Rheumatoid Arthritis Morning Stiffness
Do you get the Rheumatoid Arthritis morning stiffness question?
Does your rheumatologist ask you the morning stiffness question at every visit? Many doctors use this as a measure of disease activity. They ask, “How long does your morning stiffness last?”
My first RA doctor did ask me about morning stiffness at every single visit. I had no idea why I was being asked. Of course there was a long list of important questions that RA doctor never asked, such as whether I experienced RA fevers.
Until recently, the American College of Rheumatology considered the morning stiffness question so important that it was used as part of the diagnostic process. The newest RA diagnosis guidelines do not give morning stiffness a central role. There is a point system based upon joint symptoms and blood tests.
Is morning stiffness of Rheumatoid Arthritis like morning sickness?
Some Rheumatoid Arthritis patients have morning stiffness, but for others stiffness is not limited to mornings. For me, stiffness has always been the same all day: bad. After a couple of minutes in one position, it’s tough to move. Some days it’s like I’m in concrete; other days it’s more like cookie dough.
After I met a few more patients like me, I started to wonder, “Is Rheumatoid Arthritis morning stiffness like pregnancy morning sickness?” Some women are sick to their stomachs all day. Some are worse in the morning. Some don’t have any morning sickness – but they are still pregnant. The same RA doctor I mention in my last video, Doc Space Heater, wrote in my chart that I had no morning stiffness at all because I insisted that it lasted all day.
I’ve said before that my joints didn’t read the books. I did not rehearse at all for this job of professional patient. I’m just taking it one day at a time and the only thing I know about my RA is what I live with. Thanks for telling me about yours.
What about you? Do you only have morning stiffness in the morning? Is morning stiffness an accurate gauge of your disease activity?
Recommended reading:
- Rheumatoid Arthritis Fevers
- New Criteria for Rheumatoid Arthritis
- 20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me
Like you Kelly I experience “morning stiffness” all day long…some days it eases a bit but drive anywhere and get out of the truck and I look like I am 100 years old, and that could only be a 10 minute drive! My dr doesn’t ask about it much, mostly asks where it hurts….I liked your analogy to morning sickness and pregnanancy…we may have/or have not morning stiffness, but we still have this darn RA!
My new doc has never asked about it ever. After almost a year. This is definitely the smartest doc I’ve seen so that’s making me wonder about it’s value as an indicator. Of course, we also don’t take temperatures… ?? Yeah, it only takes a couple minutes – I had to laugh when someone told me it would happen in a couple hours. LOL. :O
I’ve had PERPETUAL stiffness since the first morning I woke-up with RA ……
it is true it takes much more time to get moving for the day but I think, for me, it’s a combo of waiting for the medicines to kick-in and just getting through the initial morning movements and seeing which joints are going to work that day……
now many days I have to lay back down depending on the fatigue…pain…
I was never a morning person to start with:p
I was a morning person like a rooster, jen. But, I’m same as you now so that didn’t help me. If that makes you feel any better? 😛
I was diagnosed easily with positive ra factor and ccp antibody over 250 but it wasn’t until about a month later that the stiffness really hit. I’d wake up in the morning feeling like someone had wrapped me in duct tape. If I had to get up in the middle of the night I had to use a walker. Before I got on a bio my stiffness was like a heavy fog, barely breaking up for the day then rolling in again during the early afternoon.
Yes, I don’t think it was my first symptom. I think I probably scratched my head & gave the wrong answer if I was asked about this way back when. But, along w/ fever & fatigue, it’s a permanent resident now. Did you ever go out in the afternoon & then get kind of stuck trying to get back before it was too bad? like Cinderella? lol 🙂
I can so relate to the stiffness, which for me, sets in the moment I stop moving a joint. So tired I must lay down and let my muscles rest. Then, especially my knees, sort of lock up and it’s quite painful getting them moving again. My last Rheumy asked that question at every visit. I never knew how to answer the question ‘how long does it last!’ I actually began to dread being asked, on my way to her appts.
New Rheumy & staff have not once asked me that rediculous question in 3 years! I’m very glad it’s ‘disappearing’ from the practice.
SAME here!! Jana, I could have written that (except my new rheumy is only 1 yr). I would dread it too & then sit there and wonder what the right answer was supposed to be & say that it lasts all the time. Probably wrong answer. Haha.
I, for one, am glad that morning stiffness had been considered in my first appointment with the rheumatologist during which I was diagnosed. However, I thought it important enough to tell her – “but anytime I stay in one position too long, I get stiff all over again. I have to try to stay moving somehow most of the time.” Maybe she even asked me if I were stiff at any other times during the day. I honestly don’t recall now.
Thankfully, in my drug-induced as-close-to-complete-remission-as-I-think-I’ll-get state, I do experience much less stiffness overall, morning or anytime.
I, for one, am so glad to hear that you are feeling pretty good. Isn’t the e-patient event about a week away?
I wrote the post late at night & I should clarify – I didn’t mean to imply that stiffness itself is not a good thing to consider w/ diagnosis. I just haven’t found many RA patients who have it only in the morning. Some docs diagnosis by a checklist & patients giving a “wrong” answer are out of luck.
I sometimes get morning stiffness. But I also get stiff in the evenings, or whenever I sit for too long. My doctor usually asks the question every visit and I don’t always know how to answer it.
What does the doc say when you tell him that?
