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Uninformed people!
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Uninformed people!

Is there anyone else out here that is just plain tired (literally) of everyone around you not understanding how you feel? That to get out of bed each day is a miracle, much less keep up with cooking, cleaning, errands, etc. Not to mention anyone with a job dealing with CFS! I just wish someone would tell me once in a while, you are doing great, so proud of you for not letting Fibro and CFS get you completely down!! I could stay in bed all day....
just needing to vent and I know on here, you will understand!!

Working on getting better and finding better ways to help me, just having a down day!
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32 Comments Post a Comment
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1621810_tn?1300122623
YES!!! I know EXACTLY what u mean!!! It's so horrible! I haven't been diagnosed with CFS, But I have looked into it, and am pretty positive that I have it! However, they quit the research on it, due to funding...so therefore, they diagnose you with something else, like LUPUS, or GLUMERULOSCLEROSIS, ( which is b/c I have a kidney disease also ). But those diagnosis's don't cover the fatigue, dizzy spells, flu like symptoms, tiredness, weakness, etc.
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Avatar_f_tn
Nope, not me, I don't need understanding, or affirmation that I am doing a great job from anyone BUT MYSELF....as long as I know I am doing the best I can, I don't need anyone's opinion on me. I don't have to justify why I can't do things when I am just not up to it or physically can't, nor do I need to explain my medical issues with anyone I don't want explain them too.

I know I am doing the best I can, so that is all that matters to me....
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1567353_tn?1358880455
It really makes me mad 'cause I'm 17, so doctors take me even less seriously. They don't listen to me, and mostly disregard everything I say because I'm a kid and can't know what I'm talking about. And they think I'm being dramatic and exaggerating my pain, when I'm not!
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681148_tn?1285160820
Yes, I get tired of hearing people who are uninformed give me advice.  It's like they think they know what will solve the problem when they haven't got the first clue.
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329994_tn?1301666848
Thanks to all the responses. I was just venting because I do get tired of hearing, rest, get more sleep, eat right, blah,blah, blah....don't they think I research as much as I can. Anyway, to laurandavid and furballsmom - thanks for the backing - just that makes me feel better!  and laurandavid - I hope you get a diagnosis soon!
to Arsia - yes, I would imagine at 17 it would be even harder, they probably don't listen at all and I am sorry you are so young and dealing with this. It's hard enough at my age but I do believe easier than it would be at 17.
To totie - good for your self esteem and confidence.
Thanks to everyone, it's just been a looong week and it helped to vent a little to women who understand! I hope today is a good day for everyone :)
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Avatar_f_tn
was diagnosed back in jun or so of 09. I also have hep c, and osteo. really didnt want to think i had fibro, jus thought getting older and alot of hard physical jobs all my life, but startin to think yeah they mite b rite! had to look up fibro flares, cuz here lately, OMG!!!! sweats, pain like no other, tired all the damn time, bad! it even hurts to touch me! this crap is really messed up!!! knees hurt so bad hard to walk, hips, hands, back, neck...**** u name it it hurts!!!! only 48 and feel 80 some days!!!!
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681148_tn?1285160820
That's why we have this forum.  We need the support of each other.  And, this is a great resource to get information to use when we visit our doctors.  Sometimes we really have to vent, too.  Especially when we know other people who are having similar experiences who can relate to what one another is dealing with.
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Avatar_f_tn
Oh YESSSS!!!  I get very tired of this also - especially when it comes from the people who are closest to us and who are the ones who SHOULD understand and support us!
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681148_tn?1285160820
Absolutely.  That's what I was thinking when I posted that last comment.  You hit the nail on the head.  It's definitely hardest when it comes from the people closest to us.
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329994_tn?1301666848
You are all so right. That hurts me too, it's usually my 2 closest friends. I also have an issue going on with my intestines, a serious one, and I get all kinds of unsolicited advice on that too, Eat more fiber, eat this, do that.....it's the same and I just want to scream sometimes, although I know they mean well.

