Common misconceptions about fibromyalgia

I've chronic depression along with FMS. The FMS part make me unable to get up and get on with what I need to do. But the depression part make me want to overdose myself so I don't need to feel the pain anymore.

Thankfully, I am now seeking help from a mental health professional. At least now, the self harm part is more or less under control..

The main thing I've encountered is people thinking it's not a "real" illness. "Is that something they can even test for??" But I've encountered several of the ones Jasmine Grace posted. And before I was diagnosed, I know for a fact my husband thought I was just lazy. He'd come home and say, "What DID you get done today?" in the most condescending tone ever. And he's still learning NOT to do that.

Stephlynnette

That is it.. "condescending tone ".. that is the action that hurts me the most..
That and the disbelieving looks.

Those magnify everything.. and seem to be constant .. I have nothing to feel guilty about but after awhile it wears me down.

The only to-my-face comments has been re: taking pain meds

Stephlynnette, my husband was the same way before diagnosis. He wanted to believe me, but - - having a name really helped us both. I was afraid I was headed - well, not anywhere good. And he didn't know WHAT to think!

Jasmine Grace, the one that seems to impact me most often is people assuming I'm blowing things out of proportion. A pretty good friend always changes the subject when I'm telling her how I feel. I think part of the reason is that she doesn't want to believe something like this could happen to her....it feels like a "blame the victim" mentality. She'll suggest I ride a bike, or hike, or whatever it is she does. She seems to approach these activities only as a chore, something to cross off her list. She can't grasp that I would love to be in her shoes, but actually can't. (Heck, I can't even get down onto the floor...so I carry a reacher around. Maybe she thinks I bring it because it makes me feel fashionable?  Sexy?)

Then there's my son - but I won't get started on THAT subject! He understands zip, by choice. Hear no pain, see no pain, speak no pain ;(

At least we all have eachother here :)

Debbie

I'm hoping having a name for it will help him understand, for sure; I've actually not seen my husband a lot since diagnosis, only for about a week and a half before he left for New Zealand. He gets back Monday, back out Tuesday through Friday (overnight). Home for a week, back out for a week...it's wearing me out, for sure, being a single mom to four kids. :(

And I am SO glad I found this forum! Having people who understand what's happening really, really does help. I love you guys!!

Hello All,

I've only heard some of these responses so far but then again I just started telling my family and friends about two weeks ago. :/

I've even heard some of them before I was diagnosed. Thank God I have an awesome husband who has never second guessed me or my fibro. He even checks on me every day while at work. ;0)

I'm so glad I found you all! I look forward to reading your posts daily....as long as my body can handle it. Btw...feeling better after 4 bad fibro days in a row!! ;0)

XOXO

In my last job, a university job, I purposely only told a few people. I didn't want accomodations, not that any could be given, anyway. Since I worked on my own and set my schedule, I could usually manage to leave campus if something had to be dealt with.

So, if you were a closer friend rather than just a colleague, I would tell you.

One woman had RA and diabetes. She was always on the lookout for ways to help me, if I seemed to be struggling. For instance, if we were walking to a meeting, she would take my computer bag. If I were moving something, she rounded up kids to help. Any lighting stuff we were doing, she would take-over. Despite her chronic pain, she is very tall and sturdy, and so the same movements that would overwhelm me were within her range of ability. I was the organizer, and largely became the public face of our area, in meetings. Nice trade off.

Another woman was fairly healthy, but also fairly private. She did not like to discuss it. I do not think she was in disbelief, really, but merely didn't know how to deal so chose not try. At first, it bothered me. She was supportive, just really didn't want to know the details.

People make sense of things by their own experience. How can they understand? It's not evil, or mean, or clueless. It's just human nature. We gotta experience things to understand them.

When people say "IS there anything you can take for that?"-well, in their experience, medicine can rise to the challenge of solving the medical problem. Cough=syrup.. headache=aspirin. When they say,"Wow, I get tired too, after a long day," they are trying to emphathize with you. Or, "Boy, I sure do ache, as I get older." They are trying, in their way, to understand. When they say, "Why don't you get a little exercise, or eat right, or whatever?", they are simply mirroring the basic self-help principles that are awash in our culture.

I guess what I am trying to say, in my long-winded way, is that people usually mean well, but they do not have the tools to understand. Only the truly unhappy or not confident ones will make it about your character.

My boyfriend is training for a bike tour in July. He is mostly supportive, but occasionally says or does stupid things, as do we all. Anyway, one night we were sitting on the couch, and he was moaning about his knee and hip. I said "Babe, I really truly understand. Have you taken a painkiller? Do you want me to rub some icyhot into it" Heat? Ice?" A beat. Then, I said, "You know, imagine if this never went away." HE said "I have been thinking about that recently. I think I understand it a little better." Victory!!!!!!

6 weeks out of the classroom, and yet I can't stop lecturing.

