Why ask what causes rheumatoid arthritis pain?
Today we answer a letter from a reader that raises key questions about living with rheumatoid disease (RD). Why is it so painful? Why doesn’t treatment take away pain? Why isn’t the pain dealt with? In part, the answer is found in another question: What causes rheumatoid arthritis pain?
Until recently, no one had any idea. So there have been many crazy stupid evil theories about how people with rheumatoid disease are depressed or have a newly minted maladaptive pain processing disorder.
Where we stand on what causes rheumatoid arthritis pain
If someone responds very well to treatment, disease activity and pain are reduced. Unfortunately that is still a minority of people with rheumatoid disease (PRD). So, many posts on RA Warrior deal specifically with the topic of RD / RA pain: 42 with a Tag rheumatoid arthritis pain and 21 with a Tag pain tolerance / RA stoicism.
Let’s take a moment to see where we are on the topic of what causes rheumatoid arthritis pain:
1) As I wrote last year on the role of pain in RD / RA, Pain is the body’s primary indicator of a problem. Pain has always been an obvious symptom of rheumatoid disease activity.
2) Part 2 of that series discussed the popular idea of so-called remaining pain in RA, pain that is leftover after disease treatments are given, regardless of other remaining symptoms.
3) Part 3 dug deep into the data to show that remaining pain is actually a useless model since RA pain persists as long as the disease is active.
But why, Kelly? Why does RD / RA cause pain? And why isn’t there enough help for RA pain?
Science is finally bringing some answers. They are answers that vindicate PRD by exploring what really causes rheumatoid arthritis pain.
I’m only 64 but feel like 90, what will tomorrow be? …address pain since I’m not getting much help
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A protein causes rheumatoid arthritis pain?
Experiments in molecular pain research at the Karolinska Institute in Sweden have shown that autoantibodies against citrullinated proteins (ACPA) can produce pain without any signs of inflammation or swelling.1
(Don’t let the long words trouble you: ACPA are what is tested in an anti-CCP test, the most specific test for RD.)
According to the investigators, some types of ACPA could cause long-lasting pain even in the absence of classic inflammation symptoms. Other laboratory research by the same Institute also demonstrated ACPA’s role in joint destruction.2
Read this slowly a couple of times for it to sink in: Laboratory research is separating pain from inflammation,1 destruction from inflammation,2 and “clinical disease activity” (swelling) from structural damage.3 This represents a change in the template for this disease.
For years I have advocated such change based on facts that patients report. Why do a majority of PRD report times of “invisible illness” when they suffer pain, stiffness, weakness, or disability without obvious external swelling? The reason is that many assumptions about RD are wrong. They were not based in either research with patients or the laboratory.
What if we find biological causes for rheumatoid arthritis pain?
What if biochemistry and biophysics are able to demonstrate what causes rheumatoid arthritis pain and it has nothing to do with laziness or weakness or secondary gains?
What if PRD did not have to deal with assumptions that their illness was due to character flaws? Then we could find the true causes of disease activity, including pain. And we would do whatever is necessary to humanely treat Pauline’s (and our) pain in the meantime.
If ACPA causes rheumatoid arthritis pain, then we’re not crazy. The molecular pain researchers didn’t put it like that. But I’ve read that paper at least ten times in the past year and that’s what I heard.
If molecular pain research shows ACPA /anti-CCP causes RD /RA pain, then we’re not crazy. #rheum
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Read this excerpt from their conclusion and let me know what you think.
WHAT DO YOU THINK ABOUT THE NEW RESEARCH SHOWING ANTIBODIES ACT DIRECTLY TO CAUSE PAIN?
WHAT IS YOUR EXPERIENCE WITH PAIN AND NO OBVIOUS SWELLING IN YOURSELF, LOVED ONES, OR PATIENTS?
HAVE YOU HAD YOUR ANTI-CCP / ACPA TESTED?
In honor of new proof we are not crazy, I created a new design in our RA Warrior store. Click here to see a few items with the new I am not my Rheumatoid Disease design.
- Rheumatoid Arthritis Swelling, Take Two
- What Does Rheumatoid Arthritis (RA) Look Like?
- Remaining Pain in Rheumatoid Arthritis
- Rheumatoid Arthritis Statistics
1 Wigerblad G, et al. Autoantibodies to citrullinated proteins induce joint pain independent of inflammation via a chemokine-dependent mechanism. Ann Rheum Dis. 27 Nov 2016;[cited 2017 Mar 24]75:730–738. DOI: 10.1136/annrheumdis-2015-208094
2 Krishnamurthy A, Vijay J, Hensvold H, et al. Identification of a novel chemokine-dependent molecular mechanism underlying rheumatoid arthritis-associated autoantibody-mediated bone destruction. Ann Rheum Dis 2016;[cited 2017 Mar 26]75:721–9. DOI 10.1136/annrheumdis2015208093
3 Villeneuve E, Haraoui B. Uncoupling of disease activity and structural damage. Does it matter clinically? Ann Rheum Dis 2013;[cited 2017 Mar 26]72:12. DOI:10.1136/annrheumdis2012202650
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