#32893 - 03/29/06 06:55 AM
Painfree, Whats That?
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pratherken
Registered Visitor
Registered: 12/03/04
Posts: 276
Loc: Fort Wayne, Indiana
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Hey Spondy Buddies
After 43 years of A.S. and a very serious back operation, one might think Im in alot of pain, but Im not. But then again, maybe Im just used to it and have built up an extremely high pain tolerence. I think the latter is the right answer, as those with A.S. are getting their Masters Degree in pain toloerence, and Im sure they would like to graduate more sooner than later, huh?
At an inservice at a Physical Rehabilatation Hospital, I was asked many questions about A.S. and one of the questions about A.S. was this, how was/is the pain with A.S. and how do you deal with it? I just looked at them and said, I like to refer to A.S. as being the Camoflauge Dis-order that creeps through your body. A person with A.S. can look extremely normal but can feel absolutly awful. The pain doesnt limit itself to just one area of the body as it can travel from head to toe, and it all starts within. As for the pain that someone experiences with A.S., you might say that a GOOD DAY for someone with A.S. is an extremely BAD DAY for someone else other than someone with another chronic illness such as Cancer.
Then someone asked me what it would have been like when my pain was the worse, and then all of a sudden I had one hour of being painfree. I just replied by saying, heck what are you talking about one hour of being painfree free, I would have settled for five minutes. For me though, I could deal with the pain because Ive always had a really high pain tolerence, but the fact that everybody looked at me like I was making up the pain was a whole different story.
Take care my Spondy Buddies and for you I wish for the comfort and peace of mind that you so righly deserve.
S.A.A. Indiana and Ohio Cord.
Ken
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#32894 - 03/29/06 09:15 AM
Re: Painfree, Whats That?
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janice
Registered Visitor
Registered: 10/25/05
Posts: 810
Loc: united kingdom
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Hi Ken,"painfree" is a dream,a dream none of us can have because we can't b****y sleep ha ha ha  Seriously though I remember years ago before I was diagnosed with a.s.,I was being treated for back problems due to a ruptured disc.mmm?Anyway, apparantley after the disc had healed, they couldn't understand why I was still in so much pain(even though the radioligist said I had the back of a 65yrold and I was in my thirties at the time!)I must have a low pain threshold they decided. :rolleyes: Considering I gave birth to a 9lb 10oz baby  with only gas & air as pain relief (no epidurals in the 70s)I think their opinion was rubbish.I continue to say "can't see it ain't got it syndrome" is a doctor's disease. Jan
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#32895 - 03/29/06 03:18 PM
Re: Painfree, Whats That?
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Chris Miller
SAA Design & Web Coordinator & Forum Administrator
Registered Visitor
Registered: 02/27/04
Posts: 3006
Loc: Sherman Oaks, CA
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Great post, Ken. Can I use an excerpt from it within the medical AS info on the site?
_________________________
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#32896 - 03/29/06 08:07 PM
Re: Painfree, Whats That?
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Cookie
Registered Visitor
Registered: 08/09/04
Posts: 1065
Loc: Boise, ID
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Pain-free? Yes, just once. It was the day after my hyst and I was on a morphine drip. They got me up to walk down the hall and I practically started skipping, I felt so good!
Unfortunately, they didn't let me take the morphine home.
_________________________
 Diagnosed May, 2004 with undifferentiate spondy. Now have AS diagnosis. HLA-B27 negative female with no family history of spondy. Taking Mobic and Cymbalta. Discontinued Enbrel, Oct 2005.
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#32897 - 03/29/06 08:20 PM
Re: Painfree, Whats That?
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IrishElf
Registered Visitor
Registered: 01/14/04
Posts: 5606
Loc: Upper Midwest
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That was great Ken, you did a really great job of explaining.
_________________________
 As you slide down the bannister of life...May the splinters never point the wrong way.
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#32899 - 03/30/06 02:56 AM
Re: Painfree, Whats That?
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JimV
Registered Visitor
Registered: 01/20/05
Posts: 469
Loc: Queensland, Australia
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The last time I can remember being completely pain free was February 28th 2001. It was for about 4 hours after an operation on my hand to remove a bone cyst from my finger. After the anesthetic (sp) wore off I wanted to go back to theatre for some more.
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#32900 - 03/30/06 07:46 AM
Re: Painfree, Whats That?
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pratherken
Registered Visitor
Registered: 12/03/04
Posts: 276
Loc: Fort Wayne, Indiana
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Hey Chris
It would be my honor for you to use this post in whatever way it seemed fit. After all, A.S. is our homework assignment, and we must share our journey with others.
Indiana and Ohio
Ken
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#32901 - 03/31/06 01:24 PM
Re: Painfree, Whats That?
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Charrlygrl1
Registered Visitor
Registered: 07/15/04
Posts: 1292
Loc: Western Mass
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What an insightful post, Ken!
Though I am almost ashamed to say it, in light of what everyone else has written...I am relatively pain free right now.
It has taken three years (and some days within there were absolutely horrid) but I am now feeling pretty good. I have the chronic aching lower back but I can deal with it...I think that I am so used to it that I hardly even notice it anymore.
Using the pain scale from that other post, I would say around a 2. Was that the one where things were pretty good but with a nasty twinge here and there?
I only say this because I do want to let people know that in some cases pain free can be a goal. I went to my current rheumy with exactly that goal (the previous two said that it would never happen, that it shouldn't be a goal, and that I should learn to deal with the pain). My rheumy helped me work towards that goal and always remained hopeful. So, be you working towards that goal via diet, exercise and/or meds...don't give up. Stay involved with your rheumy, stay informed through this site and others, and do what you can to contribute.
I don't want to give anyone false hope...surely there are times when too much damage has been done. But, again, in some cases, it is possible.
Of course, the support provided here has helped me through a lot. I hope that I have helped some others as well.
I cannot express how important this site has become for me, for the help I have received and for the possible help that I may provide.
Charlene
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#118354 - 07/24/08 07:26 AM
Re: Painfree, Whats That?
[Re: Charrlygrl1]
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hurting
First time visitor
Registered: 06/11/08
Posts: 1
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Hi, I was diagnosed less than a year ago,after 15 years in pain, and lots of doctors. Looking for any information on new meds. I am currently taken enbrel along with celebrex, sulfazine, and prednisone. I am looking to get off the prednisone but when I stop the pain starts back.
Please help, Sue
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