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Joined: Apr 2009
Posts: 1,576
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,576 |
Janet,
I'm so sorry to hear you are in pain. I offer my experience because I was only recently diagnosed and so I spent the last 14 months thinking I was going to die from a disease the doctors could not figure out. So, before they knew I had AS, here is what they gave me to keep me "going."
I took 10 mg of cyclobenzaprine (a muscle relaxer) every night before bed. This would stop the muscle spasms and night time pain I felt, allowing me to sleep deeply for 8 hours. (That alone is magnificent, I never feel so close to insanity as when I am not sleeping at night!!) Then on really bad days the one pain med that worked wonders for me was hydrocodone 500mg. It would take away the pain, and yet I wasn't dizzy or tired with it. I could actually do dishes, laundry and sort of take care of my family. Awesome.
At my diagnosis appointment, the Doc knew he needed to buy me some time while they petitioned the insurance for Enbrel use and so he gave me a 120mg shot of steroids, the oil-based slow release kind. I know steroids are bad, but I was 98% free of AS symptoms the next morning when I woke up and it lasted 2 weeks, on the third week the fatigue returned but still no pain, and now I am on Enbrel and waiting for it to kick in. The only bad side effect I could "feel" from the steroid shot is that I had an extra menstrual period. I say "feel" because I know there are unseen detrimental effects of steroids. The Doc explained the difference between oral prednisone and the shot is that oral spikes your levels of ?cortizone? and the shot raises them fast and slowly they lower as it wears off.
My friend sent a card that said, "Like you need one more person telling you to hang in there......So I'll pray and ask God to remind you that his hold on you is secure."
This disease is horrible. No two ways about it. But I believe that God won't give us anything we can't handle. So in my mind I imagine all 6000 of us AS-er's as a giant Army of Strong Warriors because God knows we CAN handle this.
Take care. Be strong. Donette
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