Should Rheumatoid Arthritis Patients Exercise?
Can we talk about exercise?
There is an elephant in the room. Not a cute and helpful one like Horton. It is one of those proverbial elephants no one wants to address. It’s a big and annoying issue that won’t go away, yet everyone tries to ignore.
I do not fancy myself an elephant tamer. However, I have a constant urge to state the unspoken. So, let’s get this out in the open.
Exercise is a touchy subject in the world of Rheumatoid Arthritis.
Proponents of exercise strongly advocate it. No one I know actually opposes exercise, but it does raise several questions. I wonder why I do not hear them asked.
Early in 2006, when I began to suspect that I had RA, I began to read research articles about it. I was leery of internet Quackdom, so I limited myself to medical universities and hospitals like Cleveland Clinic, Mayo, and Johns Hopkins. Soon, my search expanded to other websites like Web MD and About.com. I looked for legitimate information, not fairy-world cures.
I read about protecting my joints by not doing things that caused increased pain or stress. That sounded very important to me, so I printed off lots of pages about it. Later, when I began to hear how some RA-ers are pressured to exercise, it struck me as odd. The two ideas are in direct conflict. I cannot protect my inflamed joints from use at the same time that I am using them to exercise.
I read every theory I could find to explain the causes of Rheumatoid Arthritis. I did not read any which pointed to laziness or lack of exercise as a reason for RA. To be blunt, but if sloth did not cause my RA, then workouts will not cure it.
My doctors have prescribed vitamins, chemo shots, funky Biologic drugs, rest, anti-inflammatory medicines and even a high Omega-3 diet to attempt to gain control of my RA symptoms. Funny, they have not prescribed exercise. Why not?
It would have been an appropriate prescription if I had come into the office with one of many other conditions. But, I was disabled by RA, not idleness. Some people are truly disabled by RA. And they cannot exercise for either fun or strength because of their functional status.
There are other people who have RA, but who are not disabled. Many people with RA have times between flares—however brief—when they can safely exercise. And a few others actually have only a few number of joints that are affected. Of course, they can exercise using the unaffected joints.
Because I always loved exercise, I don’t feel comfortable defending this position. But, frankly, I am never comfortable anymore. I am in pain. It’s not pleasant or popular to say so, but it’s true.
I am very uncomfortable to sound like I am opposing something as wonderful as exercise. I half expect to be stoned. But, of course—
I am not arguing with exercise
I am arguing with the preposterous proposition that if RA’ers would just exercise, they would feel better or get well. That is so absurd that I can’t think anyone really believes it. If they do, I am willing to walk in their shoes. Can they stand in mine?
I wish that people with RA would not have to ever defend themselves about exercise. We did not get Rheumatoid Arthritis because we were less active; we became less active because we have RA.
Recommended reading:
- Rheumatoid Arthritis Exercise, Part 3
- Should Rheumatoid Arthritis Patients Exercise, Part 2
- The Truth About Rheumatoid Arthritis Will Be Told! (About exercise)
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
- Rheumatoid Arthritis Makes Things Difficult
I've been pretty fortunate in that those around me, and my close friends at yoga and pilates, know that when I am unable to exercise it is through no fault of my own.
For me this is a rough issue, as I've worked so hard during the past two years to improve my physical fitness. Now that my RA has progressed, I worry about not being able to do more, but in the end I am happy with whatever I am able to do.
My rheumatologist continues to recommend exercising in the pool, but I've never been a big fan of getting in the water other than in my bathtub…
This goes right back to the old "Use it or lose it" comment. what people don't seem to understand is if we use it, we can possibly lose it. I would love to be able to start running again. I would love to get into a really good exercise routine. I so badly want to go and buy P90X. I feel that great! I am getting an opportunity that others may not get. But at the same time, I am terrified. I still worry that one of these steps I take is going to result in the sharp stabbing pains in my ankles coming back. I worry that I may cause a flare if I do anything strenuous. I'm afraid that by doing yoga I may stretch some tissues the wrong way. I still worry about joint damage. Tell me, how do you enjoy even walking around the mall with all that worry? People still tell me I should exercise. Well, here, borrow my painfully swollen joints for your 10 mile run then we can talk when you get back.
Amen sister
RA Guy,
BWHahahaha!
Yes, swimming is awesome! And the few days that I could do it, I was so blessed!! Felt on top of the world.
May you be rewarded for your efforts to be fit!
Hey GF-
Is this a deja vu moment? Have I read that somewhere before? 😀
Yes to the trading places thing. Yes, yes. Can they walk in these shoes?
