Rheumatoid Arthritis Exercise, Round 5
This is the third post in the Frying Pan series to honor of the blog’s 3rd year, considering some significant issues from the last couple years. Sometimes the frying pan is more suitable than the sword. Today we’ll consider Rheumatoid Arthritis & exercise for the fifth time.
The relationship between exercise and Rheumatoid Arthritis
One of the first things that tips me off that someone does not understand Rheumatoid Arthritis is the promotion of exercise as a therapy for active Rheumatoid disease. As well documented in the other exercise posts, the relationship between RA and exercise is has always been clear:
- Exercise is healthy for RA patients, as it is for everyone else, when the joints are not in flare.
- Flaring joints should not be used vigorously, but destructive inflammation should be quelled, as with an injury.
An exercise expert wonders why RA patients don’t exercise more
The level of misunderstanding about how to heal RA is sometimes hilarious.
Other times, it’s frustrating:
An article in Rheumatology News “RA Patients Shun Exercise, but Most Know of Benefits” features a survey that proves patients have gotten the message “Exercise is helpful to RA,” but don’t act upon it because they are in pain and worried about harming their joints further.
The survey was conducted by Ms. Rebecca-Jane Law of the School of Sport, Health, and Exercise Sciences at Bangor University, who says, “The benefits of high-intensity exercise in RA include improvements in aerobic capacity, strength, physical function, and psychosocial well-being.”
According to Law, “RA patients tend to be less active than… the general population.” She performed the survey of 247 patients “to determine why this might be,” “despite the known benefits of exercise.”
RA patients’ opinions on exercise
Over half of RA patients (52%) admitted that they did not exercise because it caused pain. Pain is a sign, according to experts, of active disease in a joint, meaning that it should be rested – not stressed. Several links to expert opinions support that viewpoint, but RA patients don’t need experts to tell them. They know when a joint is flaring too much to stress it. That’s why 44% of patients surveyed said they worried about causing harm to joints. Patients know what they are able to do. However…
Only 19% said they felt health care professionals knew how to advise RA patients on exercise.
Why not? Because, we live with the Usage Principle. We know the consequences of “high-intensity exercise” with active RA even though others might not understand it.
Exercise does not treat flaring Rheumatoid Arthritis
- Some people have RA that only affects certain joints. Of course the unaffected joints can be exercised, depending upon systemic flaring symptoms such as fever and fatigue.
- Some have RA which flares and remits; they can exercise between flares.
- In no case does exercise itself lessen the flaring of Rheumatoid disease.
If you’re a care giver or medical professional uncertain about exercise with flaring Rheumatoid Arthritis, I recommend that you ask patients what it’s like to move with RA. Remember that 19% number and help improve understanding by learning about the RA experience. Here’s a start:
Consider the jaw and the sternum joints:
RA inflames the jaw, regardless of how much patients use it to talk or eat. Exercise does not prevent or improve it. However, moving it can become impossible during flares, making eating difficult. RA frequently inflames sternum joints, regardless of how much a person breathes to exercise them.
Consider the reality of exercise and RA:
I go shopping with my kids, stopping occasionally to rest or get snacks. Afterward, all of my joints are always stiff, painful, weak, and sometimes swollen. Typically, the next morning, I’m awakened with piercing pain in one ankle, the other knee, a hip, and a few toes. Both ankles are always tender and weak, yet 5 days after that moderate exercise, one of them is still flaring sharply. Does that one ankle not know that exercise is good for RA?
Please do not blame the victim. The people I know with RA do as much as they can every day. And many of them sorely miss the ability to exercise the way they did the day before they got RA.
Recommended article from Musculoskeletal Network about RA disease & exercise.
Recommended reading
- Other posts about Rheumatoid Arthritis and Exercise
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
- 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
Bonus: Ironic story about the over-exercising baby boomers and knee replacements
Exercise is a funny word with so many meanings. I would say that I exercise with RA, but what I consider exercise might not meet with someone else’s definition. My exercise consists of a routine of joint movements and stretches to preserve range of motion. This routine was worked out between me and my physical therapist. It certainly isn’t strenuous exercise, but I think it is beneficial. At least it feels like I’m doing something for my body and my RA other than swallowing pills.
good point – about definition. I’d say that your stretching routine counts & I’ll join you in that if I can someday. And I consider the dragging myself 20 minutes between locations at the conference last week exercise, too. and doing laundry for a family of 6/7 people. I cannot wash dishes or run or play tennis, but whatever I can do each day “counts.
