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The worst things people could say

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Posted 5/7/2009 3:39 AM (GMT 0)

I thought I once found a list on the internet of the worst things people could say to someone with FM (or anyone in chronic pain) and after a long time searching I can't find it.  It may have even been a topic on this forum.  Does anyone know of a site with an article on this topic?

I am sure we could come up with our own, if no one knows of a list!

I just "disclosed" my condition to my boss today.  He already made a comment about his own health and told me everyone gets older and more achy (I am only 47)!  All I could say was "it's not like that". 

I'd like to educate him without giving him a long article to read (and most I have found are long personal stories).   And let him know that some things are better left unsaid.

Rose

Posted 5/7/2009 3:55 AM (GMT 0)
Oh man, that goes right up there with suggestions of how to "make it all better/ favorite things people say to you to get over the pain" hahahahahaha!!! I am laughing now, but the last time my friend told me what I "should"be doing, I was furious. People think they know what you are going through, but it's like all diseases I guess, unless you walk a mile in my shoes..... and I can't walk anymore or stand for very long for that matter either.

You just have to resign yourself that a lot of people just don't get it and never will. My other malady is clinical depression. I have a very bad case and am on three different medications. I am very finely controlled and doing well, but if my meds get messed up for some reason, I am in serious trouble. I just love it when people hear of depression and say, Oh I've been depressed before. Not the same thing!!!!!! Or when they say, Oh I know just how you feel. I'm sorry they don't. And it's the same with the fibro.

Keep your chin up and vent your frustrations on here. I just did!!

Have a lpd and God bless.

Lindaloo
Posted 5/7/2009 4:41 AM (GMT 0)
Hi Rose!

I am so glad you started this topic because I too think we need a list of our own. And I'll bet we cover most everything that any other list had. shocked I rarely have people say anything because only family knows and a couple of friends and they were all nice about it. The only thing that bothers me too is when someone is in competition over who's pain is the worst. And the one person who does that to me is a friend who HAS fibro. Sheesh! If this were a race to see who had the most pain, I'd turn in my T-shirt and resign the marathon!

And about your boss...there are lots of things I can think of to say but I would have to agree with Linda...probably best not to say a thing. If you explain that it's a muscle disorder that causes pain to amplify then he will likely have something worse and will not have heard a word you said. Those types of folks are best left in the dark...lol IMHO...

CHutz
Posted 5/7/2009 1:01 PM (GMT 0)
Thanks for your replies, I decided overnight I will do 2 things (I am a glutton for pushishment apparently): 1) I will start a list and 2) I will write my own story. I did ask that people in my group be given sensitivity training on disabilities and FM, so maybe my HR person will let me help by providing my story.
I welcome ideas on what not to say!
My biggest peeve is what my soon to be ex-husband always said: You just need more exercise! Yeah, I tried that, down for even more time than usual.
Rose
Posted 5/7/2009 2:52 PM (GMT 0)

Lymekiller...NO ONE with fibro is 'lucky'.  If you have done any research on this disease, you will see that most of us had it at your age and just didn't know it.  Fibro is a relatively new to the medical profession and even though it is a real disease, we are passed over as being hypochondricas and chronic complainers.  I am 63 years old and can remember in grade school not being able to take gym because my legs hurt so bad.  At six years  old I was taken to the doctor with chest pain.  My back has been numb and tingly since I was twenty years old.

If you are so convinced you have Lyme...take a course of anti biotics and see if your symptoms go away.  None of us on this forum are 'Lucky".  If anyone is, you are if you have Lyme because you can be treated and have a chance to be cured.  The rest of us with fibro will suffer and just try to live normal happy lives with the cards we've been dealt.

Donna


Posted 5/7/2009 2:57 PM (GMT 0)
I like playing Ski-Bo with the cards I have been dealt... :)

Posted 5/7/2009 3:04 PM (GMT 0)
Good post, Donna.

You know, thinking back I was always less energetic than the other kids my age. I also remember feeling the burning sensation in my muscles in gym class, but when I said something to my dad about it, he just blew me off and said it was because I didn't exercise enough (he's been telling me this my entire life...lol) Thing is, the reason I didn't exercise as much is because it hurt! So maybe I really wasn't a homebody bookworm type of child because I was lazy (which is what everyone told me I was..)..maybe I was just having symptoms already.

