Feel like no one believes you?

Ever feel like people believe it's all in your head or you're playing it up? I get more comments when I tell people I have fibro like "My sister has that, it's terrible" than I do negative ones but the few comments or underlying attitudes hit me hard. I've heard comments from family, friends, and even health care providers that bite (most of them didn't know I was listening).

I've deceided people need to be educated. No one really knows how you feel until they've lived it themselves. That's why these support groups really help. So we need to help people understand.

My brother-in-law always thought my neice who has fibro was just a whiner. Recently he had the flu and was in the emergency room complaining of pain all over, weakness, and pain even when breathing. His doctor said it was just from the flu. I pointed out that people with fibro feel that way every day of their lives. My sister said he really had a new appreciation for my neice (and me). Whenever someone describes a virus their suffering with, if it is anything like fibro I quietly comment that's what fibro feels like every day.

Our health care providers need to be educated equally as much. They learn from experience. Everything their patients say affects their understanding of your condition and becomes part of the advice they give others (I know because I am a health care provider).

Don't just tell them you have pain and fatigue or I hurt everywhere. Describe it. Here are some ways I've described it:

*Who turned up the gravity and could you ask them to turn it back down

*Fatigue feels different than tiredness. It feels like trying to run in a swimming pool. Every move takes so much effort

*I hurt everywhere, kind of like restless legs all over my body

*I feel like every individual muscle fiber is spasming on it's own and I can't make it stop (like tiny little muscle cramps everywhere)

*My muscles tighten up when they stay in one position for any length of time, then trying to straighten them (stretch them out) the pain is excruciating.

*The pain mounts really fast in the muscles I use to hold myself in one position much faster than the muscles I'm exercising. (if this is true for you, definitely use this one with your Physical Therapist otherwise they don't understand why you hurt there when that's not the muscle you're working on)

If you are anything like me, sometimes it can look like you are faking it. I can be wiped out and achy one minute then look fine the next just to be miserable again moments later. I've discovered, just like people with ADHD, when you are interested in something there is a chemical reaction in the brain that helps you focus. So, when I'm focused I can shut out the pain and fatigue signals for a little while. As soon as I lose my focus it washes back over me again. Unfortunately I can't seem to do that consciously and it is only short lived. But people need to understand that's what's going on, we're not faking it we are shutting it out for short periods.

If you have any comments you use to help people understand you, please share them.

Comments

Mindyp's picture

I just recently started feeling not myself. I have always had a lot of fatigue. My doctor thinks there is nothing wrong with me. My husband will touch me & I will tell him that it hurts but he doesn't believe me.....I have not been diagnosed with fibromyalgia but as I get older I really think that I have something but just cannot put my finger on it. Recently is has been muscle spasms. I am really glad that you posted this on here & I would like to talk more with you in the future.

Thanks,

Mindy

fibro-relief-quest's picture

Mindy,
Fibromyalgia is not really diagnosed. They have to eliminate all other possibilities then see if you have the pain sensitive pressure points so sometimes it takes a long time to get it identified. Ask around and find a doctor who understands fibromylagia. Doctors who don't understand it will tell you to see a councelor, because they don't know what else to say. The more I study the more convinced I am that fibromyalgia is affected by problems with digestion. Most medical doctors arn't trained in nutrition and it's effect on pain and energy. There are some doctors however that are very knowledgable about it, you just need to search for them.

By the way, I get very frustrated with having to ask my family not to grab me or my husband to move his arm when it's around me because the muscle pain from that pressure hurts. They have a hard time believing me because it feels like such little pressure to them but the feeling is magnified for me.

Hang in there!

Debbie

Garth's picture

It is also important to not just blindly accept Fibromyalgia as a diagnosis. I made that mistake several years ago and sadly once you do that, it's an excuse for doctors to stop looking at what really is going on. Since I am now on medical disability and my bleep bleep short term disability insurance has decided that FMS doesn't count, I got doctors to start looking again and we have found my thyroid numbers are jumping around badly, I have now tested positive for Hashimotos Disease, and now they just found out that my Pituitary Gland isn't working either. So, the next step is to look for a tumor and then I'm not sure where we go but the point of my post is "don't give up on looking for legitimate other physiological reasons for your condition!" And, even if it is FMS, don't allow ANYONE to talk you into it's in your head. Good luck to you.

fibro-relief-quest's picture

Good point. I'm pretty sure I do have fibromyalgia but have been recently finding other health problems as well. For a lot of people it seems fibromyalgia is a secondary diagnosis (or possibly all)- symptoms caused by a deeper physical conditon.

chronic pain suffer's picture

yep i always feel like no one believes me and think its all in my head and i have been told that to my my mother in law and my sister in law that its all in my head when its not

i suffer with chronic pain i am going to a pain management doctor

Connie Pye's picture

Being recently diagnosed with Fibromyalgia I also get really frustrated when people doen't believe how much even the slightest touch can put me in so much pain or they don't understand why I am so tired and can't do this and that. I am very thankful for a few family and friends who have looked up fibromyalgia so they can find out about what I am going through. A few have even suggested sites for me to look up. Gotta love them. They are true friends. There are a few who have made very mean comments and I have asked them if they know anything about fibromyalgia and of course it is a no and I then tell them to find out what it is before they open their mouths and I tell them I wouldn't wish fibromyalgia on my worst enemy. And that is so true. Why would you want anyone to have to live like this. I wish I weren't.

Noclue2011's picture

I as well been diagnosed with fibromyalgia,well that s one of the diagnosis.they exclude some possible illnesses by making u do *some tests,and ater is pretty easy to say u got fibromyalgia ,you gonna live with that all life,sorry for ya. As i said ,am in the same spot,i feel like living a terrible life,and know what is pain,and know that fibromyalgia can affect u in even more ways than just giving u physical pains; affects your life style,your mood,etc. And yes it is very annoying seeing how people around act,but they cannot understand unless they in same spot as u are.and more annoying is most of people aren t even bothered of trying to understand,some try to understand,but its impossible to fully do.We cant expect them to understand something they cant. I have been to many doctors in past years,and i got to learn. Also fibromyalgia is a similar thing to musculo squeletiq ,its muscle atrophy and the need of supplying your bones,so you wont just sink. As in fibro,in musculo sq exercises help pretty much,even if its painful to do,cuz u are too tired and pain,must be done,cuz its a benefit. I wanna ask what kind of *treatment*( as there s no real treatment yet for fibro found)did the doctors give u,pills,and what advices. And as well, what other symptoms do you have besides the fibro ones?
"For a lot of people it seems fibromyalgia is a secondary diagnosis (or possibly all)- symptoms caused by a deeper physical conditon." That is true, and i more likely think,all,not just some,there is something more about this.
Anyway i d be really interested in your other problems with health diagnosed,or symptomes.

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