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.