What time of day is the pain worst for you?When I toss and turn alot at night, I wake up fairly mobile - it only takes me a couple of minutes to get moving. By noon though I am starting to feel stiff and starting to hurt; by five I am in quite alot of pain and often start with the muscle spasms; by seven I am stuck in my recliner with a hot pad and lots of pain. My rheumatologist says this is not AS pain and stiffness since that is always worse in the morning. I do have AS and he is treating it but he says it must be getting better since my morning stiffness is not as severe. So I thought I would ask if everybody is more stiff and sore in the morning or if some of you have pain that increases throughout the day.Thanks.

Mickey

Hi Mickey,

I do rather well in the morning too. (Knock on Wood!) My pain was always the worst when I was just sitting, like at a computer or at a baseball game, anything along those lines.

Trinka

I'm definitely more stiff in the morning, but more sore in the evening. I really think the books are wrong about AS pain being worse in the morning. I find that daily movements and physical activity seem to add up and come to a peak of pain when I return home and sit down and relax for a while. But then again, why would you listen to me, my doctor doesn't even know what is wrong with me.

But that's my 2 cents worth anyway.

Johnny

Hi,

I am the same, I am stiff in the morning, but also in the least amount of pain (and try to do anything physical in the morning, as I know at night it will be almost impossible), as the day goes on, I get progressively worse until I am almost immobile at night. My Rhuemy also is a bit confused over this, but is pointing the finger at Indocid Sup, I take this just before I go to bed.
I think this goes against the norm for AS patients.

Hope this helps
Wayne

Hi,

I wake up a lot at night with my back and hips and sometimes tailbone in pain. I often wake up in the morning stiff and sometimes in pain. This past weekend I woke up with sore/aching ankles. I have noticed that in the evening I am often more in pain. The past few weeks have not been good, but this past week has been better.

But then, I was told I don't have AS, that my problem is all muscular.

Jen

When it was only in my back I would wake up with a sore back and sometimes it got better as the day went on and sometimes it would last for weeks. Now it is in my shouders and hips I usually wake up and know they are sore and as the day progresses
the pain escalates. By the end of the day I can hardly wait to go to bed and take something to help with the pain. I know my rhuemy always asks that same question. Are you stiff in the morning? I think they are so focused on that question that they ignore other areas. I really don't think there is a set pattern to the pain of AS but it is in the textbook as stiff in the morning relieved by activity and they are stuck on that.
And yes sitting for long periods does not agree with me either. At least now I know why.
Could never figure it out how other people could sit for long periods and not bother them.

Hi Trinka - I also get real stiff when I have to sit for any length of time.But if I have to sit in the evening - like at a grandkid's school function - then I need help to move. I try to schedule all of my activites between 10 and 2. Kinda hard to do and still have a life.

Mickey

Johnny - your doctor might not know what's wrong with you but you do know alot about this disease - which is why I would listen to your two cents worth.After you sit for awhile when you get home from work, and then start moving around again, does the stiffness and pain lessen or has it reached it's peak and stays there? When my fatigue gets real bad so that I have to lay down in the afternoon, I am more energetic afterwards but can't move cuz the AS feels so horrible. Go figure! I need to move a little all day but it still just gradually gets worse.

Mickey

Hi Wayne - so does the doc think that the Indocid is helping you in the morning and then wearing off as the day goes on? Your schedule seems to be the norm for me. I am going to bring the responses to my rheumy and try to get him to accept that this too is AS. He is fixated on morning pain and stiffness.

Mickey

Jen - On the mornings where I have slept soundly - usually on my methotrexate nights - I wake up stiff, bent over and in pain too. But the nights where I toss and turn and get up a couple of times then I wake up limber and nearly pain-free.Like you, my ankles are giving me fits. Good luck - hope your week continues to improve.

Mickey

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



Beauty is in the eye of the beholder...Behold the beauty of Orca Art

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







Beauty is in the eye of the beholder...Behold the beauty of Orca Art

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

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

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).