You know,I really think that part of the problem is that “regular” people without RA also experience pain when they work out. The good kind, you know? Stretching a little farther today hurts but it’s a strengthening kind of pain. So when they hear us say that it hurts to do something, they don’t get it. They think it hurts the same way it hurts them. They don’t understand that it’s NOT temporary and it’s NOT strengthening. Instead, they think we’re just lazy or making excuses.
Excellent point, Erin. I was using that distinction earlier w/ a patient about knowing “where” the safe limits are. But I never thought of it as a reason non-RA people can’t get it – *we* can tell the difference because we lived on both sides of the fence. For 40 yrs, I pressed thru pain to work 18 hr days putting stucco on my house or moving dirt to create a yard or give birth or whatever, but like you said, THIS IS COMPLETELY DIFFERENT. It is destructive.
I agree Erin, before I was diagnosed a doctor had me do exercises for my knee which was inflamed. I couldn’t walk for 2 days after, it did something bad to my joint. Guess what he said? Oh, haha, It always hurts a little when you start a new exercise. He was treating me for what he guessed was runners knee, but actually was RA and a tear in my cartilage. Hmm, or did the tear happen from the exercise he gave me?
Another reality with RA besides active inflammation, is joints that have been permanently damaged by RA. These joints can be dysfunctional and make exercise very painful or impossible. I personally have this in my lower and upper body.
Great post Kelly. Thank you. It is exactly what I needed to hear today.
I feel the same way about seeing your smile Jane. Hang in there.
Good one. I LOVE how so many ‘experts’ believe exercise is SO good for us. The author cracks me up when she writes about her painful ankle and asks, “Doesn’t that one ankle know exercise is good for it?” Of course, just walking is exercise for us. And the jaw thing? Omigosh….I have had such trouble in past years with jaw (intense) pain. I knew then it was RA too.
Kelly sometimes I think you can read my thoughts; however I know it’s not just my thoughts but so many of us who live with RA. Thanks for speaking the truth about exercise and RA – so many don’t “get it”. I happen to be lucky enough to be married to a physical therapist of course when we married I didn’t know I had RA nor how much of an impact it would have on our lives. There are times when I feel good enough to help in the yard but there is always a price to pay for those activities. Grocery shopping always leaves me hurting and ready for bed, and it’s not an activity I like to do but I must (as my husband says “gotta eat!”). I see people walking, biking and jogging every morning when I drive my kids to school – I would LOVE to be able to do that. I WANT to be able to do that, but I know it’s not possible. For me to go for a walk means pain and fatigue the rest of the day and that would rob me of my time with my kids – and that I don’t think is what so many people don’t get. RA is a balancing act. The thing with RA is that it steals away the things you want to do and leaves you to struggle with the things you have to do. I don’t have to exercise…but I want to.
Like most people I’ve talked to who have RA, I do the most I can every day. I think you hit on something that has bothered me for so long with this topic – no one wants me to exercise more than I do.
Sometimes I feel like it’s implied that I’m lying… When I say I can’t do something, I can’t – I should know more than they do. I know I can’t run (or other things) because I tried. It was a pitiful horrible experience each time – It’s so wrong to misjudge our character because of a poor understanding of what RA is & how it affects the body.
What I hate is when we fool ourselves into thinking we can do something!
I am so tired of the outrageous ads about the importance of exercising with RA. I’ve never had a remission in 8 years and the medication, when I could take it, didn’t work. I can’t have any of those immune suppressant treatments anymore since an infectious disease doctor treated me incorrectly resulting in my being colonized with MRSA and pseudomonas; two very nasty bacterium. I got MRSA in the hospital, of course, as a result of what was supposed to have been a day surgery procedure. I was admitted and remained in the hospital for 4 days. Apparently, something that was used during my procedure was not properly sanitized.