Hey RA Guy! You're lucky you got understanding peeps around you. My old Rheumy actually said to me that if I lose the 50 pounds I have to lose, it would make the RA more manageable. Well duh! Iknow I need to lose 50 pounds. Was it really her job to point it out? I think not. What I should have said is that if she was doing her job and actually finding a med that worked, maybe I could do things like, oh I don't know, walk from one end of a room to the next
without having to sit down on the way. I'm pretty sure that would burn off a few calories!
I understand completely about worrying about what I can and can't and shouldn't do.
Have you ever thought of getting a hot tube? We all know how great a hot shower feels, right? Hot-tubbing is highly reccommended for us and many insurance plans will pay for some or all of one. You'd have to get with your rhuemy and work on that together. I highly reccommend you check out http://www.thermospas.com and look at the exercise tubs. They are really long and you can swim in them! And I think you can choose the jets you want. But the tub is cool. They also have a healing spa. It's square but really deep. The tub I'm looking at is on the site http://www.hotsprings.com and it's called Vista. It has a ton of jets, which is why I like it. Hopefully I can afford it!
Hi Kelly-
I saw this on FB and needed to respond, but I got alot to say! First of all I understand wanting to be able to be active and exercise from an RA perspective. I am lucky that my case is 'moderate' yet not quite controlled. I do have days/weeks where I feel the anger along with the pain and exhaustion of not being able to do close to what I used to do. I look back at my former self who was training for a mini-triathlon kicking butt at the gym, keeping a clean home, being a good mom (the mom I wanted to be), mowing the lawn and doing lord knows what else in a day while also pregnant. Today I can do a mere fraction of that and it saddens me to no end. Knowing that my house is a disaster, my kids' patient, fun and playful mother has soured into an short tempered and seemingly lazy shadow of her former self is beyond frustrating. I now have to choose between all of those things and some of them (like running etc) I can't do anymore. It totally bites when physical activity is one of your 'mental' outlets and you are not able to do it anymore. It also sucks when you gain 50lbs and 5 sizes because you physically can't do what you used to do.
What I do know is this though. I feel a ton better when I am able to get out and just walk. It helps my mental angst and slight depression. It also helps my heart. And since depression and heart issues are common with RA then maybe I'll be able to beat those things, as well as loose the excess weight I've been carrying around since my world fell apart when I was diagnosed. That is if I can keep away from the m&ms…
Hugs to you because yes, it totally SUCKS ROCKS!
Heather
I am so glad you said that about souring from a fun, playful parent into a short tempered, seemingly lazy one. I am a mom again. Had the little one when my oldest was 16. I was planning to do so much more with this one since I wasn’t still in school and working and having twelve other things to do. Now most nights I get home from work and I’m exhausted. I shuffle past the crafts and paints I bought for us to do together and pray for bedtime so I can lay down. This is not the mom I planned to be and I am SO frustrated! It makes me cry at night as I am a single mom and she doesn’t have a “normal” other parent to pick up the slack. I try to involve her in the things I can do, but I wish I could play baseball outside with her and soccer etc. She is two and a half now, so she would just be thrilled if I could chase her around for an hour. I find myself shoving gobs of prednisone into my mouth on the weekends even though I’m supposed to have stopped taking it, just so we can have some special mommy time. This is kind of a nightmare. My rheumy asked if I wanted more kids, b/c that would make a difference on what medication we tried. I told her not unless you can make me jump on the ground and roll in the dirt again….. I hate having to negotiate with myself on whether it is important enough for me to get down on the floor and play dolls with her…
Just want to say I enjoyed all the posts in this thread. I agree wholeheartedly!! And can say “Ditto” for me! I have had RA for 12 years now or at least diagnosed 12 years sgo…I am sure we all had it for some time before we actually were diagnosed! I have a wonderful Rheumatologist! He is very understanding and has always told me exercise is good but if it hurts, stop. Do what you are able to do…he does not however promote the use of weights of any kind! He also has encourages (or puts up with) my being in control of my disease and my treatment…we work together on what meds to be on and when, what avenues to take or try…he is very understanding and on the cutting edge of research! If I feel I do not want to be on something I tell him and he listens to my reasons and then he tells me his reasons and we either meet in the middle or I do what I FEEL is best for me! I too was very thin, in shape and active prior to RA…I am still pretty active considering but those that did not know me prior to the last 5-6 years say…you look great! You don’t look sick at all (until they see my right wrist/hand which is pretty deformed at this point) but those that knew me prior know the change that has taken place. I do not exercise regularly, I want to and I should! I feel good when I do. But everyone is correct in that you should when you can and not if you don’t feel good…no pressure. Do what makes you feel good! I just think for myself that I sometimes use my RA as a cop out on the exercise. I hurt daily, but I have enough drive and pain tolerance that I can do other things when I really want or need to so if I am having a good day I NEED to not cop out and take a short walk, take a swim, get on my recumbant bike whatever…within reason…that’s me…not you! I do have a tendancy to over do it though and do pay sometimes with a flare…however sometimes I don’t do anything and pay with a flare…so this brings me to the opinion I am going to do what makes me feel good, period! I would say I have moderate to severe RA, always pain worse flares at times…but I think everyone just needs to find a way to deal with the RA and function to be happy! It is about quality of life and so we need to change the things we do, we are a little heavier, we have pain…ok we are all in that boat! Everyone has to have something I guess, I feel actually fortunate I have RA and not some other horrible disease as some people I know do. It is bad, but it could be MUCH worse! I am thankful for each day I can participate in the lives of my friends and family and enjoy what I do for a living (real estate broker)! I still do the art and the crafts I love, I just have had to make adjustments to what I do, do…Just because Life changes, does not mean we can’t enjoy it! I hope everyone finds a way to cope, enjoy and do a little something of anyting you would like to do even in a reduced amount!! Good day and God Bless!
