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Poor Judge of Pain (Anyone have AS?)

May 22, 2017 12:50 PM

Trying this out to help me get better at describing my pain. Apparently I have a pretty high pain tolerance, so I've had trouble relating what is happening with my body & probably held out longer than most before seeing a doctor for my pain. I've been searching for answers for at least 5 years (actively) & was finally given a diagnosis of Spondylitis (with a note questioning Ankylosing Spondylitis next to it) in the past year. I have all of the classic symptoms & I am HLA-B27 positive. But last imaging (MRI about a year ago) showed no fusion in SI joints, which I guess is why there's still a "question" there. I have quite a bit of degenerative damage in my lumbar & SI areas, which contributes to pretty severe sciatica running all the way down my left leg. No imaging done yet on thoracic or cervical spine, despite pretty severe pain in the cervical area. Also have joints affected in arms, hands, feet, ankles, & knees.

Anyone else here with AS?

May 28, 2017 6:50 AM

I am still in what I am calling "diagnosis limbo" but I feel like I have a hard time explaining my levels of pain too which I think adds to the confusion and questioning of many. I have a high tolerance to pain too so it's difficult to describe when I am asked about my pain. I can only say it is real and when it's bad, it is debilitating. I also have sciatica on the right side and disc damage. I hope you find someone who really understands what you are going through. I have "friends" who don't ask me how I am anymore because the answer is rarely positive. Stick with people who understand you and support you :)

May 28, 2017 5:05 PM

I kind of am in the same boat about AS. Have marker but no proof in X-ray. My grandmother definitely has it and she gets thousand dollar shots monthly and they are the only things that help her she says. I also have a hard time understanding the pain. I can never rate it on a number scale. But I find it is easier for me when thinking of colors. Kind of like they do on this site. Yellow, orange, red... White is painless, with yellow and orange progressing to red. If you want, Text me and we can talk more if you want 8013766605

May 28, 2017 5:58 PM

I really like the color idea to describe the pain. That will be super helpful for me. I had three lumbar epidural shots and after a couple of weeks, my back hurt again and I refuse to make that part of my life. I finally found a dr that will let me try physical therapy with my meds and see how that goes. I'm tired of being a lab rat.

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