it? okay, how about morning sickness and flu at the same time? but what about the good fms has gifted my life with? awareness of my body.
i like the way tutti put it. drama drives people away, as it should. i hate being around drama kings or queens. maybe because i used to be one. giggle! i could whine, gripe and snivel with the best of them. now when someone asks me what having fms is like i tell them it is the best thing that ever happened to me. i tell them about painting and listening to nature. i change the subject ever so discreetly and we go on to something fun to talk about. like my friend pat who left her body on thanksgiving day said, "i'm sick of talking about cancer. boring!! i wish people would let it go." she said that 3 weeks before she left.
pack your life with living, my friends. we never know the moment it will end.
peace,
bluelakelady


Sometimes it's the "drama kings and queens" who need our love and understanding the most. I believe it is for us who DO understand and deal with our condition possibly "better" than some one else to help THEM deal with it better.

Everyone deserves love and compassion, and where would the world be without a little "drama" from time to time.

Feelings aren't right or wrong, they just are.

tk

bravo tkgoodspirit, my sentiments exactly. Thanks for saying it. Please do not misunderstand, I think positive influences and inspiration are esssential, but just as needed is a safe, validated place to speak words we would rather not have to.

bravo tkgoodspirit, my sentiments exactly. Thanks for saying it. Please do not misunderstand, I think positive influences and inspiration are esssential, but just as needed is a safe, validated place to speak words we would rather not have to.


;)

tk,

Fibromyalgia feels like....I've been run over by a large truck, should be in a body cast, but am not, have to continue to move, work, etc...

Sometimes it's the "drama kings and queens" who need our love and understanding the most. I believe it is for us who DO understand and deal with our condition possibly "better" than some one else to help THEM deal with it better.

Everyone deserves love and compassion, and where would the world be without a little "drama" from time to time.

Feelings aren't right or wrong, they just are.

tk

hi tk,
good question.
i would hope that without drama our world would be a place of peace, compassion, and caring. drama is the worst thing a person with fms can indulge in. being a drama queen only made me sicker. this does not mean i do not express the way i feel. i do. it means i have altered my tone and body language so as to convey a sense of acceptance and peace with todays pains.
i know i am the odd kid out here. my mom says i have always been just a tad strange. mom also said i had a flair for drama from birth. i decided the attention being a drama queen was getting me was not healthy attention. when i chose to stop i found the attention changed to a much healthier, fulfilling one. i spent years in therapy learning how to be the person i knew lived deep inside me. these days i lecture myself with tough love and strong words. i know what i am capable of within my mind. am i one of the fortunate few? yes, i suppose i am. do i think i am doing something no one else can do? no. am i smart enough to keep the wheelchair, just in case? yep!
all i know for sure is that what i choose to think about myself is a free choice i have, and i am free to change that thinking every single day. i want to grow and evolve so that on the day i leave my body i am pleased with my journey. my body is what it is. my mind is still mine.
i have never said to any person here that i feel their way is wrong. there is no right or wrong as you stated, only different paths. as you exercise your freedom to speech here, so my friend, do i. i want you and everyone else here to feel hope stirring to life within you as i do. of course i want that for you. it feels so good i wish i could mail out bottles of it to everyone on the planet.
peace my friend, and a bottle of hope,
bluelakelady

tk,

Fibromyalgia feels like....I've been run over by a large truck, should be in a body cast, but am not, have to continue to move, work, etc...


I've only been diagnosed from my family doctor, who wants it confirmed by a rheumie, which I will be seeing soon, I'd describe it the same way as you aaronon. Run over.. but you have to crawl home and accept the fact that no one will help you, believe you or understand why you're depressed. Which most of the time is because we are mourning the loss of the person we were before that truck came along.

