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

Hi Inanna,

Your post sounds sort of like me. Sometimes I'm fine and sometimes I'm really not. After my first visit to my doctor, I wasn't fine at all. I had several days where I felt really tight and moving was hard to do and at the end of the day, I was exhausted. I work at a desk all day and I do make it a point to get up and walk around, etc. several times during the day, but at the end of the day, I end up often hurting, etc.

And then I had a week where I felt pretty good. And then yesterday, my back felt pretty good even though I spent a lot of time at my computer here at home. And then today, I did not spend so much time at my computer, did my exercises in the moring felt "ok" and then in the afternoon my middle to upper back starting hurting so I popped a Naproxen and now it's ok. I really don't understand this, but I do agree with you, it does make trying to tell the doctor what's going on very difficult. It is cycles like I just described above that make me wonder if the doctor was right when he said my problem was muscular. Wouldn't muscular problems be more consistent? Perhaps not.


Jen

Hi all,
Well, I'm much more sick at night when it's close to bed time (pain travelles I guess, sometimes I feel it on the shoulders, sometimes on my neck and sometimes in my chest, I'm never pain-free) and stiff in the morning. But a little pain never leaves me during the day. Sometimes a backpain, sometimes just a stiffness but always there
Anyway I got used to it I found a good way of kickin' it though, I smile

Have a nice day all :)
Meric

Hi Mickey!

The medical books really seem to associate morning stiffness with AS and my Rheumatologist would likely say it's a common symptom too. BUT, in the first 10 yrs with AS, I experienced my worst pain late in the evening and during the first 3-4 hrs of attempting to sleep. Mornings greeted me with what I call an 'aftermath' sensation ... I'd walk about more delicately for fear of starting up the dreaded spasms again. My pain was basically 24-7 but the excruciating hours were less apt to be in the am.

Over the last decade, I've improved considerably and sleep through most nights with only modest morning stiffness which is not too noticeable. I stay pretty mobile right thru to mid-afternoon, and my toughest hours are in the evenings. For me I know it's the inflammatory process, since I've managed to avoid any major mechanical damage to date. Like others have said, I'm fine until I stop and sit down... then I'm toast. I'd just suspect that it is a matter of weakening tolerance as the day goes on, but the extreme degree of difference suggests otherwise.

My Rheumatologist says that normal daily activities serve to further aggravate inflammed areas over the course of the day, and so the time of day one takes meds can make a moderate difference. Most of the (extra) pain killers I take, I take in the evening.

This was interesting reading for me too! I really believed I was an exception to the 'normal' pain pattern. Thanks!

mig

Yeah, I've printed this thread to take to my next appt. Hopefully that will help clear things up for him with regard to my pain levels.

Frustrating, isn't it. argh.

Hugs,

Kat

Hi Jen, good to meet you!! I don't remember if I've welcomed you yet so...

Welcome to KA!!

I think that's half the problem with it comes to treating AS, the fact that not one of us feels the same things at the same time under the same circumstances. All the docs can do is put out a best guess as to reliable symptomology and all we can do is hope we fit that best guess so we can be dx'd and get treatment.

If I were you, I'd print this thread to take to your doc. so that he/she can see first hand what it's like for you. Also, start keeping a journal/log book of your symptoms, when they occur, under what circumstances and how long they last. That'll help you, too, in planning things.

Muscular problems, eh? Hmmm

Have you talked about this on another thread? Where can I find it? Did I respond and not remember? I'm so addle brained this week.

Hugs,

Kat

Hi Meric - Thanks for answering.The pain and stiffness is always with me too but it is much more severe at night. Think I get worn out fighting it but it's not only the fatigue - joints are more painful too. BTW I like your attachment. You should include it in your posts as part of your signature.

Mickey

Mig - Based on all of these responses, I can't understand how off base my doctor is!! He is a rheumatologist for gosh sakes and he has other AS patients. What is he thinking that he is so rigid when it is obvious that symptons vary so much! I am looking forward to my next visit. It's good to have information down pat like this. Thanks

Mickey

I'm more stiff first thing in the morning, and it returns late on in the evening, so I do what I can in the middle of the day.

Since my physio exercises, I now only wake up 2 or so nights a week with back pain (unless flaring).