Wow, Heather.
Thanks for sharing that. I start to think I am immune to tears because I've heard it all; ha.
You brought up so much I wish I could have said, you wet my eyes.
I choose my words carefully, because I want folks to read them… But I wish people knew about the times I have tried to use my old "willpower" to "get 'er done." RA will not be ignored. More than once, I have used my iron will to try to exercise and found myself unable to move well for days. RA plays by different rules.
While your walking is far from the triatholon of before, kudos to you to do what you can!
I love to walk on the beach (actually, I prefer to run), but when I do, I pay a high price. Most days, I limp, shuffle, and drag myself everywhere I go. But I do not give up.
Very well said! I can't stand it when people tell me that if I would just exercise I would feel better. I want to reply and say, well, the next time you haven't slept in a couple of days, jammed all of your fingers and toes, sprained both ankles, your knees are the size of watermelons, have a slight case of whiplash, and you feel like you have the flu — I will come and get you so that we can go for a jog – it will make you feel better. 🙂
Thanks!
Courtney
Thank you Courtney!
When I was first demonstrating the symptoms of RA and Fibromyalgia (no dx at that time), I was serving on the board of our local YMCA. Having been a very active member who usually worked out more than an hour 6 days a week, they knew me well. The training manager told me point blank that I need to exercise. His ex-wife had developed RA and couldn't even do laundry or lift a basket and then she started walking and in a month was doing everything she wanted to.
I tried….it did not work for me. Now I have a dx, more pain, more stiffness and usually a cane. Yeah…exercise is the cure all.
HA! Courtney that was GREAT!!! Can I use that line? Angie
Well said. I am wondering if anyone advised swimming? I was a competitive swimmer, and nowadays I really need exercise that does not injure my joints too. I have found that swimming is the one exercise that really gets my heart rate up and feels great on all other areas for the lack of impact. I also use a natural pain cream called Topricin that feels wonderful. It is safe and it helps with any inflammation. Again, great points here! Caroline
Robin, Thanks for the excellent comment.
About the guy's ex: I wish people knew about the various courses of RA. Some people get remissions, either permanent or between flares. And no one knows what causes the remissions. So, they may credit exercise or vitamins or their favorite purple t-shirt. Who knows?
Happy for them, but if it doesn't happen for me, am I to be blamed?
Caroline,
When I can swim, I am in heaven!
For the reasons you say, it is wonderful.
Maybe this sums up my view: If you can, you should. If you can't, you shouldn't.
Sometimes, I cannot lift my hands above my head… But other days, I can manage it.
I was very active before RA hit and I try to be as active as I feel comfortable with whatever my symptoms of the day are. For me, I want to continue doing whatever I can because I believe the stronger my body, the easier it is to deal with the flare-ups. But, there are more days than not that all I can do is take a walk with the dog and call it a day. But, hey, I am still doing that!
I did have a guy tell me the other day that if I just worked out I could get rid of the swelling/pain in my knee. I was in shock. I did share with him what RA is and came to find out he didn't know. 🙂
Way to go, Cathy! On all counts.
This is such an important topic. I'm new to RA diagnosis, but not new to the symptoms.
My primary care doc stands by the AMA recommendations that everyone needs 30-minutes-a-day exercise, 6-days-a-week. So before I was diagnosed, I did what I could do, when I could do it, pushed myself to do more, then paid the price by being in pain and exhausted for the next two to three days.
Then RA symptoms flared, and I could barely function, much less do any exercise. Finally found a good rheumatologist and was diagnosed with RA.
Primary care doc still doesn't get it. She sticks to the "You need to exercise…" ADA guidelines. I wish she would read this blog, Kelly! (I'm too chicken to take it to her, though.)