I used to see a rheumy who was a runner and expected his patients to be athletic like he was. He didn’t have RA and had the worst bedside manner of any doctor I’ve ever seen. My RA started in my heels but spread everywhere and I also have inflammation in my abdominal cavity. I’ve suffered from chronic Achille’s Tendonitis for 6 years and every part of my feet have been savaged the worst although I have problems in nearly every other joint. Just standing up can be unbearable at times; how am I supposed to exercise? It really gets my goat when people who do not have RA tell those of us who do how we should handle it. If any one of them could feel what we feel for just a few days, their perspective would be quite different.
Medical professionals should get it. Friends, relatives, strangers well I just don’t think they can’t conceptualize our reality. I love that expression “the day before I got RA” Because the day before I got sick I probably would have suggested Yoga to someone too. As much as I cringe to say it, I never could have thought that on my best day (the one day a week I get as a trade off for poisoning myself) I can walk a mile and a half with my dogs and it takes over an hour. And I am thrilled to be able to do it because so many people can’t hardly walk across the room. But the day before I got sick when I was running 3 miles a day and loved the pain of a good workout yoga probably would have seemed reasonable to suggest. So if most people in our lives are like me it’s going to take a lot of blogging and PSAs to get them to recognize that this nightmare is even possible to live through and “not look sick”. I thank God for you Kelly for giving us a voice and helping us to know our experience is real and that we aren’t alone. 🙂
CHAIR YOGA; works and mostly do-able; also seen on PBS as EASY YOGA FOR ARTHRITIS……
Thanks for this Kelly. You made so many great points, especially about the jaw & sternum joints. Before RA I walked regularly, was an active mom, took my kids to the park, drove, went to beaches & lakes, enjoyed camping ect. Now I struggle just to do the grocery shopping. The act of picking things up and putting them in the cart leaves me struggling to turn the steering wheel on the way home. The pain in my hands, wrists, & especially shoulders can be intense! I miss being outside, going for walks and being active. As much as I would like to exercise, it just hurts too much. Every joint in my body ;(
me too Ruby. ever single joint. every single day. and if I say so it doesn’t seem believeable – I’ve seen enough eye rolls for a lifetime. I’d much rather be doing yardwork & going camping than just spending all my time & strength managing pain like being in labor… dare I say “OF COURSE”?
I don’t have any trouble with the concept of every single joint, every single day. I had joints that hurt that I didn’t even know I had. I don’t think that I my RA was as severe as many that I have heard described here and the pain was joint after joint, day after day, night after night. Endless, everywhere. Could I exercise? You must be kidding! I could barely drag myself through the day and manage to get done the bare minimum that needed done.
Now that the meds are finally working, I am feeling well enough to exercise but, wow, when I do, some of these joints really start to act up.
Your concept of the usage principle certainly is right on.
I am so sad that nothing has given you relief. That constant pain is so awful and so wearing. I hope that soon some treatment will be more successful for you.
even tho I know I’m telling the truth, the eyerolls still affect me. and the lack of empathy from everyone except my very closest circle – my kids and my bff. so, having another person say they believe me or that they were there before too still brings tears to my eyes. Its so bad and so invisible – the only choice I have is to ask God to use it for good – there is no escape from the pain or weakness.
No joke, some days my exercise consists of going from the bed to the kitchen. Then the cup to my mouth for coffee to help wake me from the drugs that help me get 2-4 hours sleep. then I let my dogs out what seems like 50 times a day although really, about 6. I then move around vacuuming, doing dishes, playing with the critters, laundry… etc. I DO EXERCISE every single day. I just don’t sport impact exercise nor will I. I’m the only who pays for it so I’m the ONLY one who gets to decide what is enough, too much and not enough.
Hugs
Tammy
amen! I’m going to quote you next time I’m asked.
Absolutely fantastic post, Kelly! I keep having people tell me about exercise – I use a power wheelchair, moron, how much exercise do you think I can do? They also suggest I should do range of motion exercises and I finally figured out a retort that shuts them up: my life is a range of motion exercise. Whether I make a cup of tea, feed the cat, type, brush my7 teeth, make lunch or all the rest of the tasks that make up my life, I use my body to the range it can. Sometimes I blame the statements on a lack of imagination or a lack of knowledge, but most of these medical professionals should be ashamed of not knowing better.
Thanks for the opportunity to rant. 😉
Lene, I’m honored that you think I did the subject justice. It is such a hot potato, but we, the patients, are the only ones who actually know this disease inside out, so we are speaking up about what is real.