Hugs and Love,

Sharalee

hi tk,
good question.
i would hope that without drama our world would be a place of peace, compassion, and caring. drama is the worst thing a person with fms can indulge in. being a drama queen only made me sicker. this does not mean i do not express the way i feel. i do. it means i have altered my tone and body language so as to convey a sense of acceptance and peace with todays pains.
i know i am the odd kid out here. my mom says i have always been just a tad strange. mom also said i had a flair for drama from birth. i decided the attention being a drama queen was getting me was not healthy attention. when i chose to stop i found the attention changed to a much healthier, fulfilling one. i spent years in therapy learning how to be the person i knew lived deep inside me. these days i lecture myself with tough love and strong words. i know what i am capable of within my mind. am i one of the fortunate few? yes, i suppose i am. do i think i am doing something no one else can do? no. am i smart enough to keep the wheelchair, just in case? yep!
all i know for sure is that what i choose to think about myself is a free choice i have, and i am free to change that thinking every single day. i want to grow and evolve so that on the day i leave my body i am pleased with my journey. my body is what it is. my mind is still mine.
i have never said to any person here that i feel their way is wrong. there is no right or wrong as you stated, only different paths. as you exercise your freedom to speech here, so my friend, do i. i want you and everyone else here to feel hope stirring to life within you as i do. of course i want that for you. it feels so good i wish i could mail out bottles of it to everyone on the planet.
peace my friend, and a bottle of hope,
bluelakelady

Your reply is duely noted and appreciated. Thank goodness we all have different opinions.

I just feel a little defensive of our "drama queens and kings" sometimes. I used to work with a "drama queen", as a matter of fact that is what everyone called her. But at the same time, she was isolated by her coworkers, and she was constantly being made fun of, and I guess I just felt that she needed someone to listen to her, so I made an extra effort to listen to her, no matter how she chose to experss herself. And sure, somedays it was difficult to sit and listen to what I thought may have been a little "overdramatic", but I just couldn't tune her out, maybe I'm a bit to much of a pushover, but that's just me. LOL I still to this day visit her when I go by my old work place and ask how she is, knowing that I may be in for a long drawn out detailed reply. There are a lot of "drama queens" in the waitressing business, but thank goodness for them, because at times, they could make work a bit more interesting when you were being "slammed" by a bus of 120 all at once. :)

I also worked with a young woman who for years suffered from Anorexia and her main problem was she demanded attention. Starving herself to near death was one way she got it. We all worked with her for nearly 10 years, watching her go from 70 pounds to 120 pounds, then back down again, until one day, after all of us who gave her just a little more attention, listened to her when she talked only about herself and what was wrong with her, she put on the pounds, met a man, fell in love and got married. Something that none of us who knew and loved this young woman thought would EVER happen. She is the kind of person who thrived on the attention of others, she was just that way, but she is a beautiful person who is now happy with herself and her new life, and she still to this day requires a lot of attention, and I'll always be there to give it to her.

But, as we seem to have gotten off of the topic of describing FM I still am anxious to hear how people describe what it feels like to them. We can agree to disagree on how people may choose to express their feelings.
After all, as someone once said "All the world's a stage" :) And with that, I'll make my exit gracefully.
tk

I've only been diagnosed from my family doctor, who wants it confirmed by a rheumie, which I will be seeing soon, I'd describe it the same way as you aaronon. Run over.. but you have to crawl home and accept the fact that no one will help you, believe you or understand why you're depressed. Which most of the time is because we are mourning the loss of the person we were before that truck came along.

Hugs and Love,

Sharalee

Sharlee, I know that just receiving this dx of a condition that you are told has no "cure" and you know your life will be changed now. But at least you know what you have, and you can research every thing about FM, you can read our posts here, and hopefully that will begin to help you put your newly dx'd condition into some sort of perspective. And may I share some new info that I rec'd in a newsletter that deals with FM? Recent studies show that now, rheumies may not necessarily be the best doc to treat FM. There are a lot of rheumies out there who have made an effort to learn more about FM, and there are a lot who really don't like to treat the condition. Your family doc is doing the right thing for you by refering you, because getting a confirmation from a rheumy is pretty much protocal and you are on your way to getting a method of treatment specialized just for you.

