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catdad22

481d

Because fibromyalgia is a diagnosis of exclusion, do you ever have trouble trusting your diagnosis, especially since your body changes and more health concerns come up over time?

Top reply
    • CoffeeAndDogs

      472d

      Yes, I have always struggled even after 11 years since I was diagnosed. Personally, I feel like there is a huge lack of validation of our symptoms and experiences with a Fibro dx. It seems so often we get brushed off or told it's not that serious or toted off with some new diet or physical therapy. I developed a lot of comorbidities over the years and it's so frustrating to feel like I have no answers or control. But I'm still fighting, advocating, and searching for more answers.

    • DogWhisperer

      471d

      I'm glad this app showed up during one of my games I play on my phone. Im finding out so much about my diagnoses that the drs have never told me. There should be drs monitoring this app so they can be a part of knowing it too. So it can be put in like records or something for other patients. For people who have no clue ya know what I mean?

    • Nicole_J

      472d

      I’ve always thought there is something my doctors are missing

    • CoffeeAndDogs

      472d

      Yes, I have always struggled even after 11 years since I was diagnosed. Personally, I feel like there is a huge lack of validation of our symptoms and experiences with a Fibro dx. It seems so often we get brushed off or told it's not that serious or toted off with some new diet or physical therapy. I developed a lot of comorbidities over the years and it's so frustrating to feel like I have no answers or control. But I'm still fighting, advocating, and searching for more answers.

    • DogWhisperer

      472d

      And see noones ever told me there's other things associated with fibro. Dumb drs tell me they don't know why I'm in so much pain. Ffs

    • Mama.Bee

      472d

      I see my fibro as a symptom, definitely nit a cause or an isolated incident. The NP that diagnosed me was also a quack and didn't listen to much I had to say.

    • Backnbodyhurts

      474d

      I have sjogren’s now and wonder if I have fibro or it’s all sjogren’s.

      • CoffeeAndDogs

        472d

        @Backnbodyhurts Interestingly enough both Sjogrens and Fibro fall under the umbrella dx of Dysautonomia. But it is quite difficult to know what is causing what symptoms.

    • Grammy6

      474d

      My 1st autoimmune diagnosis was Fibromyalgia. I was diagnosed at Mayo Clinic. You know something is wrong. The doctors know something is wrong. I believe I found myself questioning for a few reasons. 1. Because it felt like coworkers, friends, chiropractors, and even a couple family members were questioning the diagnosis. 2. No one could see what was wrong with me by looking at me. 3. I DID NOT want to hear I couldn't fix it for good. Just some food for thought....

    • cat69

      474d

      I had like injury telated fibro..i injured myself and worked untreated for over 2 years and by the time i got treated my body was in severe pain even after addressing each body part injury..it makes sense to me..chronic acute pain damaged my pain pathways

    • Karrieanne73

      474d

      I have hypothyroidism, RA, sarcoidosis and fibromyalgia … I’m getting tested for pots and reynauds. The sad things is so many symptoms of them all overlap so you never know which one is from which disease

      • Grammy6

        474d

        @Karrieanne73 my symptoms overlap too! So frustrating!

    • GracieXo

      475d

      Yes!!! Just recently thought they’d got it wrong and I had PCOS xo

    • JustRachelle

      481d

      I forgot to mention… within a year I was diagnosed with Raynuads Syndrome & POTS.. I also now have imaging proving that I have a type of scoliosis, renal cyst and thyroid nodules.. i feel like this can all be tied together but my doctors are saying they aren’t.. it’s so confusing…

    • Estarfyre

      481d

      I actually spoke to my PCP about this yesterday. I've been questioning my diagnosis every day for the last 15 or more years. She is going to send all of our conversation to my neurologist and have her talk to me about it as well.

    • Dodo21

      481d

      As you probably already know, Fibro is not a primary illness, there is usually something else that damaged your body, your nervous system, your gut, etc that caused Fibro. It usually doesn't come alone and there are many other conditions correlated with it. So your diagnosis can be correct but just partial. And unfortunately, it is the same for all of these "not very well know yet" health issues. I have seen 3 different specialists in 2 different countries before being sure about Fibro "officially" (I was already quite sure before seeing the first one). But, on the top of it, I have GI problems and doctors keep on saying "it is just IBS, just cope with it and take probiotics, there isn't anything else we can do for you". They didn't want to refer me to a Gastroenterologist, I have never had an endoscopy or colonoscopy done. I went through every silly, funky, crazy diet, but the problem is still there. Sometimes it is manageable, sometimes is not. And it has been like this for 20 f...ing years.

      • thepatrynreader

        476d

        @Dodo21 somehow, not one provider has explained to me that fibro is *not* a primary diagnosis. Wtf, knowing that changes my perspective completely and helps me a doer the many, many additional diagnoses I seem to be collecting 😒 wtf. Thanks for sharing!

        • catdad22

          476d

          @thepatrynreader Same. I’ve never heard that it usually comes alongside another diagnosis. Ahhhhh 😣

    • crafty_spoony

      481d

      Totally. I was diagnosed with EDS in my teens, with HSD later on, and now although fibromyalgia explains maybe 50% of what I experience on a daily basis, there are other conditions that have similar symptom patterns. I look at these and wonder if I should go back to the Drs and ask for further tests, in case it's something that can actually be treated and mot just managed.

    • JustRachelle

      481d

      Every day for the past 8 years. Smh I have some days where I’m like “I have fibromyalgia” but then there are others where I’m still searching for answers.. begging for answers

    • thepatrynreader

      481d

      100%

    • Maisy

      481d

      Yes defo have lots of doubts

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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