Rheumatoid Arthritis exercise impasse

Is there any mainstream medical website or magazine that does not preach exercise for Rheumatoid Arthritis? I have not found one. What is the truth about Rheumatoid Arthritis, exercise, and health?

Earlier posts on RA exercise have discussed plain RA facts of life, striving to present a realistic view of exercise and RA. Believing common sense should prevail, I proposed this theory about exercise and RA: If you can, you should; if you can’t, you shouldn’t.  

The original post remains popular since the perpetual Rheumatoid Arthritis exercise dictate is a sore point for many patients, who are sore enough already. But the argument is far from settled for those who write arthritis magazines and preach exercise as a chief road to relief and remission from RA. Bluntly, it’s like this: Experts loudly proclaim that RA patients must get off their bums and workout so they can feel better. Patients are embarrassed that they can’t do as they’re told and wonder what they are doing wrong. Countless RA’ers have told me of frustration and shame about physical fitness…sometimes from their wheelchairs.

My best shot: Rheumatoid Arthritis exercise facts of life

I can only write so loudly; so, please listen as loud as you can.

Certain Rheumatoid Arthritis patients can exercise in the traditional sense…

• …because they are not in constant flare.
• …because they have several unaffected joints.
• …because they have a mild case of RA.

However, most Rheumatoid Arthritis patients do not perform any strenuous exercise. The National Data Bank of Rheumatic Diseases reported that only 18 percent of people with RA do any aerobic exercise and only six percent do substantial (aerobic) exercises. If you have moderate to severe RA, you know why that is. If you don’t, I’ll try to explain this to you. You might start by reading this post about the Usage Principle.

Evidence about exercise

In Consultant Live, a publication for physicians, I read Exercise Programs for Your Arthritis Patients. It begins, “Exercise is a safe and effective therapy for patients with osteoarthritis or rheumatoid arthritis.” Sounds familiar…  but read on. Deeper into the article, find this: “Relative contraindications to exercise include recent joint replacement, significant joint damage, or an actively inflamed joint. Such conditions may necessitate avoidance of certain ranges of motion so as not to increase pain or cause additional damage.”

A typo? No, that exact statement is repeated twice in different sections of the same article. Sounds akin to this: If you can, you should; if you can’t, you shouldn’t.

The American College of Sports Medicine publishes guidelines for exercise safety. The statements about RA in their materials are oft quoted. Consider this page on the website of the National Center on Physical Activity and Disability. It says:

According to The American College of Sports Medicine (ACSM), vigorous exercise is contraindicated in the presence of acute joint inflammation or uncontrolled systemic disease. Plata and Russell suggest 48-72 hours of rest for those experiencing diffuse flares of RA. Iversen et al. highlight that those with an acute flare-ups (signs and symptoms include redness, inflammation, pain, and stiffness) of RA can participate in static strengthening (muscle contraction without joint movement) and gentle ROM exercises to enhance muscle strength and ROM without causing detrimental effects. These exercises should be performed one time per day on all muscle groups and held for a six-second count when acute flare-ups occur.

For Rheumatoid Arthritis patients who can exercise, caution is still advised: “According to The American College of Sports Medicine (ACSM), those with RA can stretch on days when RA flares and other forms of strenuous activity are contraindicated, but stretching unstable, hyper-mobile joints should be avoided, and people with RA should concentrate on not over-stretching the joints.”

What my Suburban and gumbo say about RA exercise

One day, I did a hundred pushups. The next day, I could not carry my own purse. If you are wondering what makes me so sure I’m correct about Rheumatoid Arthritis exercise, that’s it. Sudden onset of physical disability from RA is not caused by laziness.

Recently, I parked my Suburban without power steering.  It was difficult for me to pull hard enough to control the truck. I could feel each joint in my hands pulling loose since they are all unstable. For days, my wrists and shoulders hurt more than they usually do.

It’s extremely hard for me to do most things; but, I do as much as possible. Movement brings pain and weakness, not increased strength. It’s as if the principles of exercise work backwards with RA.

If I make the bed or cook a pot of gumbo or dress my four year old, there are consequences. Just this week, a commenter mentioned how difficult it is to pull laundry from the washer with her RA hands. Once, I mentioned that on the blog and I got a few messages about it. I’m not an isolated case.

Recommended reading:

• Rheumatoid Arthritis Joint Protection
• Should Rheumatoid Arthritis Patients Exercise?
• Should Rheumatoid Arthritis Patients Exercise, Part 2
• The Truth About Rheumatoid Arthritis Info Will Be Told!

What is acting in Faith?

When my daughter was four, she lost her hearing. There was trauma, yes. There were doctors, yes. Then there were hearing aids. Yay!