The new study that was documented in my recent newsletter stated that FM may be too complex for some rheumies. So, go see your rheumy and see what he/she says. Tell them how you feel. There are fibromyalgia worksheets that you can find on the Net that can help you better document your pain to take with you on your appointment. Ask a lot of questions, maybe make a list before you go. And please keep us all posted here as to how you feel, and how your appt. goes. And welcome to the Fibro community, we are a special bunch, and so are you. You are not alone, I know it can be hard.

Thank you for sharing.
tk

tk,

Fibromyalgia feels like....I've been run over by a large truck, should be in a body cast, but am not, have to continue to move, work, etc...

aaronon: I respect and envy the fact that you are working. I know that must be extremely difficult especially when you feel exhausted and painful. I had to quit my job after being there nine years. I waited tables, and simply loved serving people their breakfast, lunch or dinner. It was hard physical work, but after getting FM I found that as more time passed I couldn't keep up with my station or remember orders, which was frustrating for me, because I was good at my job, and I knew it was slipping away.

Since I don't know your entire situation, I'm sure you are working because you need to support yourself, or your family, which, I'm sure makes working with FM all the more frustrating. I hated quitting work, but I was lucky at the time, that my husband was working, and we could get by. But just to share a bit with you about how things change. My husband recently lost his job and I have more than just the Fibro going on with me, so even when I quit my job in 2003 I felt "okay" cuz my husband was working, but see how things change? Not too long ago I even sat here thinking about going back to my old job to see if I could just sit in a corner and shuffle papers just to get some kind of income coming in, but I have such severe back and hip damage
I can't even sit, unless they bought me a recliner! LOL

I used to work with a lot of single mothers and I had the most respect for them, they worked their patooties off. So whatever your life situation is that causes you to "bite the bullet" and still work, please know you have my utmost (<- is that a word?) respect.

I'm sorry about the truck that hit you, but I give you big "kudos" for working inspite of how you feel. You should pat yourself on the back and flatten the tires on that truck!

Thanks for sharing and please post back here often when you feel like you need to "unload".
tk

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.


corin:

I like your description.

Thanks,
tk

dear tk,
i used to wait tables in my late teens and early twenties. it was hard work and alot of fun. i made some great friends and met interesting strangers. there is something so warm about feeding the hungry. tips are cool too!!
when i made the choices i made for myself, i also chose to end several friendships. two of them were heartbreaking. at the time i knew in my heart they would return one day. i was part of their problem and they mine. i worked on me and thought of them ever day. i missed them so much. cherrie and rhonda were in my heart if not in my reality.
one day the phone rang. it was cherrie. she was back in the u.s. for chemotherapy and wanted to know if i harbored any ill will toward her. she was forgiven the moment she chose to betray our friendship, i simply (and for the first time) removed myself to prevent further temptation. she had a major stroke two days after her first chemo. when she awoke she would not allow any one to touch her until they called me and i told her it was safe. tough love, compassion and an open mind gave me back not only my friend, but a new woman who had learned to trust (at last) one human. she chose me. i asked her why me one time. she said because i was the only person who ever told her to her behavior was unacceptable. she died about 10 months later. we packed years of fun in those 10 months. i was with her when she left her body. i miss her sometimes.
then the phone rang again one day after cherrie had been gone a few months. it was rhonda. delight of delights. my friend had come home to me. in her years away she learned the ways of being a true friend. she went thru the death of both her parents without a best friend to hold her. she said it was hard but she knew she had to learn how, so she did. i value her more than ever. and i don't dread seeing her or her calling. i look foreward to it. she is finding herself and allowing me the honor of being there to cheer her on.
my mom raised me with tough love mixed with compassion. strong boundaries infuse my life with stimulating gentle friends. this, for me, is the path to healing.
i too agree it is a wonderful planet where two humans can respectfully agree to disagree. bless the independant minds! without them change would never happen.
peace,
bluelakelady
very stimulating conversation on the aside. thank you so much.