Hi, l used to have morning stiffness from when l got up 7am ish till around 11am then joints free until about 3pm afternoon, l was busy with making kids supper and doing chores,did not want to sit down, as it was harder to get moving. that was along time ago now,that was before all my meds kicked, but now l have stiffness if l have sat too long, it can different from day to day.
Some of my initial symptoms of RA were rigidity in my fingers in the early morning or upon waking. This wasn’t stiffness, this was my fingers wouldn’t move until after I could break it free with my other hand. Once I started NSAIDs and steroids I hadn’t had anything like that since. Most mornings my joints just hurt and have a tingley/pain sensation in them but with some stiffness. When I have flares, I notice that my hands and knees get stiff during the day if I don’t move for a while. The joints aren’t immobile, but upon standing I have a funny gait for a few steps until the knees loosen up. My finger joints are slow and sluggish to move as well. It makes it hard to type or write with any speed.
I don’t think the joint stiffness question is a bad question for a rheumatologist to ask. Joint stiffness is a hallmark of RA. In RA you have synovitis. The synovitis results in swelling and inflammation of the joint. The swelling and inflammation cause joint stiffness. For most people the greatest period of immobility is while you’re sleeping so it should follow that if joint stiffness increases with inactivty that your greatest time of stiffness should be upon waking. Which has been classically reported by patients and classified by docs as morning stiffness.
While morning stiffness serves as a general guideline, people are people and we’re all variable. With a disease like RA it is very hard to put a box around all of us in how the disease affects us and progresses for us indiviually. Good docs should and do know this.
Perhaps they should add additional questions like:
Do you have morning stiffness?
How long does it last before it gets it’s at its best for the day?
Do you continue to have stiffness throughout the day?
How long can you remain at rest before a joint stiffens?
Doc Space Heater sounds like a complete mess. He needs to take a logic course. To write that you have no morning stiffness since you have it all day is just stupid. He should’ve wrote that you have morning stiffness that doesn’t go away. To have stiffness that doesn’t go away is a big time indicator that you had some serious inflammation going on. Glad you broomed him fast.
this is a great post kelly – a question that is always asked but one that is a particularly ‘grey’ area to me. How can they gauge the disease activity on this? As you say, it’s different everyday, and mostly the stiffness doesn’t really go away – and some days it doesn’t go till midday…then other lucky days walking downstairs and making a cuppa can ease it but it then returns later in the eve…. and yet the docs rely on it as they seem to think its a pretty accurate score of how your disease activity is doing..totally confusing to me..
Not sure how reliable it is as an indicator. Here’s some tricky logic: So if morning stiffness is a reliable indicator and it’s completely subjective, then why can’t pain also be considered reliable measure as a patient reports it? Wait – I wonder if stiffness was removed from the diagnosis criteria because it’s too subjective.
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During the two years that I suffered with, RA before I was diagnosed, the mornings were the worst time of day. I could barely drag myself out of bed, much less make the kids lunches, get the baby dressed and into her carseat, and drive the other three to school. This was our morning routine that I had kept for many years with no issues, a lot of times even after working my regular 12 hour night shift. During the ten years that I worked nights full time and raised my kids I had more energy than the two years that I was suffering from undiagnosed RA.
My kids didn’t understand why mommy couldn’t get out of bed, or make their lunches, or dress the baby, or carry the baby to the car, or buckle the baby in the carseat. They were frustrated with being late for school and doing all the things I normally did. I tried to force my body to cooperate anyway, with little success.
Now that I know why I have so much trouble moving in the morning we have changed things around. My husband brings all but one of the girls to school and they all make their own lunches now. The older girl gets her sister dressed and into her car seat and we go. Usually I soak in a very hot bath for as long at my toddler is interested in PBS morning cartoons. Only after my bath am I loosened up enough to attempt to do normal things like eat breakfast and take my meds.
After that it’s like what kelly said the: difference between concrete and cookie dough. I’m still in pain all day but I can move.
Good point, Ruby. The hot bath / shower helps a lot of people loosen up – I wish I took time to do it more – it always helps.
Like so many of you, I get stiff and sore every time I stay in one position, but I think the worst has always been in the mornings. I have long dreaded mornings–I live with a cheerful, noisy morning person, but I can at times barely function in the mornings because of the pain and brain-fogginess, and it seems to take forever to accomplish the simplest tasks. I do feel like I’m better since I’m on RA medications/treatments, unless I have a bad flare, but the stiffness and pain never totally go away. I seem to do a little better if I break down my sleep into shorter segments at a time, with awake time and activity between them, but I’m not sure this is good for me overall. I also have sleep apnea, so I’m sure some of my symptoms are related to oxygen levels in the body, especially when I don’t use my machine or it doesn’t stay on properly. Does anyone else have brain fogginess in the morning that you feel is related to the stiffness?
Sunny, I don’t know much about apnea, but I wonder about fogginess – can it be related to how well you slept?
I don’t sleep more than 3 or 4 hours at a time these days, but I’m good at getting sufficient sleep overall. Which means I wasn’t able to answer my rheumy well on the morning stiffness, since it was hard to answer which of my “after you sleeps” counts as “morning.” Driving brings the worst stiffness for me. After an hour of solid driving, I get out of the car like I’m 90.
