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

Hi Mickey,

Good question

I have increasing pain throughout the day but in my case I think it's reasonable cause usually I've been sitting long time in the office. It's like being tired after a whole day of activities for normal people.

On my best condition - some stretching, hot water and rest would make me back to normal again

Take care,
Sinta

Hi Lisa,

Your post could have been written by me!! I don't think there are any hard and fast rules, for any of us, and, as you said, if you're in a flare, the pain is unrelenting!

I'm still trying to sort out this wretched jaw pain after 2 years.......(which, although my TMJ is basically stuffed, according to my MRI, everyone seems to agree is NOT the cause of the gruelling pain I'm in, 24/7!) Neuro thinks it's a damaged nerve, but is getting cross with me b/c I can't tolerate Neurontin (or any of the other meds he's tried me on!). They make me feel like a zombie - I nearly drove into oncoming traffic one day! HE says I have "Chronic Pain Syndrome", and wants me to see a psychiatrist, or a Clinical Psychologist, thru the Pain Clinic I'm attending, for "assessment", as he says I'm on too many different meds (he asked me why I was taking 2 different NSAIDs, and none of the antidepressants he's prescribed for me....and why do I nee Endone as well as Oxycontin.......??? I said, 'cos it's the only thing that HELPS control the pain without making me comatose!!!)

My rheumy has suggested a course of radiation therapy, as nothing else seems to be working, and HE doesn't know what else to do for me. I'm a bit worried about the side effects, but just about desperate to give it a shot.........:(

Sorry of I got off the topic.

Hugs,

Sue

I couldn't agree with you more, Mickey! "Nailing jello"!! LOL You hit the nail right on the head, Girl! And you're right, this whole friggin thing is "THE PITS"!!!

Wouldn't it be GREAT if all these flaming "specialists" had to walk in our shoes for a few days/weeks/months........???? They might try harder to find a blasted cure.........:(

Hugs,
Sue

Hi Mickey,

Please note I am not diagnosed withanything except IAIYH, even though my x-rays show fusion and extensive damage....damage that was labelled "unimpressive".


I pretty much have constant or near constant pain....the only thing that changes from morning to night is the TYPE of pain I am experiencing.

However, once I get moving at work, (I work in retail and I am on my feet all day long,) occasionally I will have a few hours when I'm fine...until I sit down. This is why I HATE taking breaks until very, very late in the day....because once I sit down none of my joints want to support me getting back up again.

The weather plays a big part in my pain too...I feel a storm coming the day before it happens, and it really grinds me to a halt at work now and then.

The pain in the morning is more of a feeling like my joints and/or disks are made of sandpaper....it's a searing, stiff pain that I've noticed comes after a period of a few weeks of intense swelling (or, as in my lower back/SI area, a particularly **bloated** feeling that I later figured out was swelling!!!)....this seems to be typical inflammatory cycle. The swelling was labelled simply as "edema" by doctors because they were looking for something obvious, HUGE and angry red, like in RA.

Just like my ankles had the swelling>pain>more swelling>more pain cycle, almost everything from my TMJ to my lower back and SIs have had this cycle. I try to tell docs about this and it's like I'm making this up, or it's not impressive enough or obvious to THEM what is wrong. Plus my bloodwork is perfectly normal so there can't be anything wrong, right???

At night it's more of a general achy, fatigued feeling (NOT just simply"tired", but fatigued!!). Standing all day with lousy joints and vertebrae can't logically be ANY good at all!!!

Rox

"I have seen the beginning and the end of our story.....the tale is crude and ill-conceived. We must rewrite the ending of it, you and I."
http://www.geocities.com/artisan1998.geo/index.html

Hey Mickey!!

First of all, please let me welcome you to our family.

Secondly, I meant to respond to this yesterday, but what with the blackout I've been too busy to respond to everything I want to.