Do you know what else there were? There were naysayers.

Some pressured me to have faith that she would be healed. Close friends abandoned us for turning to the medical profession instead of relying completely on God to heal my baby. Since she was a good lip reader, people in the church said the hearing aids were a drastic overreaction on my part.

Having moved 2,000 miles from home days before, I was completely alone to make many decisions. My daughter has been wearing hearing aids for 16 years now. When she was eight, her baby brother got his first hearing aids. Again, there was controversy. The pediatrician didn’t want me to test his hearing. Foolish doubting mom again.

At his first audiology appointment, the severity of my son’s loss was evident. I was tearful. The professional warned me never to have another baby. [1] Did I make these decisions in “faith”?

Rheumatoid Arthritis natural remedies and putting faith in nature

These days, my decisions are concerning RA treatment. The judgment of some is that we ought to have faith in Rheumatoid Arthritis natural remedies. They are critical of medical treatments for RA, putting trust in natural remedies.

Whether it’s positive thinking or RA natural remedies such as herbs or foods, they put their trust in nature itself.  Honestly, I was surprised when I learned that interfering with nature is controversial.  This is not meant to be sarcastic: Doesn’t everyone use soap to interfere with germs? Or get their teeth filled? Or set a broken arm? Or wear glasses? Or a girdle?

…I thought it was me who’s the “natural” radical having had five homebirths with not as much as a Tylenol. Am I never on the right side? Can you guess why I never tried to persuade anyone else to homebirth? Wouldn’t I have felt accountable if something went wrong with a baby?

It seems to me that we already interfere with nature every day. We each decide how to interfere and how much. Sometimes, I reflect that this nature is the same nature that gave us RA to begin with.

What harm is there in pressuring RA patients not to take medical treatment?

What harm is there in offering hope for a cure to RA? [2]  What if it is not a cure? What if RA can spread through a body like a cancer via fibroblasts? What if someone were offered false hope and she delayed treatment? There is provable harm to delaying treatment.

Rise up & walk

Of course it’s not wrong to offer people hope. But it sounds cruel for those who are not sick to judge those who are. Should someone with a mild case of RA in a couple of joints encourage those with severe RA to quit taking DMARDs and go skiing when they can barely walk? Or to rely on positive thinking to run marathons when going to the bathroom is a challenge? How does it help to judge those with severe RA, insisting that they rise up and walk?

Recommended reading:

• Is there a cure for Rheumatoid Arthritis?
• Can I Delay Treatment for Rheumatoid Arthritis? part 2
• 3 Reasons to Begin Using Rheumatoid Arthritis Medicines to Fight the Disease
• The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?
• Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment 

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[1] Years later, I did. His hearing is perfect, but if it were not, I would still choose to have my son.

[2] There is no cure for RA. The remission pattern of RA is only one of the things that make RA very complicated to study as I recently discussed.

Touchy subject: a cure for RA

It seems like the there are thousands of the websites about Rheumatoid Arthritis which tout one cure or other. One of them must be real, right? I wish.

The other day someone became particularly angry with me after I typed this: There is no cure yet for RA. I’m sorry. I wish there were. People really want to believe there is a cure for Rheumatoid Arthritis. At my first rheumatology appointment, I asked whether there might be a cure. When I read my chart years later, it sounds like he thought I was a nut.

A food to cure RA

No, there is no food to cure Rheumatoid Arthritis. Wouldn’t that be great if we could eat yummy berries or fish instead of taking shots? Everyone I know would rather drink juice and swallow fish oil than take medication.

Nutrition is still important for RA’ers. We can use diet as one more weapon to fight inflammation. However, there other reasons: RA’ers  are predisposed to several conditions which can be combated in part by nutritional methods. Examples are heart disease and osteoporosis. Look for more nutrition posts soon.

A medicine to cure RA

We are seeing some AIDS patients living for decades. Most of us know someone whose cancer has been cured. Could it be that medical science has just done so much in our lifetimes that we expect a cure for Rheumatoid Arthritis to materialize soon?

I’ve never read a science or medical abstract which uses the word cure. So, I asked a friend who is always current on research for Rheumatoid Arthritis treatments to give me an opinion on RA cures. My friend said that we are decades away from a cure, especially since we do not yet understand how Rheumatoid Arthritis begins.

Are some people cured of RA?

What is so confusing is that Rheumatoid Arthritis has at least four possible courses. It may remit completely for a small percentage of people and never return. RA may flare and remit alternately without progressive damage or with increasing damage and disability. Or, RA may flare in an uninterrupted fashion, creating more damage all the time.

