@A MySpondylitisTeam Member. Thanks for your reply and nice comment about my posts Susie. I needed to read that today more than words can describe. Rough day. This too shall pass blah blah blah... someone slap that annoying "Polyanna" out of me. 😬😄 In all seriousness though, I'm a bit if a social moron, a nod to my youth and most of adult life circumstances. Ive been told i have no filter and tactless a couple times. I try not to be insensitive but unintentionally fail miserably when people are feeling particularly sensitive. I just apologize and block those so not to offend again.

As for the bodywide pain, yeah, im sorry you have reached that point. I describe it as what i imagine a bear hug as tight as can be given by a giant male Sasquatch. Also, i have imagined it might be what waking up in a car being crushed in the car compactor in a junkyard might feel like. Flu has nothing on the immensity of a full body flare. I just lay there wrapped in a heated blanket mostly around my mid back to knees with head just so amongst various pillows to support just right and wait, typically for over a week, at which point i break down and start prednisone. Opiates are a no-go, not more than 2.5mg codeine in 24 hours for me or i itch everywhere and feel worse. Cannabis doesn't take the pain away, but does help me endure better. Biologics nearly caused kidney failure and liver damage that i was lucky to reverse and wont risk again anytime soon. I have yet to hear surgeries that are recommended to me have improved anyone's quality of life. My attempts at stem cell treatments have met a roadblock recently. PT and stretching is causing greater damage and pain to my many torn soft tissues. The jets in my hydro therapy tub have quit working and it will require heavy equipment cutting tile in my bathroom to fix. So..... at a bit of an impasse and not feeling very humorous today needless to say. Maybe my attitude will change if someone nails me up there with Brian whom i posted in a gif on RWs post earlier.
Thanks again for your input Susie, i hope your flare passes quickly and never get any worse. 😌🤙

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A MySpond...

Everyday I go to bed, im worried how ill feel the next morning. Stiffness and pain all over.

@A MySpondylitisTeam Member..am just now able to respond...I live with my daughter and family..oldest is away at college..the youngest is 5 years old boy😵‍💫 I love him but does little for pain relief! I tell you this just to give you insight to my story...I so appreciate your knowledge and experiences with this ever surprising disease. We all are different but bound tight with the one thing we have in common....Pain..
I'm so sorry to hear of all your challenges..no doubt I know of few people with a better more upbeat attitude than you..I was keeping your experience with stèm cell in the back of my mind for future if need be. I'll be 76 soon..I try to watch my diet..take nothing but Tylenol..P.T has been my best friend. To be honest I love everyday my eyes open but hope to slide out of here before I can no longer find relief. Surgery will never be an option. Thx again for sharing your knowledge with frankness and sprinkles of humor!

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A MySpond...

Every day for the past month, no wait, year, hmmm...no, decade. Im one of the lucky ones i guess, just a decade.