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

Even with the marvels of Arava I have never quite gotten past that morning stiffness or the stiffness that results if I stay in one position too long, feels like I need oiling. Not pain, more just stiffness that fades with movement. The days I don't swim (like today, thunderstorms all day) I feel it more in the evening, swimming for an hour seems to keep me going the rest of the day. And I do wake up at night because I'm in one position to long and am stiff and have to move. My rheumy is switching my muscle relaxers back to Soma, I've been on Flexeril for about six months and it isn't doing much for me, no difference whether I take it or not.

So the bottom line is most of us are stiff from lack of movement, there is no magical time of day, as in the morning, that's just when we've been immobile for a long period of time, thus the stiffness. If I get up and move around a few times at night I am not very stiff. If I get a good night's sleep (always a gift) then I am much stiffer.

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs always think your cooking is wonderful

Thanks for answering Oak - the humidity bothers me too. We head to the CA desert in Jan and Feb when the rains come and stay in the Northwest.I think it is a combination of the bad weather and being house-bound that makes me stiffer. If I don't get some exercise then I end up like Ellie and Steve where I am stiff and sore all day. I need a couple of hours where I don't have to think about my body or the mental fatigue hits me hard.Hope you get a break from your pain soon. We all need that.

Mickey

Hi Ellie - I'm sorry to hear that you are in the group with almost constant pain. At least I have 5 or 6 hours a day where if I do a good scheduling job then I can do things.Just wish that sometimes that block of time would extend to the evening hours. I'm tired of going to school functions all doped up with pain meds just to put in an appearance and not enjoy the programs. Wishing you a lessening of the pain............

Mickey

Hi Cheryl - I also swim daily and really feel it is what keeps me going throughout the day. Activity seems to make me stiff and sore much more so than inactivity.But then again - if I have to stay frozen in one position then that is another thing. If I can just "putz" all day then it's bearable - it's when I move too much or just sit in one place that hurts.This whole friggin' disease is the pits and a real pain!!! Kinda like nailing jello.Hard to pinpoint what makes it worse cuz that won't be the same thing next week.

Mickey

Years ago (when this was still AIYH) I was stiff in the mornings, but the pain would subside after moving around and I would be fine the rest of the day. That was classic, just like the books.

Now I'm only a little stiff in the morning (because of the Enbrel), somewhat stiffer if I sit down too long, but never, ever free of pain. I still get up and walk every 2-3 hours at night. I'm sure that helps with morning stiffness. I don't function at all in the evenings without an afternoon power nap. Exercise helps to a degree, but it I do too much, I'm worse off than if I did nothing. Pain, fatigue, and stiffness are much worse in the evenings. I usually "save up" my pain meds for later in the day. So I guess I'm not like the textbook model. But there's no doubt I have AS, as I'm participating in clinical trials.

I think it's time for someone to re-write the books.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hi Mickey,
Sounds like I am like many here.
Actually I am in constant pain, but most of the day pain is pain I have learned to tolerate. The middle of the night and mornings are the worse for me. Some morning getting out of bed is almost impossible alone, because of the pain and stiffness. On my worse mornings I may need to take a pain pill and give that time to kick in before I can start out of bed.
After I'm up I wait for the stiffness to subside before I can my day. Depending on how bad the morning is, depends on how long the stiffness will last.
I've learned not to make any appts or plans in the morning, because I just never know. Usually I'll try to get moving as soon as I can, because I know the sooner I can get moving the better the stiffness will be. This doesn't work during flares though.
As far as how much pain I am in later in the day, early eve... depends on how much I do through out the day. The more active I am, the more pain I am in, which is the usual for most types of arthritis and as you've heard...even AS. On the days when I have a lot planned, like this past saturday when I went to a party, I took more pain meds so I could do more and try and enjoy myself. Sometimes that's the worse thing I can do though, because I don't realize just how much I am doing and how much it's effecting me until the pain meds start to wear off and then I am in trouble. I try not to do this very often.
Normal days (what is a normal day anyway? HA HA) when I don't have a lot planned for the day then I just try and do as much as my body will tolerate.
I am careful, especially if I don't want to rely on pain meds, because I know my night could be pain filled if my day is filled with too much.
Since the nerve damage has gotten worse that's when things really started going downhill for me. I was surprised when my doctor told me that even my stomach pain was a result from the nerves in my spine. Showed me how it stems from a certain area in my spine and wraps right around.
AS never ceases to amaze me as far as what and where it can effect us.
Anyway, what I just explained should tell you that your doctor isn't exactly right. AS, especially when agressive and long standing can effect us all at different times of the day. Everyone is different when it comes to AS and it doesn't just effect us in the AM or when we are holding still for long periods. Yes, usually this can make the pain and stiffness worse, but it isn't the only times we feel the effects of it.
Have you talked to your doc about some kind of muscle relaxer for the muscle spasms? Alot of us take flexeril, and although it can make you tired, it can help alot with muscle spasms and stiffness.
Good luck to you.
Hugs,
Lisa

Cindy - you're right - it is time for someone to re-write the books on AS. And I think that Lisa [Litlesis] is working on just doing that. Most of the people responding are like you - gets progressively worse throughout the day and the morning stiffness can be worked out for awhile. I also save up my pain meds for the evening. I am glad to hear your son is doing better! Now if you can just keep your pain under some kind of control................ Good luck.

Mickey

Lisa - thanks. I don't use a muscle relaxer and the doc only wants me to take Tylenol 3 which doesn't usually help all that much. I have found that it helps more if I chase them with wine so that is generally my night cocktail!
Looking forward to your book. Keep on it!

Mickey

Johnny,

I know how you feel about your doc not listening to you. The last time that I saw my rheumy, I told her that the Indocin was not working and that it was causing me a lot of GI distress. So she writes me a script for 6 more months of . . . INDOCIN! When I got home, I just tossed the script in the garbage. There went another $200 down the toilet! I was supposed to go back for a follow up visit Monday (with her nurse practitioner - I guess she doesn't have time for me since she has my AS under control ). I didn't go. It would have been more wasted time and money. I didn't even bother calling to cancel the appointment. Screw 'um! I've paid a lot of money to them for nothing.

Best regards,
Jim

Mickey,

Great question! I'm quite stiff in the morning, but not that much pain except for my ankles. After about 30 minutes, the stiffness and ankle pain is gone. I'm quite normal from about 7AM until noon. It is downhill from there. Severe fatigue begins to set in and by 5PM, I'm hurting bad and can't do much of anything because of the fatigue. If I am able to take a 1 to 1-1/2 hour nap after I get home from work, that helps with the fatigue. But the pain is ever present in the evening until I go to bed around 2AM. I sleep 4-1/2 hours each night. If I sleep more than this, my symptoms are even worse the next day. Go figure!

Keep kickin' AS!
Jim