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A MyFibroTeam Member asked a question 💭
Gettysburg, PA

I've been dealing with the pain, fatigue, headaches, etc. of my presumed fibro for years, but have yet to be given an official diagnosis. If for no other reason than being able to let my school know why I tend to be a wreck from time to time, I'm finally getting to the point where I really need some kind of validation. How has everyone went about the "official" side of things?

September 10, 2016
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Answer Summary

Members seeking an official fibromyalgia diagnosis shared that doctors typically work by ruling out conditions like MS and lupus through... Read more

Members seeking an official fibromyalgia diagnosis shared that doctors typically work by ruling out conditions like MS and lupus through extensive testing, with many describing the frustration of being dismissed or feeling like their symptoms were all in their heads. Several members emphasized the importance of self-advocacy, including directly asking for a rheumatology referral, requesting a formal letter from an understanding doctor to provide schools or workplaces with needed accommodations, and not hesitating to seek a second opinion if a current provider is dismissive. A recurring theme was the emotional toll of diagnostic limbo, combined with encouragement to persist in finding validation and exploring root causes like leaky gut or autoimmune dysfunction.

A MyFibroTeam Member

Certainly get an official letter from an understanding dr. Within in the letter have him explain the things YOU need related to school. For example it could start out this way....Ms. Jules has been diagnosed with fibro/Chronic Fatigue/EM etc. She is able to complete schoolwork as other students however various adaptations must be made...blah blah blah...her condition is serious and is of importance that she is not pushed to complete tasks on short timelines etc. If more info is needed contact my office at .....etc

Keep copies of this letter with you signed by the doctor. Giive to professors etc at the beginning of each semester.

September 10, 2016
A MyFibroTeam Member

My Dr. Told me that the diagnosis fibromyalgia is a waste basket diagnosis for Dr.s who don't know the answer. So after tons of testing..he diagnosed me with MS, than changed it to Lupus, than in the end final diagnosis was Fibromyalgia. All 3 of the diseases are very similar.

September 10, 2016
A MyFibroTeam Member

Now what is every one doing for treatment besides muscle relaxers. Pain ex meds. Cortisone injections. Etc. all of those are great symptoms - it's necvesaaey to get to the root cause.

October 4, 2016
A MyFibroTeam Member

I just got my diagnosis last week.

October 4, 2016
A MyFibroTeam Member

I had put the bug in my Dr's ear a couple of times over the years. Thought it was all in my head. After I started working in healthcare I realized that's it's impossible for doctors or anybody in healthcare to remember everything they learned. Finally I got fed up one day and told her I'm 99% sure I have fibromyalgia. For the first time she wrote down all the symptoms I had gone to her about over the years. I demanded to see a rheumatologist. So off to the rheumatologist I went and got my answer. So if she/he won't budge, go and get a second opinion. Good luck!

October 4, 2016

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