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A MyFibroTeam Member asked a question 💭
South Lake Tahoe, CA

Within the last 5 years,,when you are diagnosed with Fibromyalgia, what do the doctors tell you, about what Fibromyalgia is?

January 9, 2019
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Answer Summary

Members reflected on being diagnosed with fibromyalgia over the past two decades, with an overwhelming consensus that doctors often provided... Read more

Members reflected on being diagnosed with fibromyalgia over the past two decades, with an overwhelming consensus that doctors often provided minimal information, failed to understand the condition, and sometimes dismissed it entirely. Many members shared that they learned far more through their own research, lived experience, and this community than from any medical professional, emphasizing the critical importance of self-advocacy and finding the rare open-minded doctor willing to learn alongside them. A recurring theme was the frustration of endless appointments with little support, being over-medicated or left to figure things out alone, and the slow but hopeful progress happening as more people refuse to accept inadequate care.

A MyFibroTeam Member

Claudia, yes, when you said 18 yrs ago they gave you Vicodin an kind of left you alone.. I feel that not much has changed... they still don’t lnow much.. scientists are learning more, but slowly, and because Drs don’t know, they tend to not believe in it and roll their eyes, instead of admitting they don’t know enough about it. That’s why being our own advocate is soo important! I’ve learned more about it from research and my own body, and through others that have it than I have through any doctor yet. It’s sad but true. After I finally found a doctor with an open mind, who I chose, after checking out other doctors, she was who I knew would be good for me. She’s learning about it and we work together learning. She is my regular doctor as well as being open to Fibro. I’ve had Fibro 11 years now, and she’s been my doctor for 3 years.. I wish I had her from the beginning, but so glad now. Anyway, sorry for the long post😄.. but it’s just soo important to be your own advocate💜!

January 9, 2019
A MyFibroTeam Member

They really don't.

They're more interested in forcing you to come back for appointment after appointment because they know that there's little to nothing that can be done for it. It would do you well to look up and read medical journals with a focus on fibromyalgia.

Hope this helps!

January 9, 2019
A MyFibroTeam Member

I'm so sorry. I went through hell thinking, researching, normal CT scans. As with anything they can't pinpoint it really raises your anxiety and is a serious mindf#c#

January 11, 2019
A MyFibroTeam Member

I have had fibro for 25yrs. Probably when it was first found. Everyone is right. U were given pain meds and told u needed to come back for another appointment after another appointment. Doctors had no clue what fibro was nor did most not believe in it. My neurologist had me drugged out of my mind. I finally realized this when I crashed my car. I was damn lucky I was not hurt. My guardian angel was with me that day. I got myself together and took myself of all meds I was on. Never did find a Dr that would help me till late last year when I went to pain management. I have also learned a lot from this site. To sum it up find a caring Dr that believes in fibro and be your own advocate

January 10, 2019
A MyFibroTeam Member

My Doctors are not half as educated about fibromyalgia as they claim to be. My PCP was refusing to prescribe my two necessary medications because she thought that I was not following the medication protocol that was established by the Rheumatologist in Honolulu, what she failed to realize is that the only reason I was having to take my narcotic pain meds is because she had refused to authorize refills on my medications for 5 weeks

January 11, 2019

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