The point of my post is that under-informed/misinformed doctors push RA patients to do things that are sometimes impossible, sometimes even DAMAGING to the body. For me, when I couldn't accomplish the impossible (not yet knowing I had RA), I felt like a failure.
People struggling with RA do not need excessive guilt placed on them by the very people they turn to for help.
Thank you, Kelly and all who have posted, for validating the reality of RA limitations we do not ask for but have to live with!
Caysea
Caysea, thank you for sharing that!
You are right about the "excessive guilt" – how is that a help? I keep asking the same questions. Why is the same activity which they warn will be destructive, suddenly considered "healthy" if it's in the context of exercise?
For example, I can't lift heavy cans, so why would it be good or "safe" to lift little weights that weigh the same thing? Some of our members here use wheelchairs or carts; should they go running? Obviously not.
IS IT OK IF WE SAY IT THIS WAY: If you can do exercise, you should. If you can't, you should not.
Hi Caysea. I'm Angie. Nice to meet you.
If I may offer up something…my doc (pcp)was the same way. I was actually diagnosed by an urgent care doc while I was camping.
I ended up finding a new pcp. It wasn't worth it to me to continue to try to educate my doc when he wasn't willing to listen. I needed to find someone who was going to treat me so I walked.
My new doc (pcp) is great. She listens and works closely with my other docs that are conducting a drug study I'm doing. I also got rid of my rheumy for the same reason. She was unwilling to liten, unwilling to try anything but methotrexate, and she made a couple of big mistakes with my treatment that could have really harmed me physically. I was on methotrexate for 10 months with no changes in my RA but my side effects were horrible. She just kept changing the dose.
I still haven't found a new rheumy but I feel much better not having the one I had.
I know that dumping a doc isn't easy but you should talk to your rheumy and get their opinion. Maybe they can reccommend a pcp for you.
i had no idea that what i had was RA. the doctor told me it was a tennis elbow. i remember "over-using" my hands on the cellphone and PC, so i thought that might've been it. soon the pain was all over my body. the steroid injection wasn't working. the pain relievers made me quite dependent. i hurt badly if i didn't take them. eventually, i stopped the pain relievers and went to a physiatrist. the Physical Therapist taught me stretching exercises that slowly relieved me totally of the pain, except for my elbow, that i could never straighten, until now. the stretching exercises helped me in my joint pains in the legs, ankles, and everywhere else. that was 5 years ago. i haven't had any episode since, until early this year. i tried to do the same stretching exercises, went to the gym, jogged, etc. but the more i exercised and stretched, the more inflamed muscles i had. today, i can see that the muscles most susceptible to inflammation are those muscles that get strained that would've just recovered quickly if i didn't have RA. maybe exercise does work at the initial stages of the disease. it worked for me. at that time, i only had a general feeling of unwellness, stiff joints and muscles, but over-all i didn't have seriously inflamed joints like i do now.
I’ve had RA for about three years. As strange as it sounds, I just started an exercise program for the first time ever…last year. Of course, some people might say that calling what I do exercise would be a stretch…it works for me. On days that my joints are stiff and swollen, I don’t even attempt it. But, on my good days I find that it helps my mind, body, and spirit. I have found that the elyptical machine works well for me. It is much easier on my joints than the treadmill. I do my cardio on it and then move to the weights. I am always careful to avoid the machines that aggravate any tender joints and only do low impact exercise. So, I say…to each his own. One size does not fit all of us when it comes to exercise.
“.. if RA patients would JUST exercise, they would feel better”
I think the key word here is ‘just’.
I am pro-exercise for RA patients, BUT it requires a customized RA training program. I followed the RAPIT (RA Patients In Training) program her in the Netherlands for a year and then joined a gym run by physical therapists. My exercise regime is taylor-made and reviewed regularly, but it has been far from easy. I have been at it for four years and have regularly taken a few steps back in order to move forward again. I am very fortunate with my physical therapist, she understands my RA better than my rheumy, on occasion she has sent me home to chill, when I was overdoing it.
I go to this gym twice a week and enjoy it. My body has never looked as it good as it does now (I bench press 25kg) , but I still have RA, I still suffer from fatigue, I am still in constant pain and still get flares. But I can do more than I could 4 years ago and I can, in moderation, actively play with my 4 year old son.
Don’t rule out exercise for RA completely, it’s a matter of finding the best form for you and taking it slow.
Dadwithra,
Thank you for your excellent comments.
You sound very lucky with your physical therapist. I wish everyone were so well informed about RA. People usually tell me stories that are very different from that, unfortunately.
There are probably some other distinctions which we need to make, in addition to the one you point out. I have been giving this a lot of thought & research.
