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Patients Fibromyalgia
Have you ever been told you were faking? Or that it's all "in your head"?
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fibrome
Good advisor
I've definitely had this happen to me but obviously not in the exact same context. I think people don't understand the full extent of what we experience with fibro because it's an "invisible disease." People can't immediately tell you've got a chronic illness when they look at you and they don't understand that it comes in flares or that some days are worse than others. I'm sorry this happened to you. If she were a true friend she would understand why you couldn't make it and would know that you'd make it up to her.
Blueboy
Good advisor
yes but I had other disabilities and was only diagnosed with fibromyalgia
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Emil Lachlan
dingalingas
I have never been accused of faking my pain, but have been told there is no such thing as fibromyalgia, which I have responded I don't care what you call it just make it go away.
curtaincall
@dingalingas Wow that's crazy that someone said that to you! Was that a doctor??
Courtney_J
Community managerGood advisor
Hello everyone,
Thank you for sharing in this discussion! If you haven't seen it already, we just published an article on this topic that you may find interesting. You can read it here: Why do some still believe that fibromyalgia is a psychosomatic illness?
What do you think? Have you ever been told that your fibro is "in your head"? Do others around you understand what you're going through?
@Littlelaurie1967 @Tnlisa06 @Cdionne1089 @Ilove2sew @gramybear @Dmf291 @Ridleyz224 @Diagnosed201991 @DWade2734 @Laurap617 @SCOTSGIRL @Dena56 @TMHeisz @Patrice21 @NerdyxNurse @Victoriana12 @Juliecat1
Feel free to share your thoughts with us here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity US
Cdionne1089
Good advisor
I have heard that way too much! I feel so hurt when others assume that I am exaggerating or faking because I look fine according to them. I don't get quality support at home or from my physicians. The fibromyalgia, along with multiple other conditions causing severe pain, cause constant pain both mentallyl and physically. The doctors acknowledge my injuries, conditions, and pain, but they don't want to do anything about it... Except shove meds down my throat to treat symptoms.😣🤢 Does anyone else struggle with similar issues? How do you cope on your worst days?
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Crystal Rose
CharlieE
Good advisor
@Cdionne1089 I totally agree! I feel like there's a problem in our medical system that they don't truly want to understand or find the root of problems, just prescribe, prescribe, prescribe, and hope that the symptoms go away. Being a woman on top of it all doesn't help because I feel like they don't take me seriously at all. It's really frustrating.
Cdionne1089
Good advisor
I'm completely discouraged and outraged with the healthcare system!! I just found out that the facility I've been going to since 2017 really failed to provide the care that I deserve! I've been terribly wronged by the providers that state insurance covers in this town. I was severely injured by a lumbar puncture that some careless ER doctor let an incompetent assistant perform on me. They put WRONG information in my medical record, and they didn't record hardly any of my concerns or anything else that I brought to their attention. They discriminated against me in multiple ways, as well. I won't go into too much detail, but I am definitely going to be changing facilities...
I am so upset because I'm now finding out that after all of this injustice I'm experiencing already, they are now telling me that I have Ovarian cancer... I'm still in shock. I'm so weak and so sick because of their careless mistakes and neglect. Now, I'm such a wreck that none of these state insurance providers care about or want to deal with me, so they pass me around like a hot potato. I just want to be heard, so that I can help start the desperately needed reform of the healthcare system. I wonder how many others are suffering just like I am because the doctor's only care about pay checks not patients. Even if it's too late for me, I NEED to make a change so this doesn't keep happening to so many others... I am rapidly getting worse and fear that they will fail to diagnose and treat me in time. I have have extensive medical care knowledge and experience, so I am prepared to put an organized plan on paper of the many things happening to patients causing harm and suffering with ways to change the services that are provided for a better outcome. The permanent damage this is causing to my health is showing that my life has been dramatically cut short because of this. If just one doctor would have taken me seriously and investigated my concerns further, the condition I'm in could have been prevented! Another big fuel source to the fire is Money💰 It's a terrible thing to be turned away and denied treatment because I can't afford it, and the state insurance won't cover it. I am disabled since I received that lumbar puncture in Dec. Of 2018, and I was just denied social security because of the healthcare providers' mistakes and neglect.
Has anyone else ever struggled with a similar issue or such careless healthcare workers?? I understand the many problems that they face, and I'm not against all healthcare providers. I have a passion for the medical field and have worked in it. There are good doctors out there, but I feel as though they are hard to find.
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Crystal Rose
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curtaincall
OK... so I have been told this this before... but I had a good friend the other day when she invited me to her birthday party and I was in a lot of pain, depressed, and not feeling well. I told her I did not think I would make it to the party.
She became very upset with me and said I never come to anything and that if I did not come she would not reach out to me to get together again.
She said I was over exaggerating my pain and what I was going through.
Confused... and it hurt coming from such a good friend... anyone ever have this happened to them?