Well, think about it. (I just re-read this. It was not meant to be snappy..... more as a genuine question. Hate the internet at times, because words without tone are created in the mind of the reader)

I hurt today. Why do we say that statement? We don't think someone else can do something about it, really. We state our current status, we want sympathy, we want someone to understand. And they are trying to, to the best of their abilities. It really is only a problem when the response demeans the condition, or links our worth to our physical state. "It's in your head" or even "You are just lazy" are demeaning statements. The people who make those statements I steer clear of, because those are hurtful. But even "Have you tried eating better?" is a legitimate response, from their point of view. "Have you tried to exercise daily?" is trying to be helpful.

Sure, it's judgmental and kind of shallow, but ultimately well-meaning.

Post Edited (Myself 09) : 6/19/2013 3:27:11 PM (GMT-6)

Today one of my flatmates asked me how I was feeling, and I automatically said, "okay, thanks". She asked, 'no, how are you really feeling?" This is where I made the mistake of telling her my current symptoms. She responded by saying that if I tried not to think about the symptoms, they might go away. I told her the symptoms are always there whether I think about them or not. I'm not sure if she believed me though. When I asked her if she thought I had a psychosomatic illness (I had to define what that was to her), she admitted that she thought that was my problem. I don't know why it still upsets me so much when I've heard that response so many times that I should be used to it by now... I know she actually does care about me, so that makes me feel a little better. But it doesn't make up for her disbelief of the fact that I can't actually eradicate the symptoms through the power of my mind.

By the way, she is one of those people that I have certainly talked to about FMS enough for her to understand by now that it's a real physical problem.

Awaiting the day that there is a proper diagnostic test and clear definition of the condition... I noticed that it's not listed by the National Institute of Neurological Disorders. Right now I just want acknowledgement!

Jasmine, that exact scenario has happened to me SO many times, and it always makes me absolutely livid, and of course, hurt. I guess it's because I honestly believe I WOULD believe someone, whether or not I'd experienced it....I mean, if it was someone I knew fairly well. There's so much we don't know in this world --

So why is an invisible, mysterious, but real affliction so far-fetched? I just don't get it. But, as my daughters would say, "it is what it is." :(

I'm sorry you got this reaction from your flatmate. Just when you thought she got it....sigh.

Debbie

To anyone who doesn’t have fibromyalgia:
I just wanted to say that the tips you generally read online for dealing with fibromyalgia… are not necessarily related to the cause of the fibromyalgia.

I was living a healthy lifestyle before I got fibromyalgia. When I got FMS, my lifestyle deteriorated – because it was so hard to do anything. So now I have to work really hard just to have a healthy lifestyle.

Before the FMS, I always slept from 9:30-6:30 every night. I did regular exercise in the fresh air and sunshine. I ate a balanced diet of fresh fruits and vegetables, grains and animal products. My family and I only ate junk food about three times a year. I took a multivitamin and fish oil capsule daily. I always drank plenty of water and I sometimes had fresh home-made citrus juice – no soda or drinks with additives. I was involved in the creative arts and I did well in school. I thought positively most of the time – in fact, I was often more positive than my [healthy] peers. I had a healthy BMI.

Then I suddenly became sick. Then it was hard to do anything. I hurt all over and was exhausted. I tried to get up and do things but I couldn’t. The pain continually woke me up at night, forcing me to sleep during the day to make up for it, so my sleep cycles became disrupted. I became even more tired and my brain often struggled to keep up with the conversations of people around me. I could no longer read a novel or watch a movie. I stopped exercising because it hurt too much to take even one step. I no longer ensured that I ate very healthy food because I didn’t feel up to preparing my own food.

I need to make lifestyle changes because the fibromyalgia changed my lifestyle from being healthy to being unhealthy. An unhealthy lifestyle did not cause my fibromyalgia; my lifestyle was healthy before the fibromyalgia. It only became unhealthy because of the fibromyalgia and my response to it!
I now have to make a concerted effort in order to eat a healthy diet, get enough restorative sleep and exercise. It’s hard to do if you’re in pain. But I have done it and the doctors say that they can see that I’m looking after my health well.

I need to learn to deal with stress and anxiety, which developed as a result of the fibromyalgia. I need to slow down and pace myself – but this is an adjustment to the FMS; most people without chronic pain/fatigue don’t have to do this to be healthy. I have to work hard to focus on positive thoughts – but only because it is so easy to have negative thoughts when in a lot of pain.

I volunteer in my local community. I visit the elderly people in several aged care homes and I am a health services volunteer. I am also a CADET. I do university studies in health sciences. I help my friends with their problems. I play the piano for free for other people’s enjoyment. I teach young children how to play the piano (for free).

POINT: I am not fat or lazy. I eat well, exercise, observe proper sleep hygiene unless I’m in extreme pain, think positive as much as the condition lets me and I contribute to society.