The most significant distinction is the particular course or severity of RA involved. For many, even on the highest doses of dmards, RA is unrelenting. All movement causes pain & exercise is not even possible. Many others are in wheelchairs or can barely walk. They send me tearful letters of how they used to run marathons or play on sports teams. They are not lazy or malingering. I know that they are telling the truth because I am like them in some ways. There are several other posts on exercise on the blog. I hope everyone interested will read more of this discussion here.
Also, while not on exercise, this post explains my point about movement and usage of joints.
I hope that someday I will be like you. I would give so much to be able to run again. Or even iron shirts.
Hey RAwarrior,
You make a very good point, RA is different for each RA patient, whether it is the way the disease manifests itself or how our bodies respond to it.
You are right, my physical therapist is amazing and I want to share an instance with you that relates to your tennis adventures in part 2 of your post on exercising with RA.
Last year in the summer, I decided I wanted to give tennis a go, I used to love to play pre-RA. So I asked my physical therapist what I should look out for. She gave me a look, a look that said: “Dude, what are you thinking, you have RA”. Then she sighed, seeing the enthusiasm in my eyes and told me to at least wear my wrist guards and to take it slow. I lasted 10 minutes on the court, it was too much for my wrists, even with the guard. I have had to let tennis go (though I can still play it on the Wii) but I have another way to exercise that suits me and my RA best even if it is not the activity I wish I could do.
There was a 72 year old man in my RAPIT group, who had lots of trouble walking and his hands were so affected, he could not shake anyone’s hand. After six months he was moving so much better and he could do little DIY jobs around the house again. He is a changed man.
I agree with you, exercise is not for everyone, but I guess my point is, do not underestimate what you as an RA patient are capable of doing with exercise.
Have a great weekend and an awesome festive season,
Dadwithra
This is a good discussion. I’ve been working on a 4th post on this subject. Here is a relevant comment I got yesterday.
Sometimes, people tell me that they feel like there is more than one kind of RA. I don’t know if I’d put it that way, but there are definitely different courses of RA. Two days ago, I ran a couple of errands and spent a day in the car. I still can barely walk. There is no way to express with words how much I want to be able to move around. If someone does not have RA or this kind of RA, it is impossible to explain exactly how it is to be so restricted with something so invisible.
There were a lot of tears in this house when we learned I could not do the Wii either. I cannot move my shoulders much.
Another disctinction: Take the a marathoner w/RA. She has RA in her wrists. Some of us have RA in every joint. It is just not the same. She does not have more fortitude. She has less RA.
Again, I so hope that I will be like you after a few months on Orencia. However, if that happens, I hope I will continue to represent those RA’ers who cannot exercise no matter how much they want to. We are all in one big RA brotherhood here.
RA Warrior,
I am so sorry about you not being able to play the Wii, I feel your pain. I’m sorry if I overstressed my point on exercise, I do realize and have said it is not for everyone.
I love your blog and your writing and have added a link to it from mine.
If you ever want more information on RAPIT or wish to visit our fine country and see a group in action, I’d be happy to show you around.
best wishes,
DadwithRA
Dadwithra, Your points are all well taken. And you did not overstep. I am sorry if I push my points hard also. It is very hard for my point to be heard; it is not being made anywhere else that I can see. I really do hope I can exercise some day. Really. RAPIT does sound good for anyone who is able to take advantage.
Hi everyone I am new to this whole forum thing but I have been finding that I have no one to confide in when it comes to my dieses. I was diagnosed with Rheumatoid Arthritis when I was just 18. I am only 21 now and can’t live the life your typical 21 year old guy should live. I too have now experienced the weight gain and absolutely hate it! Exercise has now become a daily struggle that I can’t seem to overcome. I want so badly to purchase the p90x system, but fear the consequences. Would anyone like to share their opinion…
Thanks
Kevin,
Welcome.
It’s true many people with RA can exercise. However, it will not be the same, you are right. First, the disease has to be controlled with medicines which will reduce the inflammation and pain. If you can get to the point where exercise helps you more than hurts you, then you still will need some guidelines or help to protect your affected joints. Using them in the wrong positions contributes to deformity in the long term. You may need to see a physical therapist or trainer who understands the idea of joint protection to guide you at first.
I am sorry you are going through this. I know it must be hard.
I came today looking for something specifically about exercise. I’ve packed on quite a few pounds since I’ve been diagnosed because of medication and my inability to exercise. I still try but the recovery time is just not worth it. I was wondering, how do you control weight with RA if you can’t exercise?
Ms. B,
That is a very good point. I guess I’m one of the lucky ones whose appetite is ruined by RA fever and methotrexate nausea is like a forced diet… Just kidding around.
