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

Mickey,
this is starting to look more common, I was told by my Rhuemy that I should be at my worst in the morning, but I am at my worst at night. I did not think it was the Indocid and from the responses, this seems to be the norm.
Staying in one position for any length of time is bad, I use to sit in nice comfortable arm chairs, but not anymore, I find it comfortable to be in the chair, but almost impossible to get back out again. I have been using an office chair to watch TV, because it is higher and easier to get out of.

Like I said earlier, I am defintitely stiffer in the morning and loosen up by lunch, then I think my muscles become more tense as the day goes on, and the pain level increases. At night a can get to the stage where it is extremely difficult to do anything.

This was a good question.

Thanks
Wayne

WHat tme would you say it is right about now??? Oh and then again two hours from now when I roll over is not going to be any picnic either.

A.M. also no winner but a hot shower and that is pretty much over.

 
stevec-they also serve who stand and wait

Good morning Maggie - I am glad that Vioxx has helped you stay active.It sounds as though your pain cycles fit into what my doc has been saying is typical AS pain. Here's hoping the Vioxx continues to help you.!!

Mickey

Right Christina - it is logical that the pain would be worse as the day goes on. My spine hurts so much after a day of moving, bending, stretching and reaching. Actually, it doesn't even take a day - just a few hours of that activity puts me in a prone position. But like you, if I stay down for any time at all then I can't get moving again. The trick is to figure out just how long to rest and then start up again. Sometimes I have to laugh - I am down for 5 minutes; then up, then down again , then up. This goes on for hours unless I take my pain meds to break it.

Mickey

Bob - my rheumy is head of the department at a major hospital in Portland. He treats several AS patients but he just hates it if I question him about treatment or if I complain. He is of the old school where the doctor is supposed to be the one with the answers. We all know that is not the way it is any longer - too much for them to know and keep up on. He is very conservative in his treatment and I like that but now I am in worse shape and I need him to be more aggressive. That's why I am asking about pain times so maybe I can swamp him with hard facts. Thanks for taking the time.

Mickey

Steve - I know pains really can't be compared and there is no objective means of measuring the intensity of anyone's given pain since we all handle it differently but you have indeed stood out as someone to emulate. With your transplants, your job, and your triplets I just don't know how you do it. I had to retire because of the pain and fatigue but you are the energizer bunny - just on and on and on. I baby myself something terrible - no kids at home anymore so I can rest when I am tired, do things when I am not tired and generally don't even have to talk to anyone when I hurt. I could not perform as you do.Thanks for your input cuz there is no way the doc can say that "maybe you don't even have AS" [ which is his pretty standard response when I quote someone with AS].

Mickey

You asked!!!!!!!!! pain in da morning, pain in da evening, pain in my sleep. sore and stiff in morning gets a little better before I get active then by nighttime I can hardly walk and I have popped about 4 pain pills thru out the day so far.. viox helps but it aint enough so I take a pain killer thu out the day. weather changes makes things worse. if the humidity is high so is my pain if the barometer starts changing I get pain the people I work with stopped listeningto the weatherman and they just ask me how I am feeling to find out what tomorrow will bring...dont get much sleep either up and down all night I'd be lucky to get 4hrs of sleep..sorry for being sarcastic and long winded I am frustrated and in alot of pain right now........oak

I am older then I look and I feel older than I am

I'm with you! Pain is my constant companion. I wake up stiff and sore. Then I work out of that and manage until early afternoon, when the nerves get sore from being trapped in my arthritic spine. Then I suffer until I have to lay down.......and then the cycle starts all over again. EEEKKKKK!

My doctor says that my spine is getting very bad and that is what is causing the pain. But I don't want surgery if I can help it, and the doctors don't want to operate on me, because I have porphyria. So I suffer as the day goes on. Recently I was falling because of nerve damage to my leg muscles, but that seems to have gotten somewhat better. I know it's a long babble, but I hope this has answered your question. AS is supposed to be bad in the morning and then get better as the day goes on.......BUT, with bone damage that isn't always true.

Regards,
Ellie

heya ellie,

when your nerves act up do you twitch alot...I do!!!! My wife and I call it the shimmy shimmy shake because all I can do until it is over is stand or sit and just twitch sometimes it will last for hours once it lasted 3 days(nice way to spend a weekend) my family is scared about this although they dont think I noticed...I have been falling down alot lately. What is porphyria????? sounds awful...thanks oak.....

I am older then I look and I feel older than I am

Thanks for the reply Mickey. I understand you may like this guy, but what good is he if you cant complain about your care or better yet complain about how you are feeling? He should be willing to try different avenues which may work better for YOU. You are paying him for his professional services. You should expect the best and not settle for anything less.
I have been going through this for a very long time. I have had wonderful doctors and ones that seems they went to the Mengela school of torture. I guess what I am saying is you have to take control of how you are being cared for. I hope the info you are gathering on this post will help him to see that he is WRONG....so very WRONG in his thinking.
Let us know how things go with him!!

bob







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