This post is an amazing meta-review of medical advice and real-life experience – proving the case for “patient-centric” healthcare. With your permission I’d like to share it with other Health Activists and the larger healthcare community; not just for its content but as a best practice example.
Stay strong, RA Warrior. You are changing the world.
Thanks very much, Jack. Yes, you are free to share.
Exercise is one of several points of contention between those who live with the disease and those who have held the reins in healthcare. While I’ve covered these topics online the last couple of years, I’ve seen some adjustments in content on other sites to be more reflective of our reality so we know we are beginning to have impact.
This is one reason that information cannot continue to flow “Top-down” in healthcare, but must be a two-way street of communication. This is one reason for our new non-profit for RA.
Every night when I say my prayers after I have prayed for everyone on my list, I always ask God for one small favor, to let me wake up and have just 1 day, not a week, not a month, not a year, just one 24 hour day in which I feel normal again so that I can have that one memory to carry with me for all of the bad days that I know will follow. Now I will add to that prayer that I promise on that 1 day (if he provides it), I will swim 2 miles and walk 5. Making it through the day with a smile on my face is about all of the exercise this girl (with RA) can muster. Thank you Kelly, as always.
I agree with Kelly’s post here but not exercising is not going to improve your RA either. In fact, the more weight we carry and the weaker our muscles, the more stress it puts on our hips, knees, ankles and feet. I have active RA in more joints than I can count and its been this way for well over 10 years. I also have torn menisci in both knees, a recurring Baker’s cyst in one knee but I try to exercise when I can. That includes walking, light running, weight training and yoga. Sometimes it seems like my RA will never stop flaring but other times, my RA is better. You have to listen to your body but the truth is, IMO, that exercise can make you feel better overall, it can, over time, lessen the stress on our weight bearing joints and can increase mobility and flexibility. For five years I did not exercise at all. I have two children (age 6 and 3) and it was all so overwhelming to work full time, have RA and care for two little kids. Life is easier now that they are a bit older, I have begun regularly (as regularly as you can with RA and two little kids) and I do, honestly feel better. I don’t exercise during active flares but when things calm down a bit, I get back to it. I’ve found, that for me at least, regaining some strength in my body again has improved some of my confidence that was taken away from me by RA.
Connie, I think we agree. You said you don’t exercise during “active flares” – that is my exact point. So we agree. There are about 30% of us for whom “when things calm down a bit” never happens. And many of those like Ronda explained who already have permanent damage that prevents certain movements. And those represented by Lene who can barely perform personal care.
I’d give almost anything to be able to do what you do. I went from being able to do 100 pushups to not being able to lift my own purse – in 1 moment. I’d certainly not let my other children take care of my baby for me if I could have done it myself. It is a horrible thing to become disabled overnight with RA in every joint and then not have a moment’s break from that for 5.5 yrs and no response to medication. But the thing is that I’ve picked up the pieces and continued to live, but I still cannot run. I tried. Walking is hard. I walk as much as possible every day, but that is sometimes from the bed to the sofa. What I really hope is that anyone who hasn’t will read the first 4 posts in this series — since I didn’t want to make this article too long to read. We should all gain understanding of one another if we want the world to understand too.
I think the weight thing is a separate issue, but a good point to talk about. It’s another mis-understood point. RA is a wasting disease so when it’s very active, it causes weight loss – which is actually kinda scary. There are tons of comments here on the blog about people who lost scary amounts of weight when their RA was in its initial full flare. When Dr Phil said last month that people can get RA from obesity, I started to Tweet @ him. What followed shocked even me: Dozens of Tweets over the next 2 wks of people saying how much weight RA had caused them to lose and how awful that was.
When patients tell me their doctors tell them that their RA problems are due to weight, I tell the patients that even very thin people have the same pain & erosions & disability from RA. Being thin is actually a liability with RA, statistically (mortality-wise). Of course extreme obesity would cause disabitly too but that is not what this discussion is about. Weight is a separate issue from exercise but it is equally misunderstood.
Another separate issue is that some medications for RA cause weight gain eg Remicade, Lyrica, prednisone, and others.
When I say that I wish the other exercise posts would be read with this one, it’s because I quoted lots of scientific references and said things like this:
If I ever get a moment when I’m “able” again, I won’t use it to clean my dirty house. I’ll run on the beach or play tennis or catch with my kids again. Although they are mostly grown now.
