Poll Shows Textbooks Wrong on Rheumatoid Arthritis Morning Stiffness
Morning stiffness is like morning sickness
Did you ever have a baby? Did you have morning sickness? Was it only in the morning?
Were you still pregnant?
Everyone recognizes there is a lot of variety to the morning sickness experience. Some have it for a few weeks, some have it for all nine months and others never experience it at all.
No matter what time of day a woman experiences nausea due to pregnancy, it’s still called “morning sickness.” The misnomer never really bothered me, even as a mother of five. Who cares if they don’t know when we’re nauseous? But then again I wasn’t sentenced to live with it every day of my life. Or have doctors measure the validity of my pregnancy based upon the length of time I spent over the toilet getting sick.
Rheumatoid patients want to tell it like it is about Morning Stiffness
We asked patients on Facebook a few weeks ago: “Are your joints more stiff and painful to move in the morning after rest, or later in the day after activity?”
Within an hour, there were 100 comments. At two hours, there were 200 comments. By the second day when we counted the data for the poll, there were about 350 comments.
This is without doubt a topic where patients have opinions that they want to express.
Now, on to the data!
Conventional wisdom about Morning Stiffness isn’t. Wisdom, that is.
Textbooks teach doctors and nurses that morning stiffness is a good indicator for diagnosis of RA and that the length of time a patient is stiff in the morning is a good indicator of disease activity. However, as our yummy donut chart shows, people with RA experience a wide variety of patterns with joint stiffness and pain.
- 17% After activity
- 23% Mornings only
- 25% All the time
- 35% Mornings and evenings are worse
Rheumatoid Patient Foundation providing patients a voice
This one brief poll question is an example of the great impact that can be made by presenting the patient experience alongside conventional wisdom, which is unfortunately often wrong with RA. When the experiences of actual people living with the disease differ from the “facts” in textbooks such as it does with morning stiffness, conspicuous swelling, and blood tests, the Rheumatoid Patient Foundation will enable the patient voice to be heard.
Morning stiffness was removed from the American College of Rheumatology’s Rheumatoid Arthritis diagnostic criteria in 2010. However, RA patients frequently report that some rheumatologists use questions like “How long is your morning stiffness?” as a measure of whether the disease is present or active.
Postblog: Those who’ve followed for a long time may remember Dr. Space Heater (DSH), discussed in this video – click here. I saw this doctor once; if you watch the video, you’ll know why. DSH was flustered at my answer to the morning stiffness question: “My joints are stiff all of the time.” I have to admit, I knew it was the “wrong” answer, but I wouldn’t lie. At least I feel better now knowing that one-fourth of people with RA have the same answer as I do. When I got the doctor’s notes, I saw my chart said I was “unable to say whether” I ever experienced morning stiffness. But then, it also stated that I’m “seronegative” in spite of a positive Rheumatoid factor and an off-the-chart anti-CCP test.
Recommended reading
- Rheumatoid Arthritis Morning Stiffness
- What about a Clinical Protocol for Rheumatoid Arthritis Disease?
- New Criteria for Rheumatoid Arthritis
- Rheumatoid Arthritis Swelling, Take Two
Yes! Morning stiffness is like morning sickness. It comes and goes. Thank you for the analogy. It fits so well.
I’ve had 2 rheumatologists in the 11 months since I was diagnosed. The 1st one ALWAYS asked how long my stiffness was in the morning. I had a hard time answering him actually. My newest (2nd) rheumatologist never asks me that question!!! Now in looking back over my experience with this disease (which is “inactive” presently—or is it?) I’m stiff off and on (depending on activity or not) all throughout the day. I appreciate this link so much as it’s given me more education than I’ve gotten from my practioners!!
yes, it must be based upon how they were trained. I’ve noticed the same.
Morning stiffness lasts all day for me, another misconception for us to deal with. Thank-you for this site Kelly.
Thank you too Stacee. 🙂
i think that the stiffness is a secondary effect – the issue is pain and inflammation. my osteo-affected joints are stiff whereas the swollen joints from RA are impaired by swelling and pain. why can’t the question be more specific rather than over-simplified? mobility is the goal so the focus should be around the quality of mobility. as a rule, i feel better when i am gently and steadily active even during a “flare-up”.
