Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group From bad to...great?

This may sound wierd but I find that occasionally I have a day where I'm almost pain free and very mobile. This makes it difficult for others around me to understand (myself included) because I'm usually very stiff and hunched over with severe pain. I almost get the feeling that on these rare good days others think that I am faking my illness and it makes me very uncomfortable. I feel like I should'nt leave home when I'm feeling good. Strange eh?
Steve.

I feel that way too sometimes! it's odd, isn't it, how we've become so self-conscious?

poo on "people"

-Bridget

Steve - been there and, ignored em... All part of the great jigsaw puzzle One day can be creaking around treading on glass shards and almost crying and the next swinging out down the track, dogette bounding ahead and, and... Then, back to creaking again: hahaha. Does not seem to be a rhyme nor reason, but mayhap weather conditions, atmospheric pressures? Dunno, but you enjoy when y're pain free man, and have others enjoy with you. OK?

Molly

That's the problem Molly, I can't enjoy myself on those good days because I feel like I'm getting the evil eye. There have been times when I've picked up my kids from my ex and not only does she give me a dirty look but she goes as far as telling my kids that I am faking it. My kids don't know what to think. I tend to keep my good days to myself by keeping the same posture and disposition. Sad is'nt it?
Steve.

Know what I'd do Steve? I'd joke it up with her... As for the kiddoes, I'd discuss it with them, tell em that most days y're feeling ... and those are real struggle days for you, but when you have 'good' days then you really want to celebrate and have em celebrate those good days with you. Sure as heck wouldn't let anyone put my head into a guilt heap over it...Ha!

I have a neighbour who has tried that with me (and I am very fond of her, really nice person, but she sure as heck did 'not' get it). Over and over, until she herself went through the mill, with, spondylosis What you might call the 'biter bit'...

Hang in there Steve, you be 'yourself' and don't let *no-one* spoil your good days - they is days to be treasured man.

Go grasp the nettle, she can 'look' all she wants, just smile (confuses the enemies as they say 'smile') but when you are feeling rough, then she'll know that is truly rough as well. Pity she can't go sit out in a rheumy waiting room at a hospital, that'd show her!! Don't be put down Steve - can't fake true pain anyways.

Molly

That is kind of what I view as having a flare or a flare free day.

I have days that I can hardly get out of bed, then days I feel pretty good, I have learned not to try and OVER do it when I feel good or I will pay for it the next day.

Lisa

Steve,

Your 2 little angels aren't stupid, Mom might try to fool them but they are going to grow up and realize there are illnesses and diseases and just because you look ok one day doesnt mean you are....shoot! Ive know people with cancer that dont miss a beat, except for their hair loss you would never know now that is awesome to me.

Your kids love you and if you have any doubts sit down with them during a meal and kind of explain to them how you feel.

Lisa

AS, and disease in general, isn't as simple as X symptom at X level for perpetuity. This is a usual response from people who are looking to get out of an obligation to be sympathetic or helpful to you. Your ex gives you the evil eye? Well I guess that answers that question.

AS responds to what you are doing because of the presence of the hormone (whose name escapes me) that causes the inflammation.

As much as it is always present in accelerated amounts (the illness), this in itself can also be exacerbated by injury or other illness as your body follows it's correct regimen for healing and releases more of this hormone as it should.

So you will have good days and bad days. Sometimes you'll exercise too much, sometimes not enough. Sometimes you'll sit on the couch at night a bit funny and set off a muscle spasm the next day (not fun).

People who tell me I am faking get told the story where I was sent to hospital because the muscle group in my lower back was spasming involuntarily due too inflammation. And by spasm involuntarily, I mean the muscle would contract every ten seconds and pull me backwards until it let go. I can't describe the pain to you. Imagine getting stabbed, then getting stabbed again in the exact same spot, repeatedly. It was a vicious cycle, it kept making itself worse.

A double doses of morphine to cut the pain didn't touch it. They gave me the best anti-inflammatory drug they had in the hospital and broke the cycle. The area felt like it had been jumped on by a football team for weeks after though.

So yeah, get some naproxen into ya. Good Luck.

PS. Using the kids as a weapon. What a shameful woman!

Strange, maddening, and seemingly very common among AS kickers. I used to tell my mom and dad, "Look, if I knew what it was that made me feel this great today, I'd do the exact same thing everyday." Heck, some days I even tried to exactly copy EVERYTHING I did the previous day when I felt so great, but it never worked. Luckily, the same held true for feeling rotten--even if I went and did the same things I did on the day I felt bad, it was just about 100 percent certain I would not feel bad the next day. As I liked to say when my disease activity was at its peak: "There's just no rhyme or reason to this disease, as the same things that make me feel terrible one day make me feel great the next." (this really held true for my pool exercises, which on one day would really loosen me up and then when I did it a few days later, would leave me in excruciating pain. Or vice versa!)

Maddening, maddening, maddening.

Brad

Brad

I hear you so loudly Stever...I look healthy and "normal" but my pain levels are outrageous. I think my in-laws think I'm full of crap also......