Lilbits48, sorry you are going through this but we do understand so come on anytime you need to talk or vent,or ask questions. I am 53 and also feel so old somedays!!
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1623704_tn?1300456345
I have a few friends that have fibro.. but, no where near as bad as I have it. They think I am out of my mind. They say.. Oh, I have Fibro too.. and can go about the day as normal as anyone else. I wonder, do they really, or is there levels?! I have CFS so bad, my husband does not want to here anything.. what he does not here, he does not have to deal with, and is not real. So, I just do what I can and don't worry anymore about him.. I had always kept my pain to myself. I dont care anymore.. let him know how I feel.. It all comes down too our selves. We need to worry about us.. know one knows what we go through except someone that is in our shoes. Staying in touch with others that suffer CFS, fibro pain ect is about the best we can do. We understand each other. Let us draw streagth from that. I am 50. I used to love to dance, and I mean dance.. I miss it so much.
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329994_tn?1301666848
I too have CFS and it's bad. I could literally stay in bed every day, all day. But I get up and do stuff so then of course, instead of people thinking, wow, look how good she does with her Fibro, CFS, heart problems, peripheral neuropathy....no, they think I am up, so I must be ok. It's a hard line to deal with....I am sorry your husband does not understand and I hope that gets better. Print him out articles from the internet if you can. That helped my husband alot. Does he totally understand, no. But he has an idea and communication is the best for you two. He needs to understand how you feel.  
I love to line dance and we did it all the time. I recently had knee surgery so not dancing at all, but plan to try and do a bit at a time soon. A little bit of exercise helps but don't overdo it. If you do, just plan on the next day to do nothing but rest up!!
Take care!
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1623704_tn?1300456345
Well, I had the great idea also, and printed of a two page artical about Fm. he looked at it, for about 2 min.. didnt even turn the second page and just put it down. I sat back and watched.. to see what he had to say about anything. I asked him about something in the second page, knowing full well he didnt even bother to read it.. He said, I didnt see anything about that..Boy was I upset.. I keep things inside.. so I calmly said, did you even bother to read the whole thing.. that was on the second page. so, he took another moment to skim over it, then said yes.. I read it. Its not like he does not care, I know he does.. but, I think it hurts him, to know what is hurting me.. ignorance in this case is his best friend :-) I tried to line dance.. I cant get it. lol. We like to dance to jazz. Kind of like swing dancing. Hubby is very good on his feet!! All the ladies want to take turns dancing with him.. I just ordered a total gym, and getting a treadmill. I have a gym membership, but most of the time, i cant get away from the bathroom long enough to get out the door. Once I am there, I spend most my time working if I can make it back around the track, to the rest room!!! I have learned my limits.. the hard way.
take care..
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483733_tn?1326802046
Colleen, so sorry you were having a down day.  Promise I will call you in the next couple of days and let you vent to your heart's content.

laurandavid, fibromyalgia is often a disease that is diagnosed after all others have been ruled out and can often go hand in hand with other chronic pain issues like Lupus, RA, Osteoarthritis, etc.  Find another rheumatologist who will get you a definitive diagnosis on everything.  If you do have lupus the symptoms are very similar and you do get flu like symptoms, fatigue, muscle pain, etc. too but it can affect other body areas.  It must be treated.  While fibro hurts like h$ll it doesn't affect our other organs so many doctors disregard it.

I was so fortunate to go for about a month feeling good but am being hit bad right now.  It is amazing how I forget what a flare feels like when I am having a good day.  I luckily don't have CFS and really feel for those that have even more fatigue than what goes with fibro.  Hope everyone is having a better day today.
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329994_tn?1301666848
Mrsjt50, I think too that our men are fixers and when faced with something they can't fix, like Fibro, they want to ignore it. Hang in there with him, hopefully, you will have some better days and can get back into the dancing, even if only for a bit at a time. You seem to be doing the right things, with getting exercise.  I try to walk and the line dance. and I spend a day recovering but it is worth it!

Trudie,
I would love to talk to you. I will be in and out with doctor appts this week but more in than out, lol. So call when it works for you and we can vent to each other!! Sounds like you need it too. Yes, you do forget when it's a good day, don't you?

Thanks everyone, just reading the posts make me feel better!
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1611319_tn?1378621999
YOU ARE DOING A GREAT JOB!!!!  I know how difficult it is!! And yes having a full time job is ridiculous with all this pain! But even though I have never met you, I am proud of you!!!

