Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ? When is the pain worse?

The more I move during the day, the worse I am at night.
After I sit down, I can hardly get back up.
Although I do have periods where everything is stiff and hurts in the morning, my worse stiffness and pain has been in the afternoons and evening.





Susie

Hi Deborah - Thanks for taking the time to answer me too. I am going to take these responses to the doc and see if he might admit that progressive and escalating pain can also be part of the AS. I am campaigning for Enbrel or Remicade but he is reluctant because he thinks only morning pain/stiffness is symptomatic of AS. He says he doesn't know what is causing the rest of my pain but"knows" it isn't my AS.

Mickey

Hi Mickey

I am very similar to you. Lots of pain all night tossing and turning, bad first thing in am. then do pretty good until about 4pm. Then it progressively gets worse until I am hunched over and ready for pain meds and bed by 8pm. I figure that gives me about 6 decent hours out of 24. Not bad. It could be worse, I guess!!!

Simone

You know what Susie - that is exactly the same with me. If I go out shopping for a couple hours or try to deadhead my flowers then I am finished for the evening.I can only do the deadheading cuz I can't bend to the ground to do the weeding [ thank God for husbands!] I have way more pain and stiffness in the evening on a day without any activity but with busy days it is unbearable.

Mickey

Simone - isn't it starting to sound like the "norm" is escalating and progressing pain throughout the day. At least for those answering my question. I agree wholeheartedly that it could be worse - I am so grateful for those 6 or so hours that I do have where I can get out and do things.But by 8 I am no good for anything. Since I have become best friends with my recliner and heating pad though, I have managed to wade through lots of library books!! My evenings are very quiet and peaceful now - not painfree but peaceful.

Mickey

I know how you feel. I have often said to my husband that it is sad that I look forward to 8:00pm so much, to get my pain meds and get into bed. I feel like it is my reward for a hard spent day. Of course it is hard with my kids being 11 and 13 to actually make to bed by 8 pm but most nights I don't have much of a choice.

It does sound like the norm to me also.

Simone

Hi Mickey

Often, sleeping is a really bad time for me. It is very difficult to stay in any position for too long. In the mornings I am very stiff and have to do some stretches to linber up. Before taking Vioxx, I was barely able to move much at all in the mornings.

During the rest of the day, I am worst of all I think if I sit or stand still too long - heck, actually if I do any single movement or position for too long. Long car journeys are agony.

Best for me to stay active but then if I sit in the evening, it is really hard to walk when I stand up.

So actually I have rambled on and not really answered your question.
I think throughout the night is maybe often my worst. Vioxx, although many dissagree with its use, has so far been a God send for me really and allows me to remain active through the day.

Maggie

Edited by Maggie on 08/19/03 11:33 PM (server time).

Hi Mickey,

Yes it is hard to schedule a life! It sounds like you are enjoying your grandchildren a lot tho! Who would ever have guessed that sitting still and it causing pain could be a disease! Not me! I just kept thinking that it hurts to get older! lol

Trinka

Hi Mickey,

My pain is like yours. I do okay in the mornings, a little stiffness and pain in my shoulder depending on which one I've slept on and some in the lower back and feet. Once I get going and after a hot shower I feel much better. I think people must wonder about me jogging to the bus stop with a cane but after spending 20 minutes on the bus I need it to get through the stiffness and pain from sitting. As far as the rest of the day goes the pain gets progressively worse as I have a job that requires me to stand a lot. By 5 pm my hips hurt and after sitting for a few minutes on the ride home I don't even want to think about walking.

I think my doc was a little puzzled about my pain pattern too. He scrunched up his eyebrows when I told him my worst pain was in the evening. Think about it though, how do you think you will feel after spending all day moving around on painful joints? Something is happening internally to cause the pain in the first place isn't it? Won't moving around aggravate inflammation and damaged tissues? Sounds logical to me. To hell with the textbooks!

* Christina steps down carefully from the low rise soapbox, cane first*

The End
Christina

I would tell your rheumy to take a flying leap, to put himself in your body and then tell you it cant be the AS. GRRRRRRRRRRRRRRRRRRRRRRRR LOL I cant stand it when they think they know it all and worse yet when they try to bull**** their way through.

I was like you....mornings were ok for me but the later in the day it got the worse I became. The stress, physical activity during the day made me toast by night time. I couldnt wait for the day to be over.

Bob



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