I will definitely get back to this question soon.
I joined our local wellness center with the intent of gently exercising to “improve” my condition. I soon learned that even gentle movement in the pool could aggravate my pain. It feels great to stretch and move when my joints will allow, but I’m certainly not able to keep up with any routine. In fact, I spend most of my time in the hot tub or steam room which both feel really good. Some days I can’t get up and down the stairs to do laundry for my family. I can’t “waste” my precious movement time on the gym. Of course I know that I would feel better if I could lose some weight, but between the pred and the physical limitation, I don’t know how to make that happen. It’s so great to be able to talk about this with others who UNDERSTAND.
I hate that we have to have this discussion. I’d really just rather play tennis or swim… :chic:
It seems like you’ve figured out what you need to do: just do the best you can for your body. If it hurts you, you can’t think it’s good to do it.
If it hurts me too much to go up stairs, then why would it be good for me to do the same movement in the gym and call it “exercise”? Does not make sense.
Here’s a question: Should we redefine the word “exercise” for RA patients?
I read in some comments that exercise is compared to the exercise we did pre-RA. Some of us used to gym or run or in my case, play tennis. Could it be the case that we are setting the bar too high? Perhaps exercising with RA requires you to take it very slow, limit it to 5 minutes a day, perhaps even every other day. We do move around every day, that could be seen as physical activity. Walking around the block is exercise. Stretching in the shower is exercise too. As is climbing the stairs in your home (however difficult). If we’re more conscious of this, it may make us feel better, focussing on what we CAN do.
After my initial reactions on this post, I spoke to several physical therapist, rheumy’s and RA-researchers on this topic. All of them believe RA-exercise benefits RA patients. But one of them pointed something out, which I found interesting. There’s a difference in attitude towards exercise in different countries, when it comes to RA. The Dutch arthritis medical community are big advocates of exercise, whereas the Canadians, I believe, are very hesitant on the issue and the US is somewhere in the middle.
They also believe that telling an RA-patient to ‘just exercise’ is an ineffective way of getting someone to exercise. In some cases it’s even counter productive. You need an RA-customised exercise program and guidance is essential.
Exercise with RA will never be the same as exercise before RA. It really has to be tailored to your abilities. But a little exercise will enable you to have a more normal life. To get out of a parking space, walk a little, play with your kids. Muscles waste away and it is harder to get them back astime goes on. But the real issue here is heart health. The inflammation in our bodies puts us at higher risk. There is not much point in saving your joints only to die of a heart attack. Balance and caution are required here, that is why all thoses experts agree it is important to exercise. I hope you haven’t discouraged too many people from trying.
Don’t compare your RA to others. You have no idea what their journey is all about. I have never been discouraged to exercise from this blog. Have only found encouragement.
It is totally amazing to me that anyone with RA – even MILD RA can honestly think THEIR answer is the only answer for everyone.
Kelly your advice has been spot on for those of us with moderate to severe RA – Exercise???? I rode a bike for 10 miles a day for 10 years and worked our EVERY morning for 1/2 hr to an hour. Now exercise is an exercise in futility. When I clean my HOUSE I start flaring the next day.
When I take a very slow very short walk with my Hubby – the next day I flare. If I take the stairs instead of the elevator even ONE TIME at work – I flare – so exercise moderate or otherwise for some of us is just not possible.
Heart issues run in my family so I DO understand that our hearts need to be taken care of but so do our joints, our bones and our muscles.
No ONE person is alike and the answer for one person may not be the answer for everyone. Kelly HAS NOT turned people off of exercise and has done so much good here. If a person CAN exercise without damage – God Bless them and that is wonderful but let me say this here and now – I was an athlete – I was a runner and now I am lucky to be able to get out of bed in the morning. If I exercised I could not function, so it may work for you and that is great but it is NOT going to work for some of us – no matter how tailored it is because it does much more harm than good.
I have never once seen Kelly say: DO NOT EXERCISE and she does NOT discourage in any form – she has ENCOURAGED people so much – in fact she pretty much saved my sanity and my life. If exercise is good for you then that’s great. But putting that last sentence in your post was totally unnecessary –
Kelly – thank you for your research, and your encouragement – I honestly kept thinking there was something wrong that I could not exercise until I found this. What you did was show me that ‘all those experts that talk talk talk” do not seem to take into consideration the RA patient that gets more harm from it than good.
How many of these so called experts HAVE RA?? I would like to know if any of them do………………..
I have such bad flares in my hips today and you know why? I attempted 2 days ago to trim ONE Hibiscus plant – ONE SMALL one – thought I felt good – all it did was make me worse……………….