-and-
Every day, I leave it all on the field, doing the most I can every minute. It’s the only way I know how to live. The thing is, I’ve realized most people with RA live that way. I believe them about that.
My rheumatologist tells me to walk for exercise. If I walk a lot, I am down for several days recovering. I walked more this weekend than I have walked in the past two years. Four days later, I am still suffering through the consequences. This time, the experience outweighed the flare I am now having. But, this was a very special occasion. These occasions don’t come along very often. My knees, ankles,shoulders, wrists and every other joint in my body are very thankful they don’t!! This time the usage principle and spoon theory were tested to the max. But, I had FUN for the first time in a very long time!!!!!!!!
Exercise is a real SORE spot with me. I am beyond sick and tired of doctors and friends and family and articles and commercials telling me to exercise! Oh yes, I bought into it at first. I joined a club and started to swim. I love to swim. Let me start with trying to put my swim suit on. OUCH! Taking off my suit when wet, double OUCH! After almost a year of trying to swim with braces on my wrist and taking it easy, I finally was no longer able to move my shoulders..Ha, jokes on me. I did spend the first year or so with RAD being so completely disabled, I needed help to get out of bed, help in the bathroom, help getting dressed, crying in pain each morning after little sleep. Even after eleven years with RAD and tons of meds, I still have some days like this. Exercise to me now is, being able to do a few things all by myself, such as getting out of bed, taking a shower, getting dressed, doing some small chores, maybe driving a short distance and going out for lunch. If anyone thinks I enjoy sitting in my stupid chair half the day, exhausted, on a beautiful day when I want to be out in the garden or getting my house cleaned up a bit instead of just looking at the dust is crazy! There is one thing I do think is important for people with RAD, and that is to keep moving as much as you can without hurting yourself. If anyone tells you to exercise, tell them to crawl in your body for a week or so and then come back and try to tell you to exercise. (Insert angry face here!)
Love this conversation!!! I was diagnosed three years ago in July of 2008, after the loss of my Mom in October 2007 and my Dad in January of 2008. At that point of my life I weighed 140 lbs and I was wearing a size 8 pant and working as a handyman doing roofing, painting, plumbing, and anything to do with remodeling. Weekends involved hiking in the canyons, swimming, gardening, fishing, walking the dogs, and tons of outdoor fun. I never had a regular exercising schedule; I did not need one. I maintain a healthy active life through daily activities and always proper diet. I can proudly say that my boys love squash of all kinds, beets, and spinach!! Yep, Spinach!! When I became sick and had to go on steroids all I could do was watch my weight increase and now I weigh 180lbs and I wear a size 12. I could not fathom introducing an extensive workout program to lose weight or regain my strength. I have continued to do all the activities I love like gardening and hiking but I just have to try to plan around my bad days, which everyone knows that is easier said than done. Of course I have done my research and found yoga to be helpful, I just incorporate it in pulling weeds in the garden or while I am in the pool. I remember when I still did not know what was wrong with me and I was so tired of be cooped up in the house so I decided to waddle my swollen feet down the road. Why not, it could only help to walk! I know you are all laughing at me!! I just wish people could view the inner determination that we all have when it comes to this disease and understand that we do everything humanly possible to improve our situation.
Good word, Shauna. The last sentence is key! I also wish that everyone would accept that. When we say we are doing our best or our utmost, we are. When we say we can’t do something, we can’t.
—
Gardening was one of the hardest things to lose. I know I’ll never pull another weed because all of the joints in my fingers are loose and unstable thanks to the way RA affected the tendons. I did not give up weeding easily. It was after many times of trying to do it & being determined to do it – that I had to admit that the weeds did not come out – only my fingers did. Then being unable to feed myself or brush my teeth afterward was not worth “proving” I could try to weed when I really couldn’t any more.
Thank you! Such useful information! I always had questions around flares and exercise. A lot of this is what I thought but it’s nice to have it validated. Great site!
I really relate to the statement that RA patients would love to go back to exercising like they did the day before they got RA. I was walking 3 miles a day and weightlifting twice a week. I was prob the most fit I had ever been and then lightening hit (RA) and I was sick, sick, sick. Now I’m better. I can wear clothes with buttons. I can put my own socks and shoes on. I can work a regular work day. Exercise? Not so much.
