What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
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.
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:
10 Dumb Questions About an MRI for Rheumatoid Arthritis
Can Rheumatoid Arthritis Affect the Spine?
What is Remission of Rheumatoid Arthritis? Part 1
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This is all so true. I was diagnosed in Feb. 2009. Early stages, so hands, wrists. Then in the past 8 months progression into other joints and more symptoms. I had no idea what to expect. I go weekly for mtx injections (also take plaquenil) and just this morning asked about “burning” pain, is this normal?? Yes they said. OK thanks for letting me know. Everyday something different. Having moved recently, I found the more I did, like packing, unpacking, trying to get settled the more pain and swelling. Called doctor in middle of move told them about horrible pain and swelling, was prescribed some pain meds, and told if gets bad don’t move and rest. Usage causes more pain and swelling…didn’t know that. Now I do.
I suspect that most Dr.s don’t get it really. It is hard to comprehend until you live it. They might say, “don’t over-do”, but to really understand the rythmn of needed rests (comfortble ones, not just on a park bench) and how much it impacts our lives….
And I think they often don’t want to “influence” how we feel by telling us the truth. If you don’t know what the reality is, maybe it won’t be true for you. It’s like not telling what it really feels like to take MTX, and hoping it won’t be a big deal to you.
Yes, we are learning on our own, what we can do and mostly what we can’t. It’s heartbreaking at times, along with the pain of finding out…. Oops, I can’t do that!! Thank you for being there for us, Kelly!!
I don’t mind learning on my own. I just started wondering why the pros don’t talk about these things. It’s as if they don’t know. That can’t be, right?
I don’t think they don’t know – they just assume you will learn on your own. Have you ever been told “let pain be your guide”? Well after you’ve done something and it hurts, it’s too late! The hardest part is trying to explain to my 8 year old why I can’t sit and draw with her sometimes, or why we can’t make cookies, etc.
Doctors….. What do they know? To give you pills and more pills. Never a real solution. Atleast not for me.
we with arthritis are a spunky, inventive lot. i’ve made my own tools to help with daily activities and my children learn when i hurt(my joints are rusty). i’ve told them my orencia is putting a straw in my arm so i can drink the special medicine and we find ways to interact together at playtime if i’m sore.
Use…you hurt. Don’t use…you get stiff. Part of living with RA!
Andrew, If I move, I hurt and I’m stiff for a recovery period. I am really in pain & stiff today all over, for example, after being in the car running errands yesterday afternoon. It was bad when I got home last night. But, it’s not over yet.
Yes, sitting still for any period makes me stiffen quickly. For example, I have to use my hands to force my knees to straighten when I stand.
Why do you think that this matter of what usage does to us is found not in any RA literature?
There doesn’t seem to be anything in the literature about usage. And it has big implications for our lives. Especially in relationship to exercise!
Ok, I’m going to do another Polio comparison here and you will see why I had such a hard time differentiating between my onset of RA and my post-polio syndrome.
In post polio treatment, we have a usage principal too. It is if you over use it, you will lose it. Figuring out what is overuse is up to you. We can’t go by pain at the time of usage because the pain and fatigue from the activity sometimes doesn’t show up for a couple of days. So, we have to learn where the limits are from past experience. For example, I feel so terrific in the pool that I will do all of the exercises with my class without any pain. Then, I get home and can barely change my clothes. I stay in bed all the next day. I’ve had to force myself to do about an 1/8 of what the others are doing in class. It is hard to remember not to overdo it and to endure (and ignore) the advise from others to “feel the burn”.
I think that the doctors don’t tell us about this because they truly don’t understand and because the adage “use it or lose it” is so entrenched in their minds.
To all you shoppers out there: use the electric carts! When I started using my scooter for all my shopping activities it really changed things and gave me lots more freedom. I still have to make sure that I don’t spend more than 30 minutes in the store but I get so much more done with so much less pain.
The researchers dont have RA which means how do they know exactly what to research?? Secondly, why didn’t our joints read the books out there?!?! Darn it I wish they had, it would be so very nice! Can I read the books to my joints and explain what they are supposed to be doing? If only they understood
I still have to make mental adjustments when the “Usage Principle” kicks in…even after 17 years. There is a rebellious “I did it before, I can do it now” that I need to quit thinking and my family needs to stop getting on me when I can’t do something. I was diagnosed at 28 and am now 45. I don’t feel 45 for the most part but sometimes the pain and fatigue kicks in and I feel older than my Mom who is 70. I have a couple of friends that make me take it easier when they are with me and I love them dearly for that. I just wish others would take a page from that play book. Thank you Kelly for the great work you are doing here! It is nice to be able to see & hear from those in the same boat as I am.
Becky, I know what you mean. I have lived my whole life with this “just keep pushing / just try harder / just keep going” attitude. It is very hard to have to stop because I just cannot go on. It is very hard to accept the reality. I end up frustrated when I can’t move at all.
You said: “my family needs to stop getting on me when I can’t do something.” I guess we need better education of the public about what RA actually is. This is one of those secret problems that is not mentioned publically much. However, in private messages, I hear about it.
What’s so shocking is you have been diagnosed for 17 years! And this still happens. It’s good to have such great friends. Sometimes, that is our survival.
Kelly,
I agree with Andrew. My RA is severe, yet I stopped excercising regularly this summer in the hopes of having a second baby (never happened b/c I couldn’t stay off the meds. long enough to try due to severe pain). Anyway, I have been steadily declining since I stopped working out 3 days/week. I know it hurts for a while after the workout. But in an overall sense, I notice I’m so much worse w/out some level of excercise. I plan to start excercising again in the pool…slowly, maybe 1 day a week first.
So I have to disagree with your usage principle somewhat, except to say that in the moment it does aggrivate the joints.
But for anyone that thinks yoga or tai chi can “cure” the disease – they are fooling themselves. Yoga hurts and tai-chi, like all our relaxation tools, just eases the symptoms like 3 percent for SOME people!!!
I only have an RA dx from an internist, I’m waiting to see the RD in a couple of weeks. I do want to add three BIG examples of this for me in the last little bit. First, my hubby and I went to a college football talegate in November and game that had me on my feet for 8 hours. The next day? I literally could not get out of bed. My husband had to stand me up like gumby and help me to the car (no, I was no hungover–I drank very very little). Thank goodness we flew home, I couldn’t have stood the 5 hour drive. I slept the entire flight and the rest of the day we got home. At that point, I had no idea what was going on.
Just this past Christmas I had gingerbread cookie baking day. I rolled out, cut, and baked 4 batches of gingerbread cookies for gift baskets. The next day I could not bend my wrists or my thumbs without extreme pain. Oh, and I got a new “bump” on my wrist from that great adventure.
Finally, last Friday was a crazy busy day at work (I’m a corp. attorney). I was flying around my office filing documents like a bat out of hell. Saturday morning? Stiff for 2 hours and down for the day. I had the lovely “flu like” symptoms that pop up when I over do it. Oh, and I have a nice Baker’s cyst on my left knee to match the one on my right. I was in a chair all day, so it isn’t an injury cyst, it’s a too stressed out, going too fast cyst.
So, I don’t yet know what “just the right amount” is, but I definitely know that my body will tell when I’ve done too much. It doesn’t tell me very nicely, either.