Yes, driving is hard. I can think, “Well, my hands are not that bad right now.” Then I get in the car to drive and 5 minutes later, my hands are screaming from grasping the wheel. And stiff of course. We should all be driven w/ chauffers! 😉
“Morning Stiffness” for me lasts all day long. It is much worse in the morning but it stays with me all day and then gets notably worse in the evenings. If I sit for too long It gets worse, stand for too long the pain gets worse, walk for too long…pain. There is no winning when it comes to staving off the stiffness. I agree with Kelly, sometimes it is like being stuck in cement, others like cookie dough. I think like anything it waxes and wanes but it is always there.
LOL. I’m glad we could relate to the cookie dough. It seemed funny late last night.
For me the “traditional” morning stiffness of RA is fairly constant and worsens when I’m physically inactive. Most days my muscles are stiff and sore and my joints ache when I use them but tighten when I rest. Deciding whether to move or rest is sort of like chosing between Sylla and Charybdis.
Hi Donna,
Your saying, “worsens when physically active” reminds me of my Usage Principle – have you seen that – click here? I had to look up your Greek references lol.
I’m so confused right now. I’m in the process of trying to figure out what is going on with my joints. I can’t say as I have morning stiffness but my pain wakes me up or I’m wake with it. It is a it’s most severe in the a.m. I’ve been having pain for over a year in my hands and feet with swelling and reddness. The pain can get so bad that I feel like I’m walking on broken bones or that my hand is broken. My arms have “frozen” is the only word I can say they hurt so bad and it was like the muscles forgot how to move. When they finally did unfreeze they were and are weaker than before. My right hand knuckle is already deformed. But I don’t have the all over pain that most of what you all have (and have read of other sufferers of RA have) my pain is constant in my hands and feet, now my hips and knees hurt,but my other joints will hurt somedays and then be fine the next. Even my neck hurt one day but now feels fine just week.The NSAIDS did nothing for my pain. Is this RA or a different type of RA? I’m sorry to be so long winded but I’m confused and scared wondering what the heck is happening to my body.
Hi Deirdre,
First, don’t worry that we aren’t all the same. That’s how RA is. And even your own RA will not stay the same. I don’t think all patients have “all over pain” – For example, I have RA in every joint. But for me that’s not “all over pain” -just pain in every joint. I’ve met those w/ RA in only 1 or 2 joints. They are usually older.
Its also normal for a joint to hurt & then feel a bit better – that might have been an initial flare in your neck joint. and now the RA is settled there, but not in a real flare. No way for me to know – I’m just guessing with it as an example to show you how it might fit together. I know it’s confusing what you are going thru.
Have you read thru the RA Map yet – click here?
Thank you for replying I’m just worried about what is to come. I about to turn 30 and it seems like I wake up with a new pain or ache each day. The pain has been so bad in my feet that I’ve had to go home (not sure how I managed to get home) I just couldn’t function. I’m always exhausted. I’ve been started on prednisone and it seems to be helping a lot but I still have days of pain. I’m just afraid I’m going to wake up one day and not be able to move. I have not looked at the RA map yet. I will now though. THanks for the help and the awesome website!!
Deirdre,
I’ve been diagnosed for almost a year now, with vague symptoms reaching back 15 years and severe symptoms over the last 18 month. You will start figuring out your unique version of RA. It just takes some time to begin to learn your patterns of pain and fatigue. And then once you think you have it down, RA changes the rules! But you will learn to at least do better with that unpredictability.
Like you I have chronic pain in some joints and then pain that just wanders. RA says: “Hmm, I like elbows this month. Next month, I’ll try the feet.”
Kelly, interesting idea about the initial flare of a joint and then RA settles in but not at the same intensity as the first flare. Looking back, I can see that pattern with a lot of my joints. Once they flare badly, they are never the same, even when I’m feeling halfway decent.
Just what I noticed from reading thousands of comments & w/ my own RA.
I agree with you that one can notice a pattern with one’s individual RA; but also the pattern can shift. So, over time, the RA is more or less aggressive or active than before.
I have stiffness that can last all day, or I can loosen up fairly quickly. On rare and blessed occasions, I don’t notice it once I’ve been up for a while. And yes, I gel up after sitting too long, especially in the evenings. I often tell my husband in the evenings, “I have to do this now, because once I sit down I’m not getting up except to go to bed.”
Over time I think you start to figure out your own patterns. For me, a marker of disease activity is not how long the stiffness lasts (although the all-day variety is a bad, bad sign)–rather it’s how severe the stiffness is when I first wake up. Before MTX and Humira, I would have mornings where I was so stiff and in so much pain that I would spend 15 to 20 minutes in bed moving joints one at a time to loosen them up. For some joints, this has meant using my hands (once I got one arm unstuck) to manually work the joint since my muscles couldn’t make them move. Knock wood, I’m doing better with stiffness, but still haven’t seen a major drop in my overall pain levels.
Sorry, that last one was meant to be it’s own comment, not a reply. I hit the wrong button. Morning brain fog.
Sounds familiar. 🙂
How often I say “I want to get up. Really.”
Deirdre, this actually sounds like my early RA, except my feet didn’t hurt that way, but my hands sure did, and sometimes my elbows and shoulders did. I had some heel pain on walking. But the worst pain in the beginning for me was in my wrists and hands. That changed after medications, although now, over 10 years later, I’ve recently started to get some of that initial type pain back in the backs of my hands and fingers, but not to quite the same degree. But I had that 90-year old feeling even before the pain started, still have that although it’s different and yet the same and yet worse all together. As Kelly said, the nature of the beast (or is that Wren?) changes over time.