Excellent Kelly, very well-written, thank you. I once was able to do, and enjoyed doing so, every sport feasible. It is now a chore to walk to the mailbox at the end of my driveway. I don’t know how many times I have been told by a doctor that if I exercised, I would get better. One of these doctors, was adamant that I was exaggerating my problem. I said to her “you think this is how I want to live? You don’t know my past. I was very active. I would LOVE to be able to enjoy walking to my mailbox!”.
I am almost exactly one year from my the-day-before-RA day. Like many of you, I can identify that day, and in fact, have a receipt from an ER visit that day. Mine hit with an attack on my vascular system, sending my until-then-normal blood pressure to dangerous levels. I’ve said it ad nauseum, but I was jogging 3-4 miles a day, kayaking, and mountain biking on single tracks before that day. I lifted weights. Before I was diagnosed and went through the usual list before starting Enbrel, I had lost 34 pounds even though I spent most of my time in bed, no longer exercising. Just before beginning Enbrel, my weight loss had accelerated and I was losing 1 or 2 pounds a day. I knew Enbrel was working at least a little because two days after I started it, I stopped losing weight. I don’t jog any longer, of course. Now I spend time balancing out what’s most important for me to accomplish each day in the few hours when I can be upright and not in bed because whatever efforts I make are going to result in needing to go back to bed. Is it more important to work a little on my writing or sweep the rolling dust bunnies? I had my husband bring our old exercycle into my office. On the days when I can, I climb on it, with no tension on the flywheel and pedal for two or three minutes at a time. Some days I can and some I can’t, but I can guarantee that’s more of an effort for me than my previous 3-4 mile run every day used to be. I’ve had a doctor–not my rheumy, who is wonderful–ask me if I was the kind of person who didn’t like to exert much effort. Another–also not my rheumy–asked me if I were a Type A person and assured me that’s what’s wrong with me, that I put too much stress on myself. Either I’m lazy or a Type A person, depending on the doctor! What I really am, however, is someone grateful for this site and others, for those who comment with just the right words at that moment I most need to hear them.
Hi Linda. What a valuable comment.
I love how you explain it all, but I want to highlight this extraordinary point you made:
“…but I can guarantee that’s more of an effort for me than my previous 3-4 mile run every day used to be.”
I better not comment about those doctors – I think I’ve met the first one a few times. It just shows exactly what I’ve been saying: That they don’t understand.
Oh…exercise… This past April I was feeling decent – not better by any means, but not as bad as I have been in the past, and my roommates and I decided to take belly dancing lessons. I figured it would be a good way to get a work-out in, just once a week, doing something fun, with low-impact. I figured that since it was mostly just muscle control, I’d be fine. NOPE! I was okay for the first two months. Then I stretched my left hip a little too far (though I had stretched it further in the past plenty of times) and it hasn’t stopped flaring and hurting since. It’s been almost 5 months. I have a hard time sitting, standing, walking, laying on my back. The only thing that gives me relief is laying on my stomach. Then just the other day I got frustrated with not exercising in so long and decided to do the back exercises my old chiropractor gave that helped some. It was less than 5 minutes total and I am still hurting and massively fatigued because of it. Exercise? I don’t think so. I agree with everyone – daily living is exercise enough for me. My body doesn’t agree though – daily living is often TOO MUCH exercise. Ugh. I really wish more people would understand this.
Rachel,
Thanks so much for the entertaining & instructive comment!
There is a group who understands & believes perfectly: those of us who have lived it!
We don’t all have the same experience – I know a woman with RA who does belly dance & run & other things. Her daily life is nothing like mine. But she has serious internal problems that have hospitalized her; in no way do I minimize her disease – It is just different from mine. Her joints allow her to do things that mine do not – at least right now.
That said, you bring up another critical point – the one of recovery from the injury of activity with RA . People say that we need to have a recovery “day.” Of course, whatever is wrong in your hip did not get better in a day. When I flew to AZ for a meeting of others with RA (mostly JRA), the chairs were killing my knees for days. Then the flight home put my knees over the edge – they stayed swollen & would not straighten for a couple of months. The are still different than before – the trip took a toll no one could have expected. I knew I was pushing myself & there was pain… but I did my utmost – which we tend to do – perhaps to our detriment at times.