Just Sayin'.....................-sass-
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773755_tn?1328123377
hey mate, long time - re original post: absolutely! all the time (because the symptoms ar wall the time!)
i'm needing less and less for others to understand, but it sure is frustrating when we have to explain it to the people it would advantage if they knew eg dr, bus driver, fellow citizens in public place wondering why you're sitting on the floor while waiting in a cue!
somehow we get by..! x x x
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329994_tn?1301666848
Sassy Sharon, thank you, those were kind words and I want to say the same!! It is hard but we are all doing a great job.
Acker - I am working on it too. I am glad you are at the point where you need less and less understanding.
In some respects, I probably worded my post wrong. I don't know how to explain it really but people expect more out of me than I am able to give and therefore, I wish they understood more? But am working on it too and everyone on here is very kind!
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681148_tn?1285160820
Yeah, that seems to be a common problem for people with these conditions.  Friends and family seem to expect more of us than is possible.  It would be wonderful if they could really understand.  I find myself avoiding certain situations because of this lack of understanding I experience.  I don't want to avoid the situations entirely all the time, but I find it necessary.
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Avatar_f_tn
Thanks hun.......sometimes I jus need to talk to someone! My daughter has fibro also, so she does understand, to some extent. I find that stress is a big trigger! I try to keep it at a minimum, but hell sometimes it is wat it is, and cant. My daughter is a big part of my stress, tryin to raise a 2 yr old by myself!!! Days I jus want to run screamin naked in the nite!!! lmao!
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1623704_tn?1300456345
Thanks for the reminder. And yes, that does sound like my husband. Hope all has a great friday and weekend. Reminder... Spring is almost here, warm weather!!!
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329994_tn?1301666848
I too, will avoid certain situations Furballsmom, because you just know how it will be, so it's better not to put yourself there. My husband is very good as husbands go, but sometimes I take a nap in the afternoon and I will stay there until he gets home, sohe will understand that it's hard for me to get up and cook a full meal, clean up, etc. I am tired. Lilbits, you have 2 daughters? a 2 year old and an older one, you said your daughter understands because she has fibro and then said you are raising a 2 year old by yourself, so I am confused.  I have 5 boys and let me tell you, there were days I wanted to just drive away - but of course, I love them so I didn't, but stress definitely gets to you.
Mrsjt50, hope you have a great weekend too. Spring....it would be so nice :)
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Avatar_f_tn
Yup, it pisses me off a lot. People can be so judgmental and critical when they haven't walked in your shoes. I despise others who bring me down to make themselves feel better. Young people (20-30YR Range) have it much worse I think..
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681148_tn?1285160820
Wow, you're so fortunate that your husband is so supportive, even if he doesn't completely understand what you're dealing with.  I know I'm fortunate that I live alone since I already know that I wouldn't be able to actually live with anyone else with these issues.  Still, there are non-domestic situations that I avoid that I wish I didn't have to avoid because people who I know just don't get it.
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329994_tn?1301666848
FurballsMom,
Yes, I am lucky. He understands the best he can. Unless you live it, you don't understand and if you are in a bad flare, it's just so much worse. Living alone maybe gives you the freedom to give in when you are just so worn out?? as compared to having to take care of others but then I also have the others to support me when they can. It's just plain hard!
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428506_tn?1296560999
I am extremely fortunate that my CFS/fibro are secondary to chronic infections, which are (to some extent) treatable.  I have been treating my condition for over 2.5 years.  I'm lucky to be working full time again, but it comes at a huge price of privately/secretly bearing the load of an invisible yet devastating illness.  My spouse is a huge source of support, but it is very difficult to always hide/cover up my condition at work.  It's even more stressful to know that even if I could open up to colleagues, most would not understand, as is the case with the general population.  

When my symptoms are flaring, I have no choice but to make excuses and duck out of work as much as possible to go home and rest.  I hate that despite my efforts to work as much as I can when I am physically able, I must still come across as lazy at times.  

Other than my spouse, the people around me either don't know, don't care, or don't "get it."  It is a heavy load to bear as a couple, and as the "bread winner" I'm lucky that so far I've been able to advance my career while still recovering.