I agree. Inflammation is the cause – if it is bad, then stiffness & pain can increase with activity. And yes, mobility & function is the point!! We are not all the same – only some have flares, others have a steady disease state. They should find ways to ask the question better – maybe we’ll come up with something here to suggest for that.
When I am in a flare and have stiffness it generally occurs after I eat breakfast later in the morning, not first thing, and again late in the evening. This is the “wrong answer,” too – a lot of rheumatologists I’ve had over the years wouldn’t accept this. I like the morning sickness analogy a lot. It shows the difference between individuals, and also the difference in one individual when the disease is more active or less active. It never ceases to amaze me how our RA is so individualized – it’s definitely not a “one size fits all” disease!
I could elaborate a lot on this topic, but I only have a minute, but I must say that mornings are when I am at my best. between 1 and 3 pm things deteroriate rapidly, and I just spiral down the rabbit hole till I go to bed. NEVER had morning stiffness. I have been waiting for 3 months for my appt. tomorrow, and I will tell them exactly this. I used to give a noncommital “right” answer. No More!! I can do all my usual “old self” activities till 3 pm or so. By 8 pm, I need help getting out of a chair. AND, its not always only after activity……
Good for you mj. I think it will be hard but more of us will have to start telling it like it is. I hope you don’t get the eye rolls as others have said they have – I actually get emails saying “what do the want me to say?!”
This is so true Kelly, thank you. When I told my first Rhuematologist in Oklahoma that I have stiffness in the morning and then again in the evening he actually rolled his eyes at me! He also couldn’t believe that I experienced pain all the time. Like that wasn’t possible or something. Needless to say that was the only visit to his office.
Amy, after I had been to a couple of specialists (not rheumatologists), both concurred that I had an autoimmune problem. My GP said she would not send me to a rheumatologist in the Tulsa area, that I needed someone more into research. I was turned down by one rheumatologist because I had not already been diagnosed with RA (what is a rheumatologist for if they can’t make a diagnosis?). I finally got an appointment with a rheumatologist in OKC that made the diagnosis. I have been struggling with pain, malaise, and fatigue for years. RF- and -ANA so no one thought I could have RA, even though my mother died from liver failure due to RA.
Oh, my hands are stiff all day long. I wake up that way, and it stays with me. My feet are the same way. Other joints vary from day to day and hour to hour. Sorry, I got side-tracked….
thanks, Mike.
Dear Amy, I’ve sometimes wondered why I’ve had to endure those eyerolls too. And now I’ve realized its so that I can believe and understand what other patients experience when they tell me about how they are not believed etc. I’m so glad that you were a strong enough advocate for yourself that you did not return back there. It can be hard to do and good for you!
When first diagnosed with RA, hands were slightly swollen, stiff with little pain until late in the afternoon. Six months later, hands are painful and stiff all day but seem to get worse depending on what I have been doing. Late in the afternoon can be worse than early morning.
My RA started in my feet, 2 weeks later hands, now other joints have been making themselves known but they are sporadic. I started keeping a journal just to keep up with the constantly changing symptoms.
I’m glad to see I am not alone either! This is a standard question asked in the patient interview and is used as a tool to determine how the prescribed treatment is working. The doc is trying to hammer a square peg into a round hole. We don’t fit the disease model they have been taught. Perhaps this will give a voice and begin changing the perceptions about our disease process. Because I am a RN, I have established some credibility with my rheumatologist and I was believed when I told him about my symptoms, so he told me I have “atypical” symptoms and that the typical patient will notice a decrease in swelling within the first 2 hours of awakening. I just wondered how differently I would be treated if if I didn’t have RN tagged on the end of my name? There is truly a need for physician education regarding our disease.
Hi Mischelle, thanks so much for your reply. You nailed it!!
I have some morning stiffness but MUCH more stiffness in the late evening before I go to bed. Maybe because that’s when I sit down after a day of running (or, you know, limping) after three kids. I don’t know.
I’m hopefully going to be starting with a new rheumatologist here soon. I’ll be interested to know if he asks that question.
yes, let us know. I think its the same way with me – that movement just increases the symptoms because there is already so much active inflammation. Good luck w/ the new doc Erin.