So, yeah. That would put the beginning of my symptoms at about 6 or 7 years old. Definitely NOT a "lucky" thing!

The only way I could ever say I am "lucky" to have Fibro is that it turns out I don't have M.S. The Dr's originally thought that I did, and that was an absolutely terrifying thing for me. Thankfully it's not M.S. so....I guess in that way I am lucky.
Posted 5/7/2009 3:12 PM (GMT 0)

Good point, Danielle...yes I guess we are lucky we don't have MS or something else more serious.  There are things to be thankful for!

Jokat...I prefer to play 52 card pick up.  Not by choice but that's what usually happens when I shuffle.  We have three sets of card with only 51 cards in them...I must lose one somewhere when I am allowed to touch them!

Huggies

Donna

Posted 5/7/2009 3:16 PM (GMT 0)
The problem with 52 card pick up is that in order to pick them up, you have to bend over. Ouch!!! I way prefer to play "52 card I drop them YOU pick them up". Much easier on the fibro bod.
Posted 5/7/2009 3:21 PM (GMT 0)
I certainly feel lucky that I don't have MS, as that is what I had feared. I also feel lucky that I can work with fibro; many cannot. I could not do it if I had to go to the office everyday.
So, in some ways I am lucky, but not because I have fibro and not lyme...

And to add to the early Dx topic, I was only diagnosed 2 years ago with fibro, but 5 years ago with chronic myofascial pain and TMJ. If I look back I had many childhood issues with pain, but no adult ever took them seriously. I heard that I was having "growing pains" a lot. My own opinion is that many people actually have it or "get" it very young, but it is not recognized for what it is.
Just my 2 cents.
Another line: "just get some rest and you'll feel better". Well, yes, temporarily, but it won't make this go away!
R
Posted 5/7/2009 3:22 PM (GMT 0)
I'm not feeling so lucky myself.  I can only trace my fibro pain back about 10 years or so (I'm 40), but it has been a long ten years.  Before that, I've dealt with lots of other chronic illnesses, starting with my first kidney stone at 15. 

 

Like Danielle, I'm grateful that none of my health problems are terminal, but if I had a choice I would chuck the whole lot. :-)

 

My sixteen year old daughter often complains of fibro-like pain, but she is a dancer, which may contribute to some of it (they kind of abuse their bodies, imho), and she has severe scoliosis (had to wear a brace for a year), so only time will tell.  I worry about the whole possible genetic connection, but at least I'm aware of it, and now the medical community is catching up with it.  If she does have/develop it (God forbid), at least she should be able to get better treatment than some of you who developed it at such a young age years ago.  What a difficult thing to live with back when it was still "all in your head."

 

By the way, Jokat, I actually prefer UNO myself.  smilewinkgrin

 

Hugs - Austen

Posted 5/7/2009 3:27 PM (GMT 0)
Oh, I definitely would chuck the whole lot, too!!

I don't think any of us should feel like we have to ignore or down play our Fibro "just because" we don't have something more serious such as M.S. I also don't think that the fact that we don't have M.S. or something means that we are lucky! I just meant that, for me, at the very beginning of my Fibro journey, everybody was telling me it was probably M.S. (I have lesions on my brain) So I went a good while thinking I did in fact have M.S. and had gotten myself all worked up about it, then started reading about it, then started looking into ways to treat it, then started resigning myself to the fact that I had M.S. and I was just going to have to deal with that. I went through the whole process, you know? So, when I had some more tests done by a Neuro and he said-nope! definitely NOT M.S. it was a HUGE relief.

Nobody is lucky to have Fibro. I just always try to find silver linings in things, and the not having M.S. thing is one thing I try to remind myself of!
Posted 5/7/2009 3:33 PM (GMT 0)
I will not be held responsible for what I do to the next person that "think" they know what I need to do to feel better. Since I have been on the vit D and have a little more energy and motivation I have been pushing myself to the limit everyday and it hasn't helped the pain one bit when the weather is changing or for whatever reason the pain is worse.