I guess I was just being naieve thinking this was the worst it was going to get, now I see that it can get much worse. It is kinda depressing. I’m on prednisone right now to get my pain under control (working pretty good) then my rheumy said the next visit will be talking about getting me off the prednisone and on to “other” meds is all he would tell me. He’s very hard to read, or as I like to call him a clam full of botox. It’s just been a crazy year I had cancer and this pop up at the same time.
Deirdre, I love that name! Anyway, I didn’t mean to mislead you. In a lot of ways, it does get “better”. The intensity level of the pain does get “better” for many folks with RA, as the nature of the pain changes. What gets harder later on, although you do get “used” to living with it, is just the chronicity of it. Some do get very lucky with the drugs, though many only get “somewhat better”. That really super intense pain and throbbing and burning will change, hopefully to be gone, but if not gone, then it usually just changes character. Other folks out there might be different but talk to the long timers and see what they say. Not all hope is lost! But learning how to re-adjust is necessary for most since for most the drugs don’t halt the disease altogether, just slow it down.
You didn’t mislead Chelsea I appreciate the info. The more I get the better I feel. I really try hard to stay positive about what is happeing and what will happen in the future. As you can tell I was not doing so good this morning 😉 I’m better though.
Hi Dierdre and DEAC — Kelly and I both have said that. The one thing you can count on with RA is that it will change. I have very little morning stiffness these days. If I get stiff, it’s usually later in the day when I’ve been sitting for too long. But in the olden days, when I was first diagnosed and for that first eight years or so, I usually DID have morning stiffness, generally for about an hour or until I could get into the hot shower or bathtub. I’d still hurt afterwards, but I would be able to move a little easier.
Dierdre, RA pain hits everyone a little differently. Mine used to be much like yours, in that it moved around. One day I’d have a bad flare in my right knee. The next day it would be my left shoulder. Flares could last anywhere from half a day to four or five days, and they varied a great deal in intensity. The only consistent, day-to-day pain I had was in my feet. The bottoms of them hurt all the time, from the moment I got up in the morning until I went to bed at night.
RA does change. Mine went into remission for roughly six years, then came back. When it did, it had a different pattern, a quieter one. I no longer have the constant foot pain, but my hands and wrists have low-grade pain all the time. I also rarely have a severe flare in my other joints — and believe me, I’m grateful for that. But I’m also aware that this pattern can change anytime. It’s my hope that with the meds I’m on, the disease can be slowed and perhaps one day it will go into remission again.
Rheumatoid arthritis IS scary. But it’s not the end of the world. You’ve come to the right place to get some really good information about it — Kelly’s blog, here, is just about the best you’ll find anywhere.
Oh, and hi Chelsea, too!
Is there any literature out there discussing why they dropped the morning stiffness criteria? I agree, I do not think it should be used to guage disease activity. Medicines make it better than it would be without the medications, but doesn’t mean that the disease isn’t still damaging our joints. I too think it is difficult to articulate a simple answer to that question. I am slow to get going in the morning, hard to walk for a few minutes/do the stumbling thing, hard to get the hands and wrists to lift the heavy coffee pot, brain fog etc. Then finally get a little better for a few hours after the meds finally kick in, but the stiffness/gelling and pain get worse, worse, worse as my day goes on and I am totally wiped out after work. If I have a lot to do on days off, even if it’s just a lot of driving, the same thing. There’s lots of nuances within those nuances too. I too hate that question by my doctor. They do however take weight, blood pressure and tempurature at every visit. Sometimes comment on warmth in the joints. I know I had very hot hands before I got diagnosed as had a few people comment on that, though I guess there not as hot now! 🙂
No, I haven’t found anything. I’m wondering if it is due to the fact that it’s a subjective tool. Makes me breathe a sigh if that’s the reason since “pain” is also subjective & the most significant symptom. And one you know I don’t think they fully grasp.
My current doc does has never asked me about stiffness or morning stiffness.
Perhaps they asked enough patients and decided it IS too subjective, but I’m guessing they used to think it was a good objective symptom to look at. Again, just guessing. I would love to have heard the conversation on that one.
Indeed to have been the fly on the wall. So, shall we think ahead a few years to what they “realize” next & how we might dare to contribute “information” toward that? :O A guess on what the next change will be?
Let my brain “gel” on that for a while and I’ll get back to you on that one! 🙂
I had morning stiffness for over an hour before I went on the good drugs. Then again if I sat too long in one spot, getting up was painful and it would take a few seconds to feel ok. (Which made going to restaurants embarrassing as I would get up and walk like a 90 year old.)
Then at night the stiffness came back very heavily and I was always glad to get to bed.
Im on Enbrel, methotrexate, plaquenil, Celebrex and pred when needed now, and my morning stiffness is just the usual 50+ year old’s achy stiffness.
Thanks, Kay.
Several years before I was diagnosed, I had trouble walking when I’d get up in the morning. My feet were so stiff and sore! That is still true when I first get up, I don’t want to touch the floor! After I’ve staggered to the bathroom (holding the walls for support) and had a hot shower it does get loosened up. Sometimes it is pretty good. Sometimes it takes a couple hours before the good comes, or mayabe not at all. Then things go downhill as I get tired. If I sit down, it will be hard to get up and this is what old people notice. (I look like them!) And my hands don’t grip well or manage fine-motor things.