Hi, Kelly!
Boy, do I ever agree! I’m one of those early “Baby Boomers” who has had a knee replaced. In my case, it is because of the pain and stiffness of RA – not to mention the grinding, locking and popping. My surgeon tried to talk me out of it, but I prevailed. Afterward, he said that my knee was much worse than it looked on the X-Rays. So I’m now one joint replacement down and several more to (possibly) go. Let me just say I am now more mobile than I have been in over 5 years, and I’m only 6 weeks post surgery! I’m doing my PT faithfully – that’s the key. I’ve been so used to pain that this was a piece of cake! Now I’m able to go out and walk Emmy just for fun! I walk a little farther each day – keeping my other knee and my hips under careful watch. They still flare – but my new knee doesn’t! Yay!
Has Tanya done the Part II of her real exercise for RA yet? I haven’t seen it. I hope she can do that because the exercises she showed are wonderful. http://www.youtube.com/user/KellyRAWarrior#p/u/5/MWusuUvBfB4
Cheerio!
Elizabeth
This survey strikes me as a case where there was a pre-existing opinion – RA patients use their disease as an excuse not to exercise.
Maybe that time and energy would be better spent surveying members of the medical community who offer wildly varying advice and opinions on exercise with RA, and determining why some docs understand RA pain and others don’t.
Personally, I try to exercise *When. I. Can.* I always feel judged and labeled “lazy” when I read articles like the one you quoted. I’m a former competitive amateur athlete whose life revolved around exercise and activity. Now because I’ve been diagnosed with RA I’m suddenly afraid of exercise-related pain? Hogwash!
I’m sorry, but I can’t help but laugh at this survey. Yes, the sunshine link was funny, too…but…let me get this straight: they had to actually conduct a scientific survey to get to the bottom of why RA patients don’t exercise when they know it’s “good”? Hmm…why might people who are in pain and can’t bend their joints not exercise? Really? I think this falls in the common sense category.
In all seriousness, I do think better patient education from healthcare professionals on when/what types of exercises to do is crucial. Even on good days, running doesn’t seem to do my knees any good (hey, there’s a perk – I hate running – now I have an excuse =P). They need to really evaluate where a patient is at and make recommendations based on that. Obviously somebody in full flare is not going to be able to do much–just get through the day and we’ll call it a victory. Stretching and yoga does do me a lot of good when I’m simply stiff and mildly sore, though..so that’s where I usually start!
I did find a way to exercise, but not sure how much it is helping. I am taking a kinesiology class in college. The only one that was available online was Walking and Jogging for Health. Well I have a treadmill, thought I would be able to get through a 16 week class. HAHAHA, what was I thinking??? Anyway the Lord was looking out for this fool, my treadmill broke after two weeks(I was already breaking!) My instructor was nice enough to let me use a gazelle. No impact at all. It has helped my “Fibro” pain, but my ankles and knees aren’t happy since I have had to increase time. I think if I can stay under 20 minutes a day I would get some benefit from it without the pain. Worth a try.
Many valid posts are made in this post and the comments. I, of course, can not feel what you are feeling, nor tell you what is “right” for you. I can only speak for myself and my journey. I started with an Arthritis Water class designed and sponsored by the Arthritis Foundation. My initial progress was very slow. Some days I could only walk back and forth in one lane of the pool a few times. But the warm water did help. I stuck with the class the best I could. Sometimes, when I was flaring, I wouldn’t go at all. By the end of the term (10 or 12 weeks) I was improved and could do some more of the gentle exercises. By the second term, I was almost able to keep up with the class. Granted, it wasn’t aerobic exercise, but it was a gentle exercise that was done at one’s own pace. Warnings were given for people with hip and other problems. It was a class that whatever you could accomplish was okay. I highly recommend this class. It was inexpensive enough, only a couple dollars per class. Since I was never very good in doing athletic type stuff (the roots of my disease date back to early childhood) it gave me a feeling of accomplishment – whether I could do a lot or very little. I also started swimming. At first, it was only a couple of strokes. As I progressed, I did manage to swim a half a lap. I did increase the swim somewhat, but I would have setbacks when I flared. I would then have to back off entirely. It’s not what a lot of people consider exercise, but it was a lot easier to move my joints in a warm water pool.