As to pain, my lower back and shoulders/thorasics tend to be somewhat stiff in the morning. Sometimes a hot shower helps, sometimes deep breathing as I walk to the subway helps. Sometimes nothing seems to help but time and movement. Sometimes I'm OK. It really depends on the day and how I've slept. Sometimes I toss and turn at night and, if I haven't taken advil before bed, I have to get up (this morning at 4 for instance) to take some. Sometimes, I toss and turn even with the advil. Sometimes, I sleep right through. However, there's always pain. Sometimes it's centred in the lower back, sometimes the thorasics. After a busy day at work (I type for a living), my left hip feels like it's going to pop through my skin it hurts so much. And after sitting still typing, my thorasics and shoulders become so tight and achy. Sometimes not. At the end of the day, I find it's much worse than during the day, because during the day I'm up and down delivering work. If I'm busy in the evening, it's better, but then I get so darned tired and exhausted. If I'm not busy, I become progressively achier and stiffer.

Long walks are good, but after a while my ankles get fatigued, or my knees, or my hips, or any combination of the three, and I know I have to stop. Sometimes I can keep walking, as long as I slow my pace, others, I must stop and sit for a bit until I have the energy to move again.

There's a lot of 'sometimes' in my post. Sometimes it's bearable, sometimes it's not. Sometimes it hurts, sometimes it doesn't, and, like most of us here, there is no actual discernable pattern to it. Which makes it difficult talking to the rheumy about it.

Hugs,

Kat

Hi Sue,
Nice to see you Although I wish I was hearing better things.
Your rheumy mentioned a dose of radiation...that's sounds scary!
Don't know if I could ever go to that extreme, but sometimes the amount of pain we experience can make us do almost anything. Like you said..."desperate"
I am curious about something you said regarding the TMJ..." my TMJ is basically stuffed"
What does that mean exactly? I have never heard of it.
Have you see an Orthodontist? I think that's what they are called. It's been like 15 years since I seen one and I forgot what they are called. Somebody that deals specifically with problems of the teeth and jaw and also do the surgery? Regular docs, even neuro's aren't trained in the area enough. They think they are and some may know more than others, but an ortho is what you need to see, if you haven't already.
It seems like neuro's are big at sending people to psychiatrist, or a Clinical Psychologist, thru the Pain Clinics. When things are a little unclear to them they think this is the answer. So, don't think you're the only one they pull this on.
I have been taking the neurontin also, but can't take it the way it was prescribed. I should be taking 3 a day, but all I can do is one in the evening and not every evening. I am having some strange side effects from it. Did you experience anything really weird from it?
Anyway, keep your chin up. We always end up finding answers somewhere.
Big hugs,
Lisa
PS
I'll PM you later ok.

Hi Jim - Boy do I understand the ankle pain in the morning. Who could guess that an ankle of all things could hurt so much?! Sounds like you are with the majority of us who have escalating pain throughout the day. That fatigue is also one of my worst enemies. We seem to be going down the same road together.

Mickey

Thanks Sinta - I am getting quite a good response to take to the doctor next month. Sounds like most of us have pain and stiffness that progresses throughout the day. I don't work any longer so am not chained to a desk or on my feet for long stretches but still by the end of the day, I am wasted!

Mickey

Hello Ms. IAIYH - You are so right in that there is a HUGE difference between tired and fatigued! You have been having so many problems with your dx but still you are right in the "norm" for females.I think there is a lag time of 10 years before we can get a firm dx - or maybe now it is not quite that long but it sure as heck is not as quick as the male dx.It took me about 16 years of the complaints like you have before the rheumy decided it wasn't AIMH. Hang in there.

Mickey

Hi Kat - you are right in the "sometimes it does this - sometimes it does that - and sometimes it does it all " syndrome.I have that too. And often when I see my rheumy [ I go every 3 months] I have had so many different cycles that I forget to stress the most painful ones. Then I remember when the "sometimes this" comes back again!! So now I am taking notes on this thread so I will have the language I need to let him know what exactly is happening with me. Thanks for helping me.

Mickey