Joanne: I don’t think this article is discouraging, in the least. My RA is such that, some days, I can BARELY manage a shower, and that is my “exercise”. When I’m doing really well (which hasn’t been for awhile), a walk around the block is heavenly. I used to be a serious walker but I’ve had to make adjustments in attitude and expectations since having more severe RA. My rheum does NOT want me exercising an inflammed joint, either. I don’t choose to not exercise because I’m lazy.It’s just I have to do what I CAN do, according to my RA , each and every day. We have to learn to listen to our bodies, to effectively help control the disease. Overdoing it only makes me basically bed-ridden.
Looking over the comments here. This is the first of 3 posts on exercise ( the other parts are linked in the article). I start planning the next post as soon as each is published. Part 4 will come as soon as I can get to it.
As I stated in the post, I knew that this would be a controversial topic. I welcome polite debate. However, it has become less about the specifics and more about philosophy. Sometimes, I feel like the exact words that I’ve written were not read. I don’t have time to keep re-stating what I’ve said.
How many times have I written “If you can, you should; if you can’t, you shouldn’t”? How many times on this blog have I stated that I do the most I possibly can every day? How many people (a hundred or more?) have commented on the exercise posts on Facebook or the blog or in emails, saying how painful it was for them to realize that they cannot exercise the way they want to?
All of that is ignored. All of my friends who have been or are in wheelchairs are ignored. All of the doctors & research that say, don’t exercise or stress a joint in flare are ignored. Why? The specifics are detailed in the 3 posts of why some can & some can’t do as much – Why is that ignored?
I don’t know. I just had a moment to reflect. I have to go drive my daughter to work. I’ll keep thinking about it.
Several years ago, when I first moved to this senior housing compound we had a young,dumb,know-it-all manager who refused to give me back a handicapped parking space, even though I’d had a sticker for years, and initially was given a space,(which I gave away to someone who was lamer and sicker than me..dying, actually). She said “I had RA, too. I cured it with prayer and exercise!” Sure you did, cutie! When I was flare free from the first years of Enbrel, I swam a lot–slowly, floating on my back lazily, gently backstroking and even took an arthritis water exercise class at my own pace– and it DID help my joints to be less stiff and painful. When I got worse with degenerative back disease (RA plus 5 other diagnoses) and lost my balance from non-diabetic neuropathies, I felt I had to stop. I miss it and maybe I’ll be able to go back. I’ve started since to have some minor flares and swellings, and I do wonder if it has anything to do with not swimming. Hmmmm.
Update to my own post (do any other posters do that?). A little time has gone by. I have not gone back to the swimming, even though for years, docs and PT’s had been telling me that was the ONLY exercise I should attempt. I miss it, but I have substituted walking with my seated walker, so I can sit every few steps if I need to. My choice of venue is our amazing new Walkway Across the Hudson, a new state recreational area over the Hudson River in Poughkeepsie, NY. I am just so passionate about this glorious place. I sometimes walk as far as a mile and a half (in 2 hours of alternating moving and resting) Sometimes it puts me in bed the next day, sometimes it seems to help , but it’s worth it to me, and, at my age, almost 78, I’m grabbing at all the moments of bliss I can get!
Haha. Only the good ones do (update).
Lynn, you’re an inspiration, thanks for posting. I want to be passionate about walking in a beautiful place when I’m 78. Carpe Diem people :clock:
I am personally finding the PM Tai Chi DVD used in a recent clinical trial for Fibromyalgia patients to be both soothing and somewhat liberating. The real key is not to over-do it and rather work-up quite slowly to your own personal level of comfort. RA patients indeed need to move and breathe and eat healthy non-processed fresh vegetables. Daily episodes of sunshine are nature’s best doses of Vitamin D. Thank you for your compassionate treatment of the subject of exercise with those of us with inflammatory illnesses.
Thanks, Gina. Good points.
Exercise is a thorny topic for me…How many times people have said to me …”all you need is exercise” Or “all you need is to lose weight”…and I think to myself…How am I to lose weight without exercise..or how can I exercise…with a knee that need to be replaced…swim maybe? Oh but I just had surgery on my shoulder and I can’t swim..right…Yes we should move and try to stay as active as possible but within reason…most of what you hear about online is exercise exercise exercise…Even some of the RA drug ads have these laughing happy people exercising away….amazing I think to myself…I just want to climb the stairs or go to the grocery store without hanging onto the grocery cart for dear life…I agree with you Kelly…Exercise if you can…but if you can’t you shouldn’t…Joint damage I can do without..
Thanks, Susan. Good luck with your knee – keeping you in mind.
