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Clifford Theodore Lexi-Lou
Re: When will the pain end
Mon Jun 22, 2015 20:48

Hello. My pain level today is at a 4. I tried to taper off of prednisone and that was a mistake. I am sorry that you are going through this. I know that when I was young and in college (pre-stills days) I got Ebstein barr illness and was so sick for three months of aches, pains, fever and I was a single mother at the time. I had to drop a class and barely made it through. I thought that I would never get better. I wanted to just go to sleep, forever.

This year has been tough. Without the prednisone, I am bed ridden and in so much pain that if I move or even sneeze I scream out. The high fevers, rash, fatigue, aches, skin sensitivity, muscles ache as if I have been in a car accident and bones that feel like they are scraping on each other. The fevers are 103 and up. My throat hurts bad and lymph nodes are swollen. This is what a day without prednisone or tapering off prednisone looks like for me. Today, is not such a bad day.

I am being sent to Utah this week for further testing. I live in Idaho but I guess the specialist are not special enough lol. I do not have an official stills disease diagnosis yet, but I hear that it can take some time.

I would like to know more about your situation, your symptoms and so forth.

I have read people's stories that have included years of remission. I just think it depends on getting a good doc, the right meds and knowing your limits. What do you think?

I am glad that you reached out on here. I am fairly new to the group and have felt so grateful to talk with others that know the same pain as I do.

Stay strong, have pity parties, and then stay strong again:)


  • When will the pain endsana, Sat Feb 21 18:49
    I am a college student and fed up with the pain, I could not live with it,I have done everything , and spend money ordination but did not heal, how long I will stay for this case . Please tell me
    • Re: When will the pain end — Clifford Theodore Lexi-Lou, Mon Jun 22 20:48
    • AnswerLR, Sun Feb 22 00:11
      Hello :-) Have you gotten genetic testing? The doctors realized I have Familial Mediterranean Fever, and the doctors had me misdiagnosed for Still's Disease for years. Thank you
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