The “warm” water pool in our area is a “blazing” 85 degrees. I go into the water and my joints lock up and my muscles go into spasm. The arthritis pool at a medical center 35 miles away is 92 degrees. That 7 degrees makes all the difference. But the cost to join the Hospital Athletic Club, and the cost of the gasoline and the cost of my energy are too high. I end up feeling more poorly than when I went, and I have to choose cheaper food (that is higher in fat and salt and calories). I wish I could buy an “endless pool” to keep at a higher temperature, and exercise at home. But I’m learning exercises at physical therapy that will help me and even some that I can do even during a flare. Now to get some motivation…
Thank you for posting this Kelly. For years now I have exercised & eaten healthy. The only time I was above “ideal weight” was when on prednisone & mtx after initial dx. Even then I kept up my exercising, fighting fatigue, going to classes & taking care of my then elementary school age daughter. After pred & mtx, I contd to exercise to lose the weight- Pilates & tennis have always been my favorites. I was in nursing school at this point & thought I was being really good to myself being that I was toned, felt better, etc. All it was though was a remission.
Last year, the joint pain got worse- my bf’s mom has osteoarthritis so she continually exercises & kept encouraging me to do so. I kept doing yoga, some pilates, played tennis (on the wii mind you!), but I would feel so horrible for days afterward. I contd to just get worse. She could never understand why her methods never helped me or why I would be curled up on the sofa in misery, not even able to take a shower.
Now of course my exercise consists of wow- getting out of bed! On good days, few & far between now, I do light housekeeping- I still have to creatively drive to the grocery store. I would absolutely give anything (except my soul!) to be able to do the things I did before RA. I miss swimming, long walks, playing tennis (on a court) & cleaning my house top to bottom without feeling any spiking/searing pain. Walking to the kitchen is winning a marathon!
Every one of us exercises in our own way each & every minute of each & every day just by living with this destructive disease. Sometimes it’s just by taking a single breath.
:hugs: to all of you courageous warriors
Prayers to all
Thank you Kelly! I can’t explain why, and I don’t have to because I know you and other readers understand, but when well meaning people ask over and over again if I have considered exercise or why I don’t exercise I just want to scream! I would if I could! First though I would go out with friends, take an airplane ride, run with my child, go dancing, and so on. Then I would go to the gym regularly after I had a taste of all the other active things I am missing because of my relentless RA, pain, fatigue, and so on.
Thank you and God bless! Your warrior attitude is amazing.
I, too, am in a wheelchair as a result of extensive RA damage to feet, ankles, and knees. Even after seven years of not being able to stand or walk, I still dream of how wonderful it would feel to run. I was never an athlete, much less a runner, but the memory of having a stronger body and pushing myself physically without pain or stiffness brings longing and sadness. Since I have also developed congestive heart failure as a result of the RA, my cardiologist continues to press the importance of exercise for my heart, as if I were like all her heart failure patients. My rheumatologist has even prescribed liquid morphine for me to take BEFORE any kind of wheelchair exercise so I can work out with less pain! I refuse to comply, in my own best interests, because my RA has been relentless for over 20 years. I have more than 20 dislocated joints, despite years of low impact exercise, aquatic exercise, Qi Gong, every type of medical treatment, etc and need to preserve what little function I have left rather than jeopardize them with potential injury from exercise.
Thank you for your honest, insightful comment.
There’s new research that your cardiologist could read about Rheumatoid disease. This is a cutting edge area of research w/ RA. The Rheumatoid heart disease is not caused by the same factors as other heart disease & does not behave the same way.
Excellent! Thank you again for highlighting this topic. So many folks do not understand. But my rheum does. He cautioned me to be very careful.
I think the problem of reccomending the exercise protocol stems from arthritis organizations and medical establishments STILL putting rheumatoid and osteo arthritis sufferers in the same treatment catergory.
I shake my head everytime reading website suggestions of doing yoga,lifting weights or biking. Biking?? Pfftmy knees would lock up after a half a peddle turn. When you cant stand or kneel or your range of joing motion has been reduced most exercise is undoable. Swimming or resistance bands are far better choices for RA warriors in my opinion.
Yes. There is ignorance of the various aspects of disease activity – such as the affect of rheumatoid on tendons. Another problem is how varied are the experiences of people with RD. There are many with milder disease or RD that only affects certain joints.