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  • Possible Fibromyalgia Misdiagnosis?

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    Old 07-08-2013, 04:55 AM   #1
    Bettes
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    Possible Fibromyalgia Misdiagnosis?

    I'm 24 years old and have been seeing a rheumatologist now for the past few months. Prior to that I have been in and out of hospitals and doctors for just over a year. I have been very sick, and after ruling out almost everything, plus the fact that I have a large number of the symptoms, my rheumatologist believes I have Fibromyalgia. Although he never told me "I'm diagnosing you with Fibromyalgia", he has referred to "my fibro" on almost every visit. We have rules out autoimmune diseases, any major organ problems like kidneys, liver, etc. We also have ruled out other illnesses that mimic Fibromyalgia such as a thyroid problem. I have tried antidepressants but I just felt crazy on them. My rheumatologist just said to eat right and get as much exercise as I can. I get confused though from time to time whether or not I really have the Fibro. Some days, I wake up feeling like I have the flu. Reoccurring sore throat, body aches, night sweats, headaches and nauseated in the mornings. I might be like this for several weeks at a time. Then some mornings I wake up fine, for the most part. I only have muscle spasms or tingling throughout the day. My "fibro fog" on some days is worse than others. Some nights I have trouble sleeping and others not so much. I may have restless legs for weeks on end and then for a whole month I don't. Out of all the symptoms, the ones that seem to never leave is the fatigue, some IBS issues and lower back pain.
    Is it possible I have been misdiagnosed? Is it normal for fibromyalgia symptoms to come and go like this? Some days I am so depressed I cry and cry. Then there have been times where I have met others with Fibromyalgia and they seem in so much more pain then I am.

    Thanks in advance for your thoughts.

     
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    Old 07-09-2013, 12:19 PM   #2
    Elmbabies3
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    Re: Possible Fibromyalgia Misdiagnosis?

    Hi! I am still in the learning process of my diagnosis but I can tell you it is completely normal for your symptoms to come and go. My rheumatologist just this morning gave me the same suggestions as far as exercise and diet. We have decided not to use medications at this time because I HATE all of the side effects and quit taking them anyway.

    Of course, as with anything else you will see people who seem to be worse or seem to be not as bad as you are. We are all different.

    Good luck on your journey and I hope that you can find a treatment plan that you can live with.

     
    Old 07-09-2013, 11:52 PM   #3
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    Re: Possible Fibromyalgia Misdiagnosis?

    Have you talked to them about CFS? It's the sister symptom to Fibro, but it comes with sore throat, fevers, more fatigue...and a bunch of other stuff that I can't remember right now XD
    Gotta love fibro-fog. They do have a lot similar too. Maybe hope over to the Chronic Fatigue Syndrome board and see if they can give you a hand?
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    Old 07-10-2013, 05:42 AM   #4
    Bettes
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    Re: Possible Fibromyalgia Misdiagnosis?

    I did talk to my rheumatologist about CFS. He assured me its basically the same illness.
    Today I'm starting my new diet and excersise routine in hopes of helping my flare ups. No medication for me either. Thanks for the support!

     
    Old 07-10-2013, 06:06 AM   #5
    Cerene
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    Re: Possible Fibromyalgia Misdiagnosis?

    Good luck!
    I'm 22 and just got in to see a pain specialist who specializes in Fibro after waiting 2+ years.
    Hopefully we can get some relief!
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    Old 07-10-2013, 07:33 AM   #6
    bluelakelady
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    Re: Possible Fibromyalgia Misdiagnosis?

    hi bettes, welcome to the boards. i must disagree with your doctor. cfs is very different from fibromyalgia. my auntie has cfs and is never in pain. just severe fatigue that knocks her down for days or weeks. most of the cfs people i have spoken to have little or no pain just debilitating fatigue.
    suggest you chat with your doc again. also suggest a test for sjogrens just to be sure you don't have it. that one mimicks fibro to a tee. i have both.
    glad you found us and chose to join. we all journey together.
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