On bad days, I notice that my balance seems affected too, and it takes a lot of thinking to walk. That makes everything harder. More recently, I’ve also noticed that sometimes my hands or knee joints feel like they have acid poured in them—-they burn!
My Dr. does still ask sometimes about morning stiffness, and thinks that if it is less than 1/2 hour it is good.
I think that is only a small part of the puzzle, and one needs to look not only at that, but at all the other pieces and the whole picture too!
I agree with you, it is a very small part of the puzzle when I hear you tell your other symptoms!
For me I have all day stiffness. It’s not as bad every day, but when I’m stiff in the morning, it can last all day.
I have always wondered why they ask me this question and why I have to fill out other paper work with questions that are related to this one. I have morning and evening stiffness most days. I think that it is worse in the morning and at night. With this being said I think that I also have stiffness if I sit in positions for a period of time. Interesting question. I am amazed with this website, love the commentary, the questions and information that all of you are contributing.
Thanks for sharing, Amy. 🙂
I always hated that question because I am always stiff if I am in any position for more than 5 or 10 minutes. If I hold a coffee cup for a few minutes I have to unravel my fingers. I tell the dr. that it hits every morning but will loosen up once my meds kick in but it really never ever leaves me all day. That is such a hard question to answer because it is asked with the assumption that once the initial stiffness lifts that it should be gone for the day but it never ever leaves. I dread that question more than any other question.
Cynde, I’ve been stunned at how many of us don’t really like the question. You are right about the implication that the rest of the day is “more normal.” The docs who did ask me this did not like my reply. Seemed they thought I was being provocative. Wow to how many of us have stiffness all day. And if meds are what improves it after morning time, then is that a fair measure? What about those who take meds at night to wake up less stiff? Should that count the same?
What can you take at night to wake up less stiff???
Some patients take a small dose of prednisone for that purpose. Otherwise, a hefty dose of NSAIDs could have that effect.
Well I never have morning stiffness – or any stiffness like you all describe. Lucky on that front! Have been diagnosed a year ago. Mostly what happens to me is I can be fine in the morning then in the late afternoon a joint or a couple of joints will get sore and by evening they can escalate to the point of feeling like they’re broken or dislocated – with swelling sometimes but not all the time. Also it’s not symmetrical most of the time. Will usually happen in one side, then the other a week or two later, and often in differing intensities. Have had high anti-ccp readings, positive RF & crp levels starting to climb. So far the only medication that works is prednisone and the symptoms are coming thicker and faster. Today I can’t move my right shoulder because of intense pain. Kelly your blog has been a great help to me – thank you so much for keeping it!
Kathy, that’s interesting that you don’t have any kind of stiffness yet. Technically though, I think I’ve read somewhere that the question is supposed to be asked as this: how long does your morning stiffness last before it gets to its “best” for the day. I think this is because it has to take into account already damaged joints that are going to have a hard time moving, but don’t hold me to that reason.
Thank you, Kathy. If the symptoms are coming thicker & faster, I hope your doc is attentive to that and treats you appropriately. The delay between the 2 sides for the symmetry is still considered symmetrical. It doesn’t have to be at exactly the same time – just both joints affected to be considered symettrical.
Just had a drs appt..he asked me about morning stiffness..I didnt know what to say!!..and like most of you I have it all day long…its very frustrating and as I walk this path of R.A its hitting hard on my spirit…theres just no end in sight!
Kim
I hear you, Kim.
Hugs to you, Kim. Hang in there.
I think that it is the NSAIDs and Prednisone that help with the stiffness and perhaps some of the gelling the most, regardless of DMARD, although I don’t take a biologic so I can’t say about that. For those not on prednisone, this might be the difference. For those on NSAIDs, it may be the NSAID you’re taking is not a good one for you and you may need to try another one, perhaps a 24-hour one. Even then, I’ve noticed differences between 24-hour ones for myself, and it does change over time with the RA. So experimenting with different NSAIDs, trying prednisone, and playing around with the timing may be what some RA’ers need to do – to find the best combination for themselves. But then you have to consider the potential side effects and what risks you are or are not willing to take in order to be able to get to a level of functioning that “works” to get through every day. And I say “works” because always as one tries to balance “works” with tapering or trying to minimize side effects is where it gets hard. I can try to function at a lower level of what “works” for a while, but the pain and gelling, etc. always get to me and I can’t seem to get off the prednisone entirely. It’s exhausting to just think about!
I added Plaquenil a few months ago, and thought hey, maybe this is what will help. Even had a few weeks (during very stable weather) where I didn’t have to wear my splints to work. However, that didn’t last and I have inflammation, pain and weakness and stiffness increasing again.
Good morning, Kelly and all RAW readers!
My first symptom was stiffness; painful, terrible stiffness that came upon arising and after sitting for even a short length of time. The stiffness drove me to the Rheumatologist.
Eight years of treatment later I still have it, but primarily in the morning. I need to lean on something (wall, bed, door, chair) to make if from my bed to the bathroom when I get up. It lasts about an hour, then wanes. It returns if I sit anywhere for too long. It is MUCH better than it was at disease onset. While I’m on here I have to say how excited I am that Rituxan seems to be working for me. It’s been 2 months today since my first infusion. In the last two week I was able to lower my daily prednisone dose to 4mg without an increase in stiffness.
Lastly, my MD has not asked me about stiffness for years. However, he comes out to the waiting room to get his patients for the purpose of watching them walk into the ‘inner chambers’. I like that!
