What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?

December 17, 2009May 17, 2018 Kelly O'Neill 77 Comments Cost of activity - usage principle, Rheumatoid arthritis fatigue, Transparency & living with RA

The Usage Principle makes living with Rheumatoid Arthritis hard

In the Part 1: The Usage Principle, we discussed a phenomenon which is a daily issue for many people living with Rheumatoid Arthritis. Perhaps you noticed that blog post was unusual in that it did not have footnotes or links to studies which discussed the subject. I did not quote any because I did not find any. There may be some; I just haven’t seen any.

The concept is explained in Part 1 with shopping as an example. However, lots of comments describe the problem in other contexts. Basically, the problem is that any use of a joint which is inflamed by Rheumatoid Arthritis usually leads to worse inflammation. This can translate into pain and stiffness when movement lasts more than a few minutes.

For patients like this, there is a recovery period after activity. It can be hours or days. There are many examples in the comments on this blog. Recently, a veteran RA’er described going to work at a new job. She said that her RA is much worse and realized that the reason she had felt so much better before was that she had been able to rest more while out of work.

By the way, this makes life pretty difficult for those of us with RA in every joint. It affects everything from flossing my teeth to chores to sports. When I can do any kind of work or exercise, it is followed by a recovery period. I seldom mention to anyone that life is darn hard every day.

Do they know what living with RA is like?

Maybe you wonder why I made up the cool name “The Usage Principle” for this phenomenon. I couldn’t find one in a book. My doctors didn’t offer me a name for it. As a matter of fact, they have never admitted that I am not the only one. I’ve begun to wonder whether they know that this is a huge part of living with Rheumatoid Arthritis.

Then I realized: I was never warned about most of the things I live with every day. I spent the first 6 months of RA in shock mentally about what was happening to me every day as new joints hurt. Why didn’t anyone tell me what to expect? I first learned of the Rheumatoid Arthritis fatigue by experience. And RA stiffness, too…

I’ve told you before: my joints didn’t read the books first. Maybe it would have been better for me if they had. They would behave themselves much differently now.

Maybe researchers don’t know about this aspect of living with RA. Maybe doctors haven’t heard of it from any patients. Or maybe there is another answer.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

77 thoughts on “What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?”

M
January 8, 2018 at 5:55 am
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Why are you not on better medications. I have severe RA. I was diagnosed just after my 23 birthday but had been showing symptoms since I was 16. At one point it was in my spine, shoulders, hips, knees, feet, hands, wrists and elbows. I have developed CRPS and have a damaged ulnar nerve. I get what it’s like to be in insane pain. I also am on some amazing meds. I’m lucky, I’m canadian so I pay 1% of my meds. My arthritis meds alone are 1700/month.
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