Wow! Great information, Kelly! Pain and stiffness has always been much worse later in the day. I thought I was just weird. My last Ruemy had a form that I filled out at every visit, and it asked how long my morning stiffness lasted. I always scratched it out and wrote that I was worse in the late afternoon.
Thanks, Kelly
This made me giggle because I do the same thing! I hate those sheets. I’m always making all kinds of little notes in the margins. “On a scale of 1-10 how hard is it to walk 2 miles?” Well if I had to I could walk 2 miles and do ok but when I got home and sat down I wouldn’t be able to move for a week! Circling a 2 just doesn’t convey the same answer.
“On a scale of 1-10 how hard is it to open jars?” Umm I can’t open jars so 0? haha
Well said, Melissa. Whether its my own appointments or stories like yours I hear all day, I shake my head because it seems like they really have no idea. We are definitely changing that!
And, you make a great point that I know too by being a patient that’s NOT in any of the literature – that it only matters so much if we can actually walk down the block or open a car door or whatever because AFTER we do so, we cant do anything else for a while as we recover from it.
Well, now you know you’re not weird! My joints get worse all day & the more I do the worse I am. It is a very rare day with lower disease activity that I feel better later in the day – maybe a couple times ever that has happened to me. I think it might be more typical of medically “controlled” disease activity, which is also not too common.
So true!! Hadn’t been asked this by a doc in a long time and when I went lat time was asked it, I just gave him a blank state. Wasn’t sure how to reply bc I didn’t think after 30 yrs of this they gauged it that way anymore. I finally said all the time and he went on.
exactly right Linda. I get emails asking me about that – people say “What answer do they expect? What kind of question is that?” The divide of knowledge about the disease is pretty wide in some places. :O
I have been looking around on your site as I have tested positive for RA and ANA. I have my first appt. with a rheumatologist in two weeks and for the past two years I have had all sorts of issues including kidney and enlarged liver, fatigue, chest pains (feeling like I had a heart attack) as well as pain in my ankle, etc. Are everyones symptoms different? I am so new to this that I have no idea what to look for Im just tired of being tired all the time.
Yes, RA symptoms are different in different people, and different in the same person at different times.
Positive ANA and rheumatoid factor probably mean an autoimmune disease, but they are not specific. Anti-ccp is very specific for RA; have you had that test done?
Ultimately, it’s a clinical diagnosis by a rheumatologist. With lab test results and clinical examination, they can (usually) differentiate between RA, SLE (lupus), Sjogren’s, and dozens of other systemic autoimmune diseases. Multi-systemic diseases affect entire body systems, which accounts for the variety of symptoms and prevalence of fatigue.
Good luck with your appointment!
I am also in the early diagnosis stage. I have the same symptoms as you minus chest pains. Mine are in my back. I have had a fever with mine for almost a year I am on my second RA specialist and am actually going to another State for my next appointment. I have never been so frustrated in my life with doctors. For half the year I thought I was the Conductor of the crazy train when she told me my symptoms could not be RA. It was actually my allergy doctor who finally got the positive RA and ANA blood results my first RA doctor was looking for. He ran the tests again because he has known me for 15 years and was seriously concerned about my health. She actually said there must be a mistake only my lab knows how to get accurate results. I personally think she did not want to admit she was wrong.
I’m stiff in the AM and it ebbs and flows during the day. But what REALLY kills is when it’s a bad RA day, is I wake up with the world’s worst HANGOVER (and I don’t drink). I’m sick, slow, and stupid. I hate this more than the pain, which also can be significant. But I can work through the pain, but not the hangover from hell….
I like that description: sick, slow, and stupid. Unfortunately, I recognize what you mean. What I hate most is that it is unpredictable, so I’m caught unawares.
At least with a regular hangover, you know you were drinking the previous night.
unpredictible – the doctors love that! i never have any 2 days alike for sure!
And then there’s the methotrexate hangover. You can’t even go out for a drink while taking the stuff, but you can wake up two days a week with what calugg calls “the hangover from hell.”
“What answers do they expect?” is the problem here. What happens if your answer is deemed “wrong”? What if I’m just feeling a little more sanguine and tolerant one day and rate my pain and stiffness lower, even though it’s actually worse? How long should I say the stiffness lasts if I haven’t been able to crouch for the last six months or open my hand for two years, but the Frankenstein walk eases up after a couple of hours?