My heart goes out to all of you, the symptoms of fibro/CFS have been life altering for me and the additional stress of not having a clear, well understood and respected diagnosis only poses further challenges.
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1611319_tn?1378621999
I don't even tell anyone about all the pain!!  No one really seems to care one way or the other.  It is like we bring them down or that we are just looking for attention!!  Like IF I wanted attention I could sing, and since I can't carry a tune in a bucket, that would get me plenty!!  And it is soo true, if you get up and get around, just making the best of it that you can, then we are suddenly "cured" or "not as bad as we think" .   Now we can be disregarded even more.  My husband is an awesome man and he deals with pain, but it is from injury and nerve damage caused by a tumor on a nerve.  Mine you can't see, or pinpoint where it came from so it is invisible.  So, he just doesn't get it.  I have no idea where it came from either but I diffentley know it is there.  
A girl I work with has multiple health issues like I do, she never complains, but has to make frequent doctor visits and er visits.  I hear the people talk about her being a hypochondriac or that she just has "good insurance" and wants to use it.  Poor thing!  If they only knew.  Why can't people have compassion without having first hand experience.  Anyway she had a mild stroke the other day while at work and they all thought.. well, here she goes again.  For Real!!!   My heart breaks!!  so when I go, I am not telling everyone!  But maybe that is why more people don't get it.  We go around hiding our symptoms and not addressing them, so most just think everything is okay.  I am simply tired of grinning and bearing it.  But will I change?  No.  Sorry for all the negativity, I am normally the "my cup is full" gal.   I too am the "bread winner" as my husband is unable to work.

Okay, enough!!  I want to support each of you by saying,  You are Important and I know that your pain is real. You are doing good, just by doing.  We can be here for each other.
I don't know if my pain is Fibro, Thyroid, Sjogren's are related to my spine and neck issues, I just know that you guys make it better!!             -sass-
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681148_tn?1285160820
OMG!  I've heard people in the past talk about people the way they talk about your co-worker.  People can sure be cold-hearted.  This really is heart breaking.  Here she doesn't even talk about what is going on with her and the co-workers talk so disrespectfully anyway.  I know people are uninformed, but there is no excuse for talking about someone the way they talk about her.  One would think they would stop talking even after having the stroke right there in front of them.  Some people are just plain cold.
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Avatar_f_tn
I posted b4, but damned if I know where it went!!! My daughter is 22, she has had migraines since middle school, then about 2-3 years ago they dx her with fibro. she has been on some kinda pain meds off n on for years. then wen they dx her with the fibro doc put her on norcos and soma! she is soooo addicted now! she has stole me blind, had to rescue my stuff from the pawn shop! have had her n rehab, hasnt worked! hate seeing her in her "soma comas" its painful to watch! she had played soccer since lil into high school, then tore her acl, sugery etc., so no more soccer. she was going to college, blew that off, wont hold down a job, had to kick her out! I am rasing my cousins lil boy, he's 2. have had him since he was 2 mos old. (drugs!!! damn drugs!!!) nobody wanted him, or could take him, so now I do. Its jus so hard sometimes!!! I the midst of all the crazy, was tryin to have a relationship, is there any "normal" guys out there?!?!?! holy crap he is more of a ***** than I am!!!!! grrrrrrrr jus one of those days!!!! thanks for listenin.........
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Avatar_f_tn
I am so empathetic to your situation....nobody around me really "gets" what I have except for my son.  My ex-husband left us two years after I got sick.  I have type 1 diabetes and lupus and thyroid issues as well as fibromyalgia.  I was a successful businesswoman and the breadwinner until I became disabled in 2002.  My ex never belived I was sick.  He's now remarried and a year after he got married his new shiny healthy younger wife got MS.  He's not dealing with that well either but he told my sone that I am lazy compared to the new wife and that if I just powered through my bad days things would be fine.  My son knows the truth, of course, but it's stuff like this that just makes my crazy.
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1611319_tn?1378621999
we could tell him some things to "power" thru!!!!  
Good Luck....-sass-
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1623704_tn?1300456345
Wow, sounds like your ex got what was coming to him!  I was a skinny thing when I met my husband, 6 years ago, I am now a size 14 and hating it. We got married in sep of 08. I got fm after an accident feb 09. He has been pretty understanding, as he knew how active I was before. He mostly gets angry at the doctors. As ivfrog put it to me, he cant fix me, so he doesnt want to know all that is going on with me. Thats ok. I am just thankful that he has stuck by my side. There are good guys out there. My 22 year old son comes and spends time with us. He is very helpful to me. He will cook meals and clean up. He is a sweetheart of a son. He has friends with FM, most of them are on some heavy drugs, he see's what pain can reduce some people too. His heart goes out to them also.
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