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Seeking Advice on Dealing with Fibromyalgia and Doctors

Unicorn_Arist

99d

Hey guys, my sister found out she had fibromyalgia and I'm going to talk to my doctor about it as I have been seeing a doctor for years trying to figure out what's wrong with me. My question is, what is your experience with doctors and Fibromyalgia? I know some don't even believe in it.

5

16

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Fibromyalgia (FM)

Ehlers-Danlos Syndrome (EDS)

Diclofenac

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Top reply
    • Whistler

      66d

      When seeing a new Dr I dont even bring up that I have "Fibro". I get the eye roll. Plus I am irritated that it is a catch all thing. I believe it to be tied in with my ehlers danlos syndrome.

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    • Whistler

      66d

      When seeing a new Dr I dont even bring up that I have "Fibro". I get the eye roll. Plus I am irritated that it is a catch all thing. I believe it to be tied in with my ehlers danlos syndrome.

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    • Doglover25006

      67d

      I have found nurse practitioners to be more beneficial than the docs they work under. They have more time to listen and work through the process of ruling out other possible diagnoses then the trial and error of management for fibro.

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    • emlah

      67d

      Fibromyalgia can be quite difficult to diagnose. Took me 2 years of exhaustion, 10 years of back pain and then all over pain for me to be diagnosed. Fibro is diagnosed when all tests come back negative and you've had pain in all 4 quadrants of the body for at least 6 months. At least that's what the rheumatologist told me (:

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    • Possum8910

      97d

      Honestly, my experience was awful. The doctor that diagnosed me wasn't very nice as a whole but when I asked, "ok so what's the game plan? What steps can I take to manage it?", she said, "well I don't know because I don't believe in fibromyalgia. And I'm nit giving you pain pills." I didn't want pain pills and never asked for them. Other doctors I've seen sense have been understanding and helped with medications and PT. But I do have other chronic pain issues too. It is different for each person, just make sure you have a doctor that's not going to treat you badly.

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    • Koala35fm

      99d

      Ask for a referral to a rheumatologist. If your doctor doesn’t believe in Fibro, go to another doctor.

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      • Unicorn_Arist

        99d

        @Koala35fm I think that's what I'll do.

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    • faerywyrm

      99d

      My doctor didn't believe at first. After all kinds of tests, including the pressurepoint test, she sent me to a rheumatologist who diagnosed the fibromyalgia. One of the first things he did was to educate my gp on fibromyalgia. He's constantly keeping up on the latest developments in fibromyalgia research and works with me to try to find treatments that work for me. After my gp retired, I got a new one who not only believes in fibromyalgia but actively tracks the progression of all of my chronic conditions.

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      • Unicorn_Arist

        99d

        @faerywyrm I love that so much for you! Hopefully I can get some answers

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        • faerywyrm

          99d

          @Unicorn_Arist I have no doubt that you will find your answers... it may take some time to work out treatment options, but it will be worth it.

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    • Smiley.96

      99d

      In my experience, Doctors don't like to diagnose it straight away because if they do it's hard from them to get the ok to do other tests, they usually try a few other tests and things first to rule othet things out before giving the diagnose. This is because as soon as you're diagnosed with Fibromyalgia, any problem you got to the Dr with afterwards, they usually brush it off as Fibromyalgia. x

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      • 55isMe

        99d

        @Smiley.96 i have found the same. My latest condition has been POTS, but really are so closely related (prior was chronic fatigue blended into fibro). It was easily and consistently repeatable that standing less than a couple minutes brought on the distress. But yes, cardiologist did lots of tests to try to find the primary cause).

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      • Unicorn_Arist

        99d

        @Smiley.96 Well, I've been seeing a rheumatologist for years and they can't figure out what's wrong. I've tried Humara with Methotrexate, Diclofenac, Sulfasalazine... They've basically been experimenting. And since finding out my sister has it and it's genetic, I'm hoping it will make things easier to figure out.

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    • blondie93

      99d

      I went in with a full list of symptoms stating I thought it was fibromyalgia. They did the usual let's run blood work to rule out other things, blood showed nothing so it was a pretty quick diagnosis for me. Ask for the fibro pressure point test too.

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    • LALindsey

      99d

      Do a lot of research and plan your speech before you go. Take an advocate with you and the billing code for a Fibromyalgia diagnosis. Not all of the PC providers are ignorant.

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      • Unicorn_Arist

        99d

        @LALindsey Thank you for the advice. I'll take my husband and I have been doing loads and loads of research. It's insane because I've been seeing 3 different doctors for 3 different things and they can't figure out what's wrong with me. Now after reading all about it, it explains all 3 of those things and so much more.

        1

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    • tiffiny

      99d

      My docs believe in it but most regular people don't. I'm in constant pain.

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☝ 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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Some people have reported that their doctors dismissed their symptoms or did not believe in fibromyalgia. Others were diagnosed after seeing a rheumatologist who tested for other conditions first, such as rheumatoid arthritis and MS. Some individuals felt they were misdiagnosed or that fibromyalgia was used as a catch-all diagnosis for chronic pain. It's recommended to see a specialist, like a rheumatologist, to rule out any other possible issues.

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