dear tk,
i used to wait tables in my late teens and early twenties. it was hard work and alot of fun. i made some great friends and met interesting strangers. there is something so warm about feeding the hungry. tips are cool too!!
when i made the choices i made for myself, i also chose to end several friendships. two of them were heartbreaking. at the time i knew in my heart they would return one day. i was part of their problem and they mine. i worked on me and thought of them ever day. i missed them so much. cherrie and rhonda were in my heart if not in my reality.
one day the phone rang. it was cherrie. she was back in the u.s. for chemotherapy and wanted to know if i harbored any ill will toward her. she was forgiven the moment she chose to betray our friendship, i simply (and for the first time) removed myself to prevent further temptation. she had a major stroke two days after her first chemo. when she awoke she would not allow any one to touch her until they called me and i told her it was safe. tough love, compassion and an open mind gave me back not only my friend, but a new woman who had learned to trust (at last) one human. she chose me. i asked her why me one time. she said because i was the only person who ever told her to her behavior was unacceptable. she died about 10 months later. we packed years of fun in those 10 months. i was with her when she left her body. i miss her sometimes.
then the phone rang again one day after cherrie had been gone a few months. it was rhonda. delight of delights. my friend had come home to me. in her years away she learned the ways of being a true friend. she went thru the death of both her parents without a best friend to hold her. she said it was hard but she knew she had to learn how, so she did. i value her more than ever. and i don't dread seeing her or her calling. i look foreward to it. she is finding herself and allowing me the honor of being there to cheer her on.
my mom raised me with tough love mixed with compassion. strong boundaries infuse my life with stimulating gentle friends. this, for me, is the path to healing.
i too agree it is a wonderful planet where two humans can respectfully agree to disagree. bless the independant minds! without them change would never happen.
peace,
bluelakelady
very stimulating conversation on the aside. thank you so much.


The harshest words I ever said to my friend Karla when she was 68 pounds and her veins were popping nearly out of her little arms were when I grabbed her at work, held her against the vestibule wall and said to her: "I will not go to your funeral if you decide to kill yourself. Look at yourself! Look what you have done to yourself! I am not going to sit by and watch you kill yourself" Those were the harshest words I ever spoke to her. We hugged and after that I continued to coddle her.

I too am familiar with being raised with tough love, only without the compassion. That is why I choose to give compassion freely.

Now, I think we should go back to the subject of :

Describe Fibromyalgia , or other people wanting to post THEIR feelings will begin to think this thread is about tkgoodspirit and bluelakelady, and that is not what I intended when I started this thread.

Here's wishing you a good spirit,
tk

I apologize for monopolizing this thread. Please continue to post your description of FM. I am anxious to hear you describe Fibromyalgia.

Please accept my apologies.

tk

So, far your descriptions have been somewhat similar, from being run over by a truck, to being invisible, but I also am hearing that some of you feel like no one understands. You are not alone with that feeling, there are a lot of people on these boards who understand, so please share.

tk,
you're funny. thanks. i am off to pt. gonna see if i can't spy that truck driver on my way!
peace,
bluelakelady
ps a friend for life knows when to pin you to a wall. well done! i am sorry you only got the tough aspect of love. there is so much more, as you discovered when you left the home of your parents. bless your open mind.

hi all, as you might already know my story, im waiitng for mri!!!! its taking ages. im pretty sure its fibro i have!!! welll, this is how i feel. I dont know if i have fibro yet so its even harder to say how i feel to people. i call it my symptoms, aches and pains. i wake up in morning and feel so tired, i do have a young child but give me a lie in once a week and i still need more. i have achy head in morning, not a headache but a fuzzy ache feeling, i have aches in random parts, feeel like need good massage. i might feel real happy then realise i have a ache or tingle somewhere and then im reminded of it all and that its 17 months and i still dont know what it is. not knowing is worst part for me!! i cant rest till i have a label!!!! its that and the fatigue for me!!! also lack of sex drive!!!! im 23 too!!! love aprilxx

fm is having a constant charlie horse, and YOUR charlie lol

April, you are still waiting for an MRI? Why is it taking so long? Have you been told why? An MRI will not tell you if you have FM, but it will tell you if you have other things, like maybe a pinched nerve or something going on with your discs.