Having dealt with chronic pain for more than 20 years, I’m not objective about it at all. X doesn’t hurt compared to Y, but if Y eases up I realize that X does indeed hurt like mad. Some days I succeed at ignoring most of it. Other days, not so much.
I’m afraid they think the scale of 1 to 10 makes it easy for us to tell them how we feel, and to compare it to last time.
Great post- before I got lucky and the meds worked my stiffness was morning and night. The pain was usually the worst at night.
I remember lying in bed one evening and I saw a spider crawling across the ceiling, soon to be directly over my head, I couldn’t move- it was a horrible feeling to be so helpless. My hubby came on the run and got it but I’ll never forget what being so disabled I couldn’t roll on the bed feels like. People just don’t ‘get’ what real stiffness means.
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Kelly – you rock. I am lucky to be blessed with a knowledgeable, pro-active Rheumie Dr. who gives me latitude to try different meds, encourages dietary modifications, yoga, and actually has conversations with me about my quality of life. That being said, I am always pleasantly surprised at how my self-awareness is expanded with every RAW blog I read. Now – as far as “morning stiffness” (yea, my morning sickness did not fit the doctor’s parameters either, yet I was still very pregnant) – I am painfully stiff after any period of inactivity (sitting, eating, talking on the phone, driving in my car) – if I’m not walking or using my hands, they become angry. All day long. Keep on blogging. You’re my hero!
At my last rheumy appt she asked about stiffnes, my reply was I was stiff in the morning and she wanted to know exactly how long…forever. And I also explained that I would be stiff and painful after activity. She explained that that was probably mechanical and not arthritis. What? I am so glad I found RAW! I have learned so much and this will help me advocate for myself better! THANKS,
EVERY time I go to my Rheumatologist, even if it’s only 2 weeks between visits, I have to fill out a 2 page questionnaire. One of the first questions is; how long (in min or hrs)is it upon rising before you’re as loose as you’re going to be for the day? Huh!? I did paraphrase, but, that’s the gist of the question. That space remains bare on my questionnaire.
Cannot fathom that anyone seeing a rheumatologist for RA is given pages to fill out, like adding insult to injury. I am terribly stiff upon waking, and whenever I stop moving, like, when I sit, or stop flexing my fingers (yea, I walk around doing that). All day.
I am recently diagnosed with RA. Morning pain and stiffness are very bad for me. Having frequent tardies to work. No good. The pain eases around 11 or 12 pm. Around 3 pm I feel very exhausted and the pain returns around bedtime and all night long.
Mike, first of all thanks to everyone for their stories, I finally feel like someone understands. Please tell me the name of the best rheumatologist in Oklahoma as I’m moving soon. Also, my worst stiffness happens at night! My husband literally has to help me move sometimes because my hands, elbows, shoulders get stuck! And I mean stuck to the point of tears and crying! Doc hates to he’s that because that’s not the time of day on the form I fill out! But I always write it in anyway…always yell them exactly how you feel and what your experiencing, whether they like it or not.
Thanks,
LB
This question like all the chart questions is hard and frustrating. Sometimes I want to write, “do you mean now, right this minute, or 2 hours ago, or do you want me to predict how I’ll feel 2 hours from now”? I almost always have morning joint pain. I get up hours b/f work b/c it takes times to be well. But I also randomly get pain throughout my day. Not long ago I went hiking (on vaca in Colorado) A co-worker upon my return asked, how do you accomplish THAT when you seem so sore at work? Me: Head hung low b/c I was so proud of that accomplishment and in one fell swoop it was taken away from me. But I patiently explained, hiking is one of my first loves. I was brought up in the mountains, and being high in the hills is in my blood stream. I miss it so, I went for it. However, what you do not see is the pain I was in for at least a week afterwards. The next day I had to cancel our horseback riding trip, and take it slow and easy. Therefore the question, do I have joint pain later in the day… Yes often but it depends on many other factors. I have days where I go in and simply kill it at yoga class. Others when I come apart at the seams and walk out frustrated and frankly embarrassed. It’s a journey, and I cannot answer on a 1-10 scale. Right now, right THIS minute… I’m having a hell of a time typing this post. (Sorry if there are a lot of mistakes)