Myopathy

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    Benlysta kicking in

    Benlysta has been great for me. It has been taking a long time to kick in. I'm now at 9 months using it. I still get joint pain and swelling. But other things have gone away. I may be one of those 12 monthers who eventually say what Benlysta has done for me. Any comments from other users out there?
    #Lupus #Arthritis #CNSlupus #Myopathy

    2 reactions 2 comments
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    How do you live with the financial loss from stopping work and being on disability? Plus the depression from not being a working person.

    #Lupus #Anxiety #Depression
    #Myopathy #CNSlupus

    26 reactions 11 comments
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    Pelvic Floor Dyssynergia

    I’m the first to use this hashtag. That just goes to show how little knowledge there is about the condition I live with. It’s so lonely and it’s so debilitating. I feel handicapped in a lot of ways. Meanwhile now one cares because they can’t imagine what it’s like. I’m so happy to have Facebook groups. I have a bunch of crazy symptoms because of pelvic floor dyssynergia. Through the internet ive been able to find people with my same diagnosis who have the same symptoms. I know I’m not crazy, but it’s nice to have that extra validation by knowing someone else with pfd also has... brain fog, fatigue, the need to binge eat to relieve pain/discomfort and others. Still, it’s so isolating and frustrating. And the fact that it’s 2019 and there’s no hashtag for it on The Mighty goes to show how unknown this condition is. #pelvicfloordyssynergia #alone #ChronicIllness #chroniccondition #Myopathy #Neuropathy #hopeless

    4 comments