 

I know I wouldn't have understood fibro before I got it. There is too much to it for anyone to understand that doesn't have it. I try to let advice go in one ear and out the other, ignorance is bliss. I have tried telling people that my body feels like I have worked out all day with weights and every muscle in my body hurts from it but it doesn't go away in a couple of days like their's would if they worked out way too much.

 

luv and hugs

Marlee

Posted 5/7/2009 3:48 PM (GMT 0)

Oh..this topic is so interesting.  Danielle...when I went to the Rheumy two years ago with all these symptoms that had gotten so much worse over the years I tried to convince him that I had MS and they missed something in all the testing.  He told me that if I didn't have it when they tested me at 40 and then again at 55 I DID NOT HAVE IT and wouldn't even do another ANA.  He told me MS manifests at an early age and that's why it is called a 'young persons disease'.  What he DID say however, as he treats many with MS, that fibro pain, in many instances,  is worse than MS pain.  So he was very understanding and didn't blow me off like many docs had done in the past.

Rose, my darling...so sorry to take over your post but glad you did it!  I don't care if you are 47 or 102...I know you hurt and am proud of you that you can work and get through it with a positive attitude.  Kudo's!

Huggies

Donna

Posted 5/7/2009 3:56 PM (GMT 0)
Thanks Marlee, I needed that kind of advice, I think. For some reason I am driven to make others understand me (and not just the fibro), it's probably a psychological issue! I know, in my head, that it doesn't matter what people think, but my heart says otherwise.
And face it, it really does matter what my boss thinks because he holds the fate of my job in his hands, more or less. We just went through 2 very large down-sizings (read: layoffs) and I still have my job. There will be at least one more round this year. I need for him to understand that yes, I can still work, but also please understand it is a daily struggle, and I need him to give me a little leeway. I work extra hard on the days that I can. I think he knows it deep down but is getting pressure from his new boss, who is a total (I can't use the word here). Ever meet a female executive who acts like and thinks like a male executive? Not a pleasant experience. Sorry, off topic.
Rose
Posted 5/7/2009 4:00 PM (GMT 0)
Donna-Thanks and hugs! Taking over my post is really very interesting for me, it brought out a lot of different issues people with FM have had with others, be they doctors, friends, or others. You don't have to apologize!
Rose
Posted 5/7/2009 4:35 PM (GMT 0)

Fibro is a very painful condition and I definitely am not lucky that I have it.  I'm not lucky that I have any of the illnesses I have.  I just do my best to work around it to do things I really want to do.  Can't do them all, but I give it a good try. 

I stopped trying to get people to understand this illness.  It's impossible!  I used to try and I was just beating my head against a brick wall.  So, I just do my own thing.  If people don't like it, too bad.

Donna, I think I know where that extra card is...how about up your sleeve?  nono

Oh, and Marlee, I have something that will help you!  devil devil

Sherrine

Posted 5/7/2009 7:02 PM (GMT 0)
If it is a hammer to knock me out til this flare passes I would let you have at it Sherrine, not an offer you will get often. If your going to tell me to exercise or pop pain pills I'll be the one doing the kabonging. devil

 

In the beginning Rose I thought I had to try to make everyone understand what I was feeling. Now I realize that even what we fibromites feel is different for everyone so it is a personal experience. My son and DIL has a woman on their fire department with fibro and she fought fires up til a year ago and now she works in the office. If they compare me to her their not getting the true picture cause I sure couldn't have fought fires even 10 yrs ago.

 

I'm sure my 57 yr old cousin and 66 yr old neighbor would gladly exchange their cancer for fibro and I am thankful that I don't have a terminal disease but I sure don't feel lucky to have fibro.

 

luv and hugs

Marlee

Posted 5/7/2009 7:20 PM (GMT 0)
Wow - the most unlucky thing is that it seems like people are saying ignorant things to you folks. I'm the minister of a 300-member church and neither my spouse, family, nor anyone at work has ever said anything negative to me. When they hear what it is most people say "oh no!" And everyone wishes me well and prays for me.