God bless you all!
Phyllis
Hi Kelly – I’d say my morning “stiffness” (how about “paralysis”?) is as much about the pain of moving as the inability to move. My husband now drives me to work every day because I simply can’t walk enough to take the train and can’t drive because my upper arms are glued to my side. By end of day, I can walk enough to train it home, but just barely . I like the concrete (AM) vs. cookie dough (PM) analogy, but it never goes away so I wouldn’t ever call it “morning stiffness”. I appreciate your website Kelly, it gives me hope. Went after women’s day (in a rational way), but they never got back to me. I get tired of all the people I meet who say “oh, I have that!”, while their riding their bikes, or cutting things with scissors, etc. There needs to be some truth told here, that “arthritis” is merely one of the many secondary characteristics of this disease – using that word to define the disease is very misleading. Be well,
Judy
Thanks for letting me know Judy. I don’t think any of us have ever gotten a letter back from Woman’s Day. It does seem like they really believe they are right. You know what I say sometimes? “I can’t back down. My RA won’t let me. I wish I were wrong, but I’m not.”
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Some of these comments have really cheered me up after a particularly bad night and morning (lala) totally self inflicted by trying to work like a non-RAer for 3 days. Grr.
I have homed in on the bathroom-trip comments in particular and wondered if anyone else is monitoring their loo for the surviving-after-lots-of-flumps syndrome! I find when my knees and hips are being stubborn that the only way to go (literally) is flumping … and my poor husband has repeatedly reminded me that this will eventually take its toll on the WC. How long til it heads through the floor to the living room below, giving me a bigger flump than expected …haha!
You are all amazing people. Big hugs!
Jane, you are so funny. Thanks for the laugh!
My morning stiffness before going on my DMARD lasted 2 hours +. But I still can barely walk to the bathroom, it just lasts longer without my DMARD. I still get stiff after sitting, just less so…but it still stinks, so I don’t know how these Doc’s can really judge how we are doing…by just a random observation like that. I agree with the other posters that the question should be re-worded…it is really very confusing to answer…When you feel pain and stiffness most of the time…how are you supposed to answer that one? I am always afraid, being Sero negative…that my new Rheumy will slap the “Oh it is probably just fibro” dx on me. He basically told me he was only going by my previous dx. by my old Rheumy. RA is so elusive and needs so much more research…I am starting not to trust any Rheumy to know all there is to know about my RA…depressing thought…
Susan, are you reading the e-Patients book with me? There is a lot of discussion on that Tab with the author also. He reads our questions. Your last sentence makes me think of all I’m learning from him. Plus, let me say it is sooo important to find a rheum doc that you think is smart. That’s the reason I like my current one. There’s no special treatment or warmth, but this is a smart RA doc who reads the news. Hope you can find yourself one!
Dear Kelly,
at first: It is great blog you are running here. I really do learn a lot about the patient’s point of view of the disease, and that is very helpful for doing my job well.
But I have to make a remark on this post, on the new 2010 ACR / Eular classification criteria for rheumatoid arthritis, RA diagnosis and disease assessment. Keep in mind that the new ACR / EULAR criteria are criteria for RA CLASSIFICATION, not criteria for DIAGNOSING rheumatoid arthritis, and not for assessing disease activity. (I know you are conscious of that, Kelly, you have already written about that in another article, I know … https://www.rawarrior.com/new-criteria-for-rheumatoid-arthritis/)
I have a feeling that this “softening of terms” is the crunchpoint when discussing whether (morning) stiffness has to be part of diagnostic criteria or not, or if it has to be part of assessment of RA activity. It’s just one single criterion among a wide range of criteria.
Classification of a disease is aimed at making only very small mistakes within a group of individuals – a crucial criterion for the conception and design of a scientific study (for example for a study of treatments designed to prevent joint damage in rheumatoid arthritis). Without uniform and evaluated standards, the comparison of different studies is strictly impossible. And that is what the 2010 ACR / EULAR classification criteria are for.
For an individual, in the case of a single patient, rigid classification criteria can occasionally lead to a false positive or false negative result. In the end, adequate medical diagnosis (and estimation of disease activity as well) is a highly individual process that does not follow strict rules and must take far more into account than a pure sum of the symptoms. Clinical diagnoses can only rarely be made based on formal criteria. Indeed, a computer would be able to manage this, being, if possible, more exact than a diagnosing physician!
So the new ACR / EULAR classification criteria may be an important SUPPORT for making a clinical diagnosis in any case. But they ARE NO diagnostic criteria!
For example, for general practitioners in Germany, and for German orthopaedists and other health workers here in this country the same criteria remain in place for suspicion of RA. And according to “DGRh guidelines: Management of early rheumatoid arthritis” (http://www.dgrh.de/pleitlinien.html) morning stiffness still is a crucial part of those criteria of the German Society for Rheumatology (DGRh):
– morning stiffness lasting more than one hour
– two or more swollen joints
– the detection of rheumatoid factors (RF) or certain ACPA (anti-citrullinated protein antibodies) can confirm the suspicion of RA
Best to you all,
Tobias
Thank you for emphasizing that point about research standards. Yes, it has been mentioned here a few times. Here in the US, there are not uniform standards for diagnosis criteria so I assume that would be the eventual goal when I read discussions about this problem. Many doctors seem to rely firmly upon the 1987 standards which I wrote about a lot last year. My greatest concern is the lengthy diagnosis period and the delay in treatment. Second, it is that some doctors still use a lax pyramid approach to treatment while damage mounts in patients who are undiagnosed or under-treated. My concern is for patients foremost.