Thanks for your reply,
tk

im in uk, take forever here!!! so slow, waiting list! xx

fm is having a constant charlie horse, and YOUR charlie lol


That's a good one! :)

fm is having a constant charlie horse, and YOUR charlie lol

That has to be one of the best way's of putting it! hooray for you.

Other than what corin said, I feel so lethargic (spelling?) When I stand up I have to stretch out every muscle first before I can take the first step, because my muscles hurt so bad that I can't move them. It has gotten to the point when people ask me about the way I feel, I just say nerver mind, you wouldn't understand. I guess I am getting a bad attitude and tired of telling the same thing over and over again.

Bump up post.

aaronon: I respect and envy the fact that you are working. I know that must be extremely difficult especially when you feel exhausted and painful.

tk, it's extremely exhausting. I'm wore out and right now, I'm about to lose my mind over this pain that I'm in. I don''t take meds, and rarely see a doctor. My husband put his foot down years ago, about meds, and also, he doesn't believe there is such a thing as Fibromyalgia.

I had to quit my job after being there nine years. I waited tables, and simply loved serving people their breakfast, lunch or dinner. It was hard physical work, but after getting FM I found that as more time passed I couldn't keep up with my station or remember orders, which was frustrating for me, because I was good at my job, and I knew it was slipping away.

tk, I have a notebook, on my desk (when I can remember to get it out of the car) hehe.....that I used daily, including post it notes too. I have to have them, or I'd be really screwed up.

Since I don't know your entire situation, I'm sure you are working because you need to support yourself, or your family, which, I'm sure makes working with FM all the more frustrating. I hated quitting work, but I was lucky at the time, that my husband was working, and we could get by. But just to share a bit with you about how things change. My husband recently lost his job and I have more than just the Fibro going on with me, so even when I quit my job in 2003 I felt "okay" cuz my husband was working, but see how things change? Not too long ago I even sat here thinking about going back to my old job to see if I could just sit in a corner and shuffle papers just to get some kind of income coming in, but I have such severe back and hip damage
I can't even sit, unless they bought me a recliner! LOL


tk, I work because I was kicked off SSDI over 4 years ago. I wasn't about to stay home and depend on my hubby for things, having to ask for money etc. Ours is not your typical relationship in that we keep all our finances separate. (His choice). Recently he lost his job, his nice cushy job, with all the benefits...salaried position, health insurance, 401K. They hired those back the next day that wanted to be hired back, as hourly employees, 90 day temporary. What a shock that was to us all. He's still not recovered from it. You never know when something like that is going to happen. I have back damage, nerve damage, fibro, TMJ, arthritis, sjogren's syndrome, just to mention a few....and I'm just about done with this pain. Our GP is not one of those people that give out pain meds unless your dying. I really don't have the energy to start looking for someone else either.

I used to work with a lot of single mothers and I had the most respect for them, they worked their patooties off. So whatever your life situation is that causes you to "bite the bullet" and still work, please know you have my utmost (<- is that a word?) respect.

tk, thanks, but being a full time mom, is just as hard. I respect all women, it's not a easy life we have/had...along the way.

I'm sorry about the truck that hit you, but I give you big "kudos" for working inspite of how you feel. You should pat yourself on the back and flatten the tires on that truck!