Not about bragging or anything...just saying that whoever is saying the negative/ignorant things is not necessarily all that common - and they really need to be set right. Or for some reason, family members can't handle you being sick and are in denial.
Posted 6/4/2009 1:53 AM (GMT 0)
well, my boss once said to me "You just need to lose some weight and eat healthy and your problems will go away."
Posted 6/4/2009 4:42 AM (GMT 0)

The fog is the worst.  It is easier to explain muscle disorder.  My hubby was forever saying, "I just told you that!" before I explained the fog.  Now we have a running joke - whenever I have trouble thinking, I just shrug and say "fog" and everyone laughs. 

I tend to keep quiet most of the time about the pain.  But those who are around me a lot can tell when I am hurting.  When we walked at the grand canyon, I was way way behind the others, just trudging at the best of my ability.  I couldn't go faster if I tried and hubby stayed with me.  That night I took 3 muscle relaxers, a benadryl and a half a tramadol and hallucinated that the smoke detector was floating around on the wall.  I thought someone was spying on me until I figured it was the smoke detector, which should have been stationary.  When people experience things like that with me, I hope they can tell that this is real.

Donna, you said you have been exercising for three years and have not gotten better.  Do you think that you would have gotten worse if you had not exercised?  I am trying to walk every night.  Last night I started hurting really bad before we got back home and then when we got closer I stopped hurting again.  It was really weird.  I was hoping to do Disneyland in November without a wheelchair and am not sure if that is a realistic goal when I cannot walk half a mile without pain.

Sue

Posted 2/27/2012 3:20 PM (GMT 0)
I have Fibromyalgia and if I hear one more person say....

But you do not look sick.

Everybody gets tired.

If you'd get out more.

If you'd get more exercise.

We all get more aches and pains as we get older.

I think I have that, too – I'm always tired.

My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

If you got more sleep, you'd feel better.

I read about this new product that cures fibromyalgia.

At least it's not fatal.

You just need to lose some weight and eat healthy.

It's all in your head.

Or offer me any unsolicited medical advice whatsoever. ( @#$%!*# *$ $&#^ .........EDIT)


My response,,,,,,,,
“You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals, and your adding to the pain.” Enough said.



I think that should be a t-shirt to raise money for research, or bring awareness to people who say those sayings.

Really how many of us have heard them sayings? How many times have we tried to do things we use to do but find it imposable to now do them. How often have we looked for treatments ourselves ? I have been threw acupuncture, herbal meds, massage therapy. hot baths, psychiatrists, chiropractor, and the list goes on and on. I even had a doctor leave me in the waiting room, then have a nurse tell me he did not want to see me anymore. Now that is a tough one. I did move on to a much better doctor who does work with me. But I just do the best I can. I know I kind of got off the topic. So have a good day. Westpur


Ps. I am sure glad I did not have to type all that up. Thanks to Dragon Naturally Speaking Software. (voice recognition software which allows you to dictate to your computer with headset).
Posted 2/27/2012 5:41 PM (GMT 0)
I know ! It sucks !

People just have NO FREAKING CLUE !

You people here have a 100 X's greater idea about what FM is like, than even a Dr..... which is probably why most of us are here to begin with.

Of course, with your boss, it might not be such a good idea to tell him, he has less clue than your pet chiwawa..... but I'm sure you would like to !

I think I'd be tempted to ask him.... "You ever had brain cancer" ? No ? Okay then, would you go around pretending to know what that's like, or try to give your own personal advice about how to cure it" ? Okay. I didn't think so.

Urggggg....

Freaking stupid human nature :( So I guess only people without FM no how to treat it ? Whatever.

Fish

Posted 2/27/2012 7:34 PM (GMT 0)
How about, "I had that once, but then I got off my butt and started exercising /eating better / having a better attitude / taking this great formula that I'm now selling - and it just went away!"

Debbie
Posted 2/28/2012 3:25 AM (GMT 0)
There is a Lupus site that covers this exact topic. I don't know if I'm allowed to post the name of it.

Ever heard of the Spoon theory? Google that, the site should appear.
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