I will clarify my position on morning stiffness since I was a bit facetious in the blog post: I think doctors should ask lots of questions so I have no problem with asking about any stiffness. However, many doctors robotically ask, “How long does your morning stiffness last?” since that’s how they were trained to ask. If you have looked at the many comments here & (many on Facebook as well), then you can see that patients tend to have stiffness all day long. The way that the question is traditionally asked does not provide a reliable indication of disease actiivity any more than a Rf count does. Patients, as you can see here, are not sure what to answer. In turn, doctors can easily make wrong assumptions about the answer because of the closed nature of the question.
Dr. Stolzenberg, if it is part of Classification for RA and studies and NOT for diagnosing RA or assessing RA disease activity, then why is it asked at every visit for patients already diagnosed with RA? I agree with Kelly, that wrong assumptions about disease activity and treatment might be made based on how it is asked and answered, especially if patients don’t articulate the answer well.
I know in not-yet-diagnosed patients, it might make a difference in diagnosis, as shorter duration of stiffness might point to OA or something else. But doctors do tend to use it to assess continuing disease activity in RA – is this correct to do? And do any studies address the change in stiffness in untreated and treated RA over time or by type of treatment? I’ve never seen any directly addressing that aspect per se.
Sounds from all these posts that morning stiffness is really joint gelling that happens whenever RA’ers sit still for any length of time, and sleep is the time when we are still the longest. Gelling also seems like a better description than stiffness, at least for me.
Seems like maybe a better question to ask patients is “Do your joints feel like they gel after you haven’t moved them for a while?” followed up with “How long after you haven’t moved do your joints gel?” and then “How long does it take to get your joints moving again once they’ve gelled?”
I’ve had sleep problems most of my life and finally figured out that when it’s treated and I sleep through the night I wake up much more stiff than if I’ve been tossing and turning all night. Of course not sleeping is a problem too, a little catch-22, but I “prefer” insomnia to the stiffness I wake up with after a solid 8 hrs. by 10x.
Taking NSAIDs before bed does help. Plaquenil @600mg/day helped me more with gelling than MTX, but MTX has kept things in a more steady state (consistently crummy is somehow better for me than sometimes really really bad/ sometimes kind-of-sort-of-maybe-ok). The new rheumy has me cutting back on plaquenil to 400 mg and I’m noticing the difference. So wish I could take predisone, that did the most for gelling, but I value my sanity above all else!
Samantha, I have a question about your last sentence. How much prednisone did you take when it made you feel crazy?
It wasn’t much, Kelly. I just can’t tolerate prednisone at all. I get panic attacks almost immediately.
1 word: BULLSHIT.
I started catching on, so when my RA was worse – I would say 2 hours. If it wasn’t as bad recently, I’d say 1 hour, and so on. Once I realized my doc was using this as a gauge, I simply adjusted the time I told my doc… ridiculous that we should even have to think this way.
I don’t think you are alone at all in that, Michael.
Im stiff and hurt all day. It is not limited to just am hours.. I somehow wish for that, it would make it easier to deal with. With my son now dx’ed with JRA he is worse off in the morning but has a real bad 2 o clock flare that lasts till wee hours of the morning.. nothing that pain pills can help or anything else..
Shannon, I’ve been sad to hear about your son. I think thats the worst fear for all of us – our kids. Hopefully, today’s treatments AND TOMORROW’s will make a huge difference. :heart:
Do you think the leaving out of asking about morning stiffness may have something to do with the fact it is being realised that it isn’t only in RA you find it? In response to prompting by the charity formed to provide support for patients with polymyalgia rheumatica, the British Association of Rheumatologists has finally drawn up guidelines for diagnosis of PMR. Two of them are “morning stiffness lasting more than 1/2 hour” and “stiffness after sitting” – there are a lot of common points for the 2 diseases and they are both of autoimmune origin.
I’m sick of hearing even doctors saying “a raised ESR and CRP are diagnostic of PMR” given that 1. they’re pretty non-specific and 2. neither HAS to be raised in PMR. PMR is a clinical judgement made in the absence of certain blood markers. Everyone – including the experts – seems to be all at sea.
I’m like the Tin Man From the Wizard of Oz in the mornings. Extremely stiff. Most of the day I am like this until around 6PM or so. It makes me miserable, cranky, hot tempered and difficult to live with.
Ah! Morning stiffness. They should call it Stationary Stiffness. Like you, if I sit for too long in one place things seem to settle and it takes me a couple of minutes to get going again.
good word MaryK
I was asked the morning stiffness question a few times and I have to say sometimes. Sometimes I’m stiff in the morning but most of the time the stiffness gets worse throughout the day.If I sit or stand for long periods I get stiff. But mostly the stiffness for me is worse in the afternoon and at night. But my rheumy never asks me that question anymore, I guess when your hands are so swollen and red you can barely move them,that’s enough!