Thanks for sharing and please post back here often when you feel like you need to "unload".
tk

thank you tk, I'm no hero, mostly Im just stubborn. That's why I work, I guess. I will say a prayer for everyone tonite that we all have a good pain free evening.

aaronon

thank you tk, I'm no hero, mostly Im just stubborn. That's why I work, I guess. I will say a prayer for everyone tonite that we all have a good pain free evening.

aaronon


Hi aaronon:

Thanks for sharing with me. I know how you feel about bringing in income. The last few months at my job I had gone downhill in my job performance so much, it just got the better of me. My coworkers and managers helped me so much, until I just couldn't take it any longer. I was a waitress, still am, we never die! LOL And I considered it my proffession although I was questioned by some of my guest that I waited on "didn't I ever want a real job"? I had to laugh and explain to them, that without us, who would bring them their dinner. :) I feel bad every day that I can't contribute to the household. My husband and I also have separate bank accounts. Of course mine has $20.00 in it now. Once things get settled down in my life a little bit, I plan on volunteering with an adult literacy program to teach adults to read.

As for stay at home moms, of course, I agree they work their patooties off also. Working single moms just steal my heart I guess cuz I worked with so many young women who's boyfriends, or ex husbands were either in jail, or non existant in their lives, and I admired their spirit. I don't know that I would be able to do it. Thank goodness I never had to find out.

The sicker I got, the less I worked, until one day, I talked with my husband about dropping down to fewer hours which would cause me to lose my insurance and go on his. Mine was free. We did this and all was going well for a decent amount of time. It was a little tight on the budget but we were doing okay. My husband worked offshore and made good money, until...this past September he lost his job after being there nine years. His own fault, he failed a drug screen. Sore topic between the two of us. I was in shock. I had been out of work since February 2003 and now we have no income. My biggest scare was losing my insurance, my doctors, my meds. All of which helped me sustain some sort of quality of life. He has found work, and I went on COBRA through his previous employer, but he makes in one month now, what he made in two weeks working offshore. So... the car, the house, blah blah blah, are all big issues now. We may be surrending the car, or filing chapter 7 if we have to. So I certainly know how things can change. I can remember when my husband and I were first married, we were so poor (this is my second husband) we were doing good to eat at McDonalds using a 2fer coupon. We lived in a rat infested house with a gas heater in only one room. But, I've done it before and I'll do it again if I have to. Sell everything I own and start over. After I divorced my first husband, I did exactly that. It hurts, but it doesn't kill you, and I'll do it again if I have to. I'll complain about it, but I'll do it. :)

So here's to hoping for better times, and that my disability is approved this time around, cuz, at the age of 46, after working since I was 15, I want it now before there isn't any left! Oh and since all of my family members have passed away long before they were eligible for social security, I figure, my family has saved them money.

Thanks for your good thoughts, we sure can all use them.

Hugs,
tk

It makes me feel like a 90 year old with all of the aches and pains. It's like I woke up and I hit 90. Like the last 50 years were just a dream. I'm really 90 and everyone sees a 40 year old. If i'm not burning, i'm throbbing or aching, in the moring cant get out of bed because of the stiffness. it's what old old age feels like i presume.

The toothache comparison is good. That is what I get in my knees and shins.
If you ever played tackle football or decided to workout in a gym and overduing the first day after laying around for years. Also the unabilty to concentrate, fatigue, sleeplessness and irritablity.

hi, i say i feels like having a bad flu 24/7 expecpt no fever. iam glad i found this and i am not alone. thanks

hi, welcome!!! love april

There was a time when I thought feeling old would feel like this...but I am now 52, and realizing that old DOESN'T feel like this...SICK feels like this! I haven't had a totally feel good day in a very long time. I have had a few partial days of energy and almost no pain...but very few. What does FMS feel like????Well, to me it is a continual feeling of lack of energy, or pain, or stiffness,fluish-ness, or a combination of any and all of those. It has, at times, made me sad and longing for the life I used to have. It has also shown me how much my husband and my children care for me. It has reminded me that others don't always understand what you are dealing with....it has made me more concious of my life and what I choose to do with it. Describing FMS...I wish I couldn't...I wish that I didn't have something that very little is known about. I can deal with the discomforts and pain of FMS...it is hard to deal with the doctors that you have to suffer through!
FMS in one word....UGH.