Sensational Headlines on Rheumatoid Arthritis & Exercise, Round 6 | Rheumatoid Arthritis Warrior

Sensational Headlines on Rheumatoid Arthritis & Exercise, Round 6

I got an email recently from a rheumatology magazine with a sensational headline about “exercise and Rheumatoid Arthritis.” The article linked to is a year old, but some of our doctors read these emails. And the public also gets confused by ridiculous headlines like “Nearly Half of RA Patients Are Sedentary. Here’s Why.” So, we’ll revisit the issue of “Rheumatoid arthritis and exercise.” Note that I’ll not restate every major argument or reuse every valuable resource on the subject; please click here to read all posts on “exercise with Rheumatoid Arthritis.”

What they think of why “Rheumatoid Arthritis patients won’t exercise”

“(R)egular physical activity has replaced bed rest as the recommended response to the stiffness and pain of rheumatoid arthritis (RA). But many patients who have RA do not really believe this, according to a recent study. Lack of conviction and motivation, not pain or mood, appear to be the major factors that deter nearly half of RA patients from moving about enough to help their situation,” Musculoskeletal Network.

Rheumatoid Patient Foundation poster sectionWhy are articles on Rheumatoid disease and exercise couched in this way? Asserting exercise benefits all Rheumatoid patients, but that patients just refuse to accept that “fact.” Look carefully at the quote above: however wrong the author’s assertion is on exercise, he’s correct on one fact: Most Rheumatoid patients do not believe exercise will improve their RA.

Let it be acknowledged that exercise correlates with better-controlled disease, but where is the proof that exercise improved disease in those patients? Isn’t it more logical to assume that patients with more ability to exercise do so?

Why is there such a grave misunderstanding of Rheumatoid Arthritis patients’ position on the issue of exercise anyway?

BECAUSE THEY DO NOT UNDERSTAND WHAT IT IS LIKE TO LIVE WITH RHEUMATOID DISEASE.

1) The Usage Principle

They do not recognize that when the disease is moderately to severely active, disease activity increases with physical activity. This is a rule that patients call the Usage Principle. (Yes, I invented the term a few years ago because rheumatology doesn’t have a word for a notion they do not know about or study.) This is not universal, but it is a key factor to understanding active disease, sometimes called “flare.”

From years ago when a patient told me she does impossible chores like washing dishes and pulling weeds before seeing her rheumatologist so that he will see swelling in her hands to the 2011 RPF poll of patients showing nearly 70% say physical activity consistently increases their joint pain, we know the Usage Principle reigns for a majority of Rheumatoid patients. Other than drugs, rest is the way to quiet “flare.”

2) Disparity on Rheumatoid disease activity

It is well documented that doctors consistently rate disease activity lower than patients do and often fail to understand the scope of joint disease activity, limiting it to “swelling” and “pain.”

3) Dissociation between swelling and disease activity

Inflammatory disease activity has been proven in a majority of Rheumatoid patients who were labeled as “in remission” due to lack of conspicuous swelling.

4) Disease activity is not measured anyway

A lack of awareness of patients’ disease activity levels results from a lack of adherence to recommendations for measuring disease activity and leads to care that is not consistent with American College of Rheumatology treatment recommendations.

Rheumatoid arthritis exercise comments pie chart

What are Rheumatoid Arthritis patients’ actual views on exercise?

Two days ago, a patient commented:

I was diagnosed three years ago and from then on, i have had fever and pain every day of my life! Everyone says, “You should exercise more, eat less, go on as before and so forth. it truly feels as though no one understands me. Every time i try to exercise, i am in pain for a week afterwards. I can’t even go swimming, because my shoulders and feet feel like they are falling off! My feet are the worst, my doctors have already fused 8 of my toes, by removing the joint completely. That was three months ago, the RA is eating through the newly grown bones and my toes are going in all directions again! Do people really expect me to exercise?

472 “exercise” comments

There are nearly 22,000 public comments on this site and many times that in social media. I spent time studying all 472 comments on this site that mentioned the word “exercise.” Obviously, I did not find every reference since there are many related words such as “workout” that I did not search. Also, I acknowledge that this is not a scientific sample since patients self-selected by commenting on this topic.

All comments were divided into the 8 categories described. I classified each comment based upon key phrases and did not count any comment twice. It is impossible to qualify each comment such as some saying that the patient takes prednisone or “lots of pain meds so I can exercise.”

Dismissive remarks: doctors or others telling patient to exercise while conveying lack of recognition of the disease (97 patients reported)
Modified w/remission or treatment: tries to walk or other gentle movement or mild exercise with treatment or during remissions (72 patients reported)
Causes flare: tries hard to exercise but it makes the disease worse, causing general flare, more pain, swelling, dislocation, or damage (40 patients reported)
Yes: can exercise pretty well with treatment or remission (38 patients reported)
Impossible: says they wish they could exercise but find it impossible (71 patients reported)
Other discussion: neutral discussion of exercise involving a healthcare practitioner (18 patients reported)
Excluded: other context, non-patient, or comment by moderator (133 patients reported)
Impossible: doctor acknowledged as impossible (1 patient reported)

Rheumatoid arthritis exercise comments bar graph

Do you think the experts understand patient opinions on exercise?

Do you think they understand the way the disease behaves in patients?

Can you exercise the way you want to?

Edit 11:35 a.m.: This issue is difficult to cover in one post. I regret not restating my mantra with regard to exercise and Rheumatoid disease: If you can do, if you can’t don’t. And to investigators my message: It seems the evidence in our community shows that those who can do, and those who can’t don’t. Let’s do some comparative studies with regard to other illnesses; and let’s not have more of these exercise studies without taking into account the functional status of the patients in question.

Postblog: It’s been over a year since I addressed this topic that the media pushes regularly against Rheumatoid patients. This is only the 6th post on this site specifically on exercise of 700+ articles over nearly four years. These are the only articles I’ve read anywhere on the topic of Rheumatoid disease and exercise that even begin to consider that patients are not either simply lazy or misguided.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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87 thoughts on “Sensational Headlines on Rheumatoid Arthritis & Exercise, Round 6

  • June 15, 2015 at 9:10 pm
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    I had a long discussion one day with my rheumy about why I couldn’t try swimming. First of all as a single mom I cannot afford a pool membership. Yes, they have open swim at the high school, at 7:30 pm. After working an 8+ hour day, what makes anyone think I have the energy or strength to drive out in the freezing cold and swim at 7:30 pm?!?? A healthy person wouldn’t want to do that ,and I physically cannot. After two and a half years with RD I have found I can do yoga some nights and found some great videos on Youtube. I’ll think about swimming when I retire, if I can.

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  • April 19, 2016 at 3:15 pm
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    I think you have to find the activity that is right for you. I’m still amazed by the things that will or won’t cause a flare. Luckily, I’m able to ride my horse without issue.

    I worked out on an elliptical last week and surprisingly my knees and hips were ok but my right wrist flared like crazy from holding onto the machine ‘arms.’

    I also like yoga but I find that I have to sit out for large portions of classes because my wrists and shoulders can’t take any ‘downward dog’ or ‘table top’ positions. I still get a lot out of it and I just let the instructor know beforehand that if she sees me not doing a movement it’s because I know it wouldn’t be good for me.

    Without a doubt I feel better after moderate exercise, as long as I’m not experiencing an acute flare. The worst is how many ‘spoons’ (I just recently heard this term) it takes. If I do any sort of exercise I usually don’t have the energy left to do other things in my day like shop, cook, clean, shower.

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