By the time I knew that RA had returned after what I thought was a respite of years, I had already accommodated to feeling really crappy in the morning for several years. I just blamed it on getting old, on my OA in my knees, of overdoing knitting when my hands would not open in the morning (so I BUT when I feared falling down the stairs in the morning, or the day I had to slide down the stairs on my butt in the morning because I could not walk down the stairs…I finally realized this was not old age…(I am 56…by today’s standards last I knew that is not old age) So morning stiffness for me, now that I am out of DENIAL…is pretty marked. I always feel like crap in the morning. The only time I have not felt ill, stiff, sore, and somewhat crippled in the morning was after a Steroid Shot and started 60mg prednisone…I flew out of bed the next morning like I was born again…but alas as we all know…that does not last…But it did give me insight into what I had been accommodating to, and it made me more aware of what I should strive for in my RA control…if there is such a thing. Now, is morning stiffness a marker of my disease activity? I really don’ know…But but what I do know is that now that I am weaning off the steroids…my general over all stiffness is returning, not only increasing in the morning but NOW also is occurring throughout the day…and also? I am definitely Frozen Cookie Dough…Joints just don’t want to move…especially my knees, hands, feet, and ankles…
Kelly, my rheumy doesn’t ask all the time, but my GP does. Shows the difference in specialties I suppose. My stiffness is like yours…all day, every day. If I’m in any position for more than a few minutes, I have a hard time moving again.
Some days my morning stiffness is just in the morning for me and other days its all day long. Once in a blue moon I will get lucky and wake up with no morning stiffness. My doctor did ask me at every visit until recently.
Have now been told I have palindromic rheumatoid arthritis, so i think this is why i don’t have morning stiffness. Today have stiff and swollen 3rd finger on left hand, and can’t move my right shoulder again. Left knee is bugging me too. These symptoms will all be gone in a day or two and will pop up somewhere else. This is a year now since starting methotrexate, and leflunomide added 6 months ago, and still can’t get off prednisone.
Yes like many of the commenters on this posting, my stiffness lasts through out the day and depending on which joints are involved is to varying degrees. Most mornings it takes doing some stretching excercises just to get out of bed. I also sit for long periods of time (several hours) during the work day as my work requires significant computer time. The pain and stiffness in my shoulders, wrists and hands, a lot of days requires using topical gels and creams (biofreeze, icyhot, etc). Getting up from my chair at work, I sometimes look like a 90 year old lady myself. To help accomodate this, I was able to have my work surfaces lowered a couple of inches ( I am vertically challenged as well). This helps maintaining the ergonomics of the right angle postures and the ability to use my desk to help support me in getting up from my chair.
On most days I try to use our fitness area to ride a recummbent back. Still nursing a knee that’s been scoped 3 times in the last year. The stiffness comes back with extreme vengence later after I have gone back to my desk. I try to remember this and get up and move as often as possible but work situations don’t always allow for these breaks.
While I answer the questions in the information sheets we are asked to fill out at each visit, I try to expand on these things as I have above when my Dr. discusses this with me. He at times has offered some stretching and other helpful hints that one are not either pratical in an office situation but at least he acknowledges this by answering me back.
One question that I was reently asked by the clinical trial nurse ( I am one of the particpants of the study that is underway monitoring changes in blood markers and if there is any predictive value to better point an individual partient to treatments, now that there are multiple medicine tactics – TNF, IL mechinisms, etc. This I believe should be added to the assesment that you fill out prior to each visit with the Dr. Since I answered that while I could perform certain tasks I had had to devise alternate methods to achieve success in mormal activities. Opening jars, doing regular household chores. Sometimes I said that these modifications were gradual and some I had not even been aware of until someone asked why do you do that that way. My response, well it’s less painful. I have a sweeper vaccum to sweeep kitchen floors. I use a steam mop to clean floors as it requires less effort on my part to achieve clean floors. I love to cook, but prep time to do so can be difficult – chopping vegetables is a good example. I have begun to buy a lot more of frozen vegetables that are already prepped and need only to be steamed in the microwave. I even buy pre-sliced apples for snacking. Yes this is more costly, but it still allows me to feed my family a decent meal after working all day. This actually lead to an entire discussions on what modifications I had made to do “normal” activities. The assessment questions ask you can you dress yourself with help, some difficulty or no difficulty. They don’t ask about the days that yes I put my clothes on by myself but chose a sweater to wear or slip on shoes so that I didn’t have to try and button buttoms or buckle some shoes. I plan on bringing this up at my next visit with my rheumy. That visits discssion topics is getting quite long. Should be an interesting visit!
Thanks for sharing so much good information Amy. I’ve thought a lot about how those kind of questionnaires could be improved. You explain the problem with them very well. Using them is so much better than not using them, but the questionnaires don’t make it clear about the many accommodations we make to make it possible to get thru a day.
I have stiffness all day, it’s not limited to just morning.
me, too Elizabeth. And most days, it gets worse all day as I use joints, not better.
Wow. I wondered about this “morning stiffness” stuff myself. True, it is difficult to get up and out of bed and I walk to the kitchen with hunched posture; but it often doesn’t go away, but instead, lasts all day. The questions should be used as guidelines. The goal of asking patients questions is to get to the heart of the matter. To interpret “my morning stiffness lasts all day” as “since there is no difference in stiffness from morning to later in the day, then there is no morning stiffness” is ridiculous, and it’s a lazy healthcare provider that does not have a vested interest in their patient’s well being. It often seems like they want to “fudge” the numbers, but I cannot fathom why.
I have a lot of morning stiffness that lasts through the day. It’s horrible and makes you want to cry when you get out of bed. My doctor won’t give me any pain medication, and is waiting for the blood tests to come back. But your right, there is only one way to describe it. BAD!!