It is almost impossible to tell what causes a remission in someone whose Rheumatoid Arthritis remits anyway. If Rheumatoid Arthritis has been cured, then it will not return. And more significantly, if any substance could cure RA, it would work on the severe unremitting RA which has no natural remissions. These RA’ers can show only modest improvement even on disease modifying medicines (DMARDs).

Is this cynicism about an RA cure?

This site is written by a person living with Rheumatoid Arthritis who wants to see this disease eradicated from the face of the earth. If there were a viable cure, I would want to know about it and be cured. I believe there are at least two real problems with mistaken beliefs about an RA cure:

1) Some people do not treat their Rheumatoid Arthritis as they put their faith in a false cure, so they suffer greater permanent damage from RA.

2) As long as the public is confused about what RA actually is, what it is like to live with it, and what treatments and cures are available, it will remain difficult to educate the general public or obtain widespread support for a greater movement to find a genuine cure for RA.

In other words: It would be better for us if the world heard this: Rheumatoid Arthritis is a horrible incurable disease that causes irreparable damage. Let’s find a cure.

Recommended reading:

A happy post about vitamins: Fun Ways to Fight Rheumatoid Arthritis

First of a popular series: Should Rheumatoid Arthritis Patients Exercise?

Barriers to Rheumatoid Arthritis diagnosis: What Makes Diagnosing Rheumatoid Arthritis So Difficult?

A Story of a Christmas Present and Birthdays Past

A few years ago, I got a new digital camera for Christmas. It was too heavy for me to hold. Even with the neck strap, I couldn’t use it.

Eventually, after more time on the RA medicine, I was able to hold the camera for short periods. So I took a few pictures of things that were special to me. There were a couple of birthday cakes and some fireworks.

It’s a pretty complex camera and I didn’t really know what I was doing. So, there were lots of mistakes to laugh about. However, one of them was not so funny. I accidentally formatted the camera.

Just in case someone doesn’t know, that erases all the data – er, I mean birthday cakes and fireworks.

I know how to use my camera much better now. But I have a different problem: I have to force myself to format the camera when it needs to be done. It’s almost impossible to make myself push that button.

It reminded me too much of RA: Photos and memories are so valuable to me

It took me a while to figure out why it was so traumatic to lose those pictures. At the same time that I had lost them, I had lost so much else. I finally figured out that it was like my life had been re-formatted too because of RA. I didn’t want to risk anything else being erased.

Somehow, I guess I connected the two things. I don’t want the trauma of losing any more pictures the same way I don’t want the trauma of losing any more of my life.

Christmas and Rheumatoid Arthritis

I’ll continue to fight this against disease and everything it tries to take from me. As for the way that it forcefully rearranges my life, I will continue to look for new ways to enjoy the old things I love. But I will always adore cameras, photos, and memories – and Christmas presents.

 Recommended reading:

A Few of my scrapbook photos on this site:

The Me Before Rheumatoid Arthritis

Rheumatoid Arthritis and the Kitchen: Hey, We All Eat!

What Is Joint Protection for Rheumatoid Arthritis?

Love of Challenge and the Rheumatoid Arthritis Speed Limit

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

Holiday Plan of a hysterical woman:

1. Wednesday: Get Orencia IV. Experience immediate miracle.
2. Thursday: Go Christmas shopping all day.
3. Friday: Decorate the house & put up the Christmas tree. Stay up all night to make lots of homemade gifts.
4. Saturday: Mail the gifts. Write Christmas cards. Make cookie dough.
5. Sunday: Bake cookies & decorate. Deliver to friends.
6. Monday: Wrap all the presents. Buy the Christmas groceries.
7. Rest of week: Watch White Christmas & relax with family.

RA and a Reality check

I got sideswiped yesterday by my own caution… I didn’t want to wait any longer for my second Orencia IV infusion. I scheduled it for today. But there was one problem. I hadn’t taken the methotrexate in three weeks because of a chest cold.

I know that the methotrexate can help protect me from developing antibodies against the Orencia. It is about time for some Rheumatoid Arthritis medicine success around here. I feel like I’ve lost enough time to RA. So, I am sure to follow the guidelines…

I know the Orencia won’t really put up my Christmas tree. Or bake us some Christmas cookies. But, I cannot help hoping it will make a difference…

Anyway, yesterday my regular methotrexate shot made me sicker than usual since my body was no longer accustomed to it. I should have known that could happen. It would have been wise to decrease the dose for my first shot. I learned that lesson.

But I never seem to learn the other one. I still catch myself making these crazy plans – thinking I can do it all somehow. I hope laughing at me will make you smile.

Recommended reading:

How well do Biologic medications help Rheumatoid Arthritis?

Rheumatoid Arthritis and Medication: Are Natural Medicines Better?

Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life

The Infamy of Rheumatoid Arthritis (RA)

I’ve answered several questions lately about Rheumatoid Arthritis and secrecy. Is there something embarrassing about RA? Can we just talk about it with anybody?

Lucille Ball was one of the most famous people with Rheumatoid Arthritis. However, when she died, I did not hear about her RA battle. It was not until I did some RA research that I realized Lucille Ball had Rheumatoid Arthritis.

Why was that? I was a huge Lucy fan; she was a funny girl’s idol. She made it cool for a woman to be goofy instead of just glamorous.

Lucille Ball scrupulously hid her Rheumatoid Arthritis from her adoring fans as well as from others in her industry. I’ve read that she did not tell people that she was in pain or why she required rest. When you read about how, as a celebrity, Lucy hid RA, it seems like she felt some kind of humiliation about the disease.

Lucy’s not the only one. There’s Kathleen Turner, who was willing to let people think she was an addict instead of let on that she had Rheumatoid Arthritis. It reminds me of a post by Sara a while back in which she called RA the Loser Disease.

As I discussed with IrishBookFairy recently, most RA’ers do become private about their Rheumatoid Arthritis symptoms. Before I started a Rheumatoid Arthritis blog, I had to practically pry information from a couple of people with RA who were corresponding with me. I’ve been trying to figure this out for a while.

Early in the last century, people hid cancer. But that was due to the likelihood of impending death. Fortunately, both of those are much reduced today.

I’ve read that people with psoriasis or shingles often hide their illness due to embarrassing symptoms. Are RA’ers doing the same thing? What humiliation is there in having an illness that you cannot have caused?

Does Rheumatoid Arthritis disability make us feel humiliated? Is it caused by the reactions of others to our pain? Or potent Rheumatoid Arthritis medicines? What do people with Rheumatoid Arthritis symptoms have to be embarrassed about? Is it the Scarlet Letter A of diseases? What for?

Related posts:

Celebrities and Rheumatoid Arthritis

5 Ways We Can Spread Awareness of Rheumatoid Arthritis

Some Answers for Rheumatoid Arthritis Just Bring More Questions

The Birth of the Rheumatoid Arthritis Warrior Blog

Rheumatoid Arthritis symptoms don’t play by the rules

As I’ve mentioned before on the blog, my joints did not read any Rheumatoid Arthritis books before I got RA. I had no idea which joints were supposed to be my Rheumatoid Arthritis joints and which were supposed to be my “healthy” joints. I didn’t study for my blood tests either. No, the Rheumatoid Arthritis had a mind of its own and it did not always obey those moldy ol’ American College of Rheumatology guidelines.

Like most of you, I faced each new symptom with surprise and dismay. Yes, Rheumatoid Arthritis symptoms may sound peculiar to my neighbor, an RA Atheist, but they seemed even weirder to me in the middle of the night. She may excuse me as a hypochondriac, but what do I do? How can I excuse my own Rheumatoid Arthritis symptoms as hypochondriacal? “Get out of here, you Phony! You are not real.” I wish.

Again, like most of you, I went to the doctor. I don’t mean my rheumatologist – I mean Dr. Google. I found journal articles, abstracts, blogs, and forums. But, I was puzzled there, too. Everywhere, I read the word “flare.”

So, what’s a Rheumatoid Arthritis flare anyway?

I was so puzzled. What on earth does word flare mean? I kept reading.

Eventually, I began to get the idea that Rheumatoid Arthritis symptoms for some patients wax and wane. The way they tell it, it seems that for some people, RA symptoms are episodic or interrupted by periods of near relief. I felt like a non-RA’er on the outside looking in, trying to figure out what’s going on.

Now, I was really in trouble. Was I going to get an “F” at Google University, too? Was it another conflict between the reality of my Rheumatoid Arthritis symptoms and what they are supposed to be?

When I hear a doctor talk about RA flare, it sounds like life is pretty good between the flares. According to About.com, a flare is an increase in symptoms from the usual. It might be joint pain, joint stiffness, swelling, or fatigue. But, who or what defines the baseline symptoms? I’m still confused. My RA is always the same: 24 / 7. Ten feet deep. Wall to wall.

What is your experience?

Do you think “flare” is an accurate notion? How do you feel when your doctor uses the word “flare”? Does she seem to act like your RA is “better” than you think it is? Does your Rheumatoid Arthritis “flare” even though you are on DMARDs? How much time is there between “flares”? What is your baseline (between flares) like?

Recommended reading:

• So Glad Your Rheumatoid Arthritis Is Cured
• The Use It or Lose It Approach to Rheumatoid Arthritis
• Baloney About Rheumatoid Arthritis