Still's Disease

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Still's Disease
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    I’m new here!

    Hi, my name is mastonmarie0. I've been diagnosed with Adult Onset Stills Disease and Autism Spectrum Disorder. I have been in current longterm treatment for my AOSD.

    #MightyTogether #MultipleAutoimmuneSyndrome #AutismSpectrumDisorder

    2 comments
    Post

    Chronic fatigue syndrome

    My doctor said I had chronic fatigue syndrome and there is no prognosis how long it will last. But I actually think it's part of my Still's disease the fatigue I'm dealing with any thoughts

    2 comments
    Post

    Anyone on here with #StillsDisease ?

    Hey everyone, #Fibromyalgia and #Scoliosis sufferer here. At my last doctors appointment my doctor said she had concerns I might have #StillsDisease and ordered some blood tests. This morning I got them back and they seem to confirm everything the was worried about. Can anyone with the diagnosis share some of your experiences with me, symptoms, treatments and whether you’ve found them successful or not? I understand it’s an uncommon condition and I just want to get as much information as I can, especially from people who actually have it. Thank you 💜

    3 comments
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    How can I help? . . .

    What would be a huge benifit for you that someone could provide online? I know it’s a vague question, but hoping for a broad range of ideas.

    Here’s mine: I’d love it if someone from the community hosted a daily livestream of guided stretches at the same time every morning. I’d benifit from the personal motivation to be more active, the practice of consistency, and feeling compassion and connected with others in it.

    #CheckInWithMe #52SmallThings #DistractMe #Motivation #ChronicIllness #Fibromyalgia #Loneliness #Depression #Arthritis #StillsDisease

    8 comments
    Post

    Constantly being doubted

    I feel like even though I am going on 3 years after diagnosis, people closest to me still don’t believe I have a chronic illness...it’s really starting to get to me. #StillsDisease

    3 comments
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    What experience, if any, have you all had with the various biologics/injections/treatments? #StillsDisease

    I have more of the chronic, systemic form of still's and I've been in active refractory disease for over a year now. I've tried two different IL-1 blockers and neither of them even touched my symptoms. Just curious to see what kind of treatments have or haven't worked others. thanks!

    3 comments
    Post

    Is my condition part of what makes me… me? #CheckInWithMe

    I don't think my condition changes me at the core of me If anything it has added to who I am My disease has made me stronger has taught me to never give up how to deal with a whole new set of daily challenges and not to feel sorry for myself Yes I have bad days and challenging days but in the end tomorrow is a new day with a new set of challenges and I go on I refuse to let my disease take over my life I have had to modify my life but I refuse to let it consume my whole being and my whole life It helps that I have a wonderful family and a true best friend who gets what is going on a great team of doctors and sites like #TheMighty #CreakyJoints #StillsDisease Continue to move forward and don't look back.

    1 comment