As someone with RA, I’ve been wanting to do all I can to get in better health & exercise has been part of that…until of course, I injured myself. Thinking I was just having a flare-up & laying off the “harder” workouts I continued to try to get my body to do what was needed, but now I need physical therapy to resolve the foot issue that has come up. Ugh. Eventually I’ll get to exercise like everybody else & get on track?! This is so frustrating. It’s nice to know(not really, because I know it just sucks), but it makes me feel a little relief that others have issues too. And, I also know how lucky I am that I am not as affected by RA as others. Best wishes to all with this disease.
Kathleen, I hope your foot gets better soon. Thanks for the good wishes.
Once again you strike a note of truth and spell it out the way it is in my life.
19% body fat, I played tennis 15 hours a week, exercised in the gym 8 hours a week before my joints were fused.
First joint, of course my right wrist, that messed up my serve and the cast made my ability to go fly fishing a challenge, I still moved and played.
Second joint was a doozy, tri arthrodesis 7 screws in my right ankle. This surgery was performed twice and rendered my body into inaction.
Right elbow no longer goes straight.
Hands no longer can hold.
My feet can’t walk, my toes hurt and are hooked.
I dream of running on a treadmill again, but it is a dream.
I am now just recovering from Sphenoid disease surgery
( taking a drill and opening up the cavity behind your eyes) relieves the pressure of constant headaches, ahhhhhh!
My dream now is to get back into the gym, but I sit on a couch reading your blog and cry. You write about my life, you don’t even know me but you know me. Does that mean you know my disease and my disease is my life? I hope not, I pray not, however this disease controls my life.
Kelly I cried after reading this, you write the truth and the reality that we all live with. As always, thank you!
Janette
Dear Janette,
That was beautifully stated. If I write your life, it is because we share the struggle. But, I hope that the disease is not your whole life on very many days. RA is very powerful & it can eclipse other things at times. And we fight back.
I have spent the past 17 months living a life that means it takes me 2 hours to wake up, get out of the bed, got to the bathroom, and brush my teeth, Using many assistive devices and then just turning around and climbing back into bed because I’m exhausted. I have laid in that bed thinking surely that counts as exercise…it has too I have used all my energy and everything hurts. I do what I can when I can. I jealously read the posts of others that talk about walking their dogs around the block. My goal is to not have to sit down walking across my lliving room. I miss the pre-RA days of being active. Before I knew I had RA but now know I was having symptoms, I decided to join a gym to boost my exercise program. I got on the elipitcal machine thinking it would be easier on my achey knees. I lasted 5 minutes and was in horrible pain. Decided it was cause I pulled a muscle. After 6 weeks one of the ICU doctors I worked with forced me (during work) to go have the ER doc check me out. My hip was broken.
Sorry this was so long, but my point is, listen to your individual body. If it hurts at ALL stop!!! My only formal exercise now is my daily range of motion. I do it twice a day, once in the morning before getting out of bed (helps loosen some joints to get out of bed) and once afternoon. Rarely does any of my joints have full ROM, you do what you can.
I hear you Tanya. Thanks for saying it for others who are in that same boat. You are a warrior.
Thank you for your post. My cousin’s girlfriend noted it on FB so I was able to read it. I went from an athlete – several soccer teams (concurrently), volleyball, and other misc. activities, and had just finished a marathon (yes – whole 26.2 for the doubters who always ask me “a real marathon) to totally immobile. I was fortunate that some mobility came back and I was able to “crawl” or “wheel” myself to the bathroom but that was it for a long time. I took steroids for two years and put on 100 lbs, but was able to walk with the steroids. Now I have good and bad days and can typically be unsure of which I’ll have at any given moment. Not any given day or week, but moment. I can be walking, feeling good (for me) and almost feel like I want to exercise and within a few minutes my joints will swell up (from jaw joint to elbows to ankles) and it will feel like I am being strangled in my joints while being stabbed in them at the same time. I’m frequently told to lose weight and while I agree I should lose weight, for the first 30 years of my life (I’m 40 now), I did exercise – A LOT. And I am the type who has to exercise to keep in a safe curvy shape (I was never thin – even with all the sports). They always tell me my ankles will feel better. I agree. But my wrists and jaw are not fat and do not carry the weight. I never want anyone to feel how I feel, but I sometimes wish they could know for a day what it is like to have your ribs hurt because your organs have fluid swelling around them. To not be able to pull a zipper up on a pair of pants, or for that matter, not be able to put a sock on. Sometimes I cannot even pull a sheet on or off of me. Exercise??? I wish. I have a treadmill that is now dusty. Boxing equipment that takes up one corner of my garage. Baseball equipment in another. Athlete? Once.. but just defeat. If I do exercise (code: walk a few blocks), I am laid up for the weekend. If I want to shower, i have to wake up two hours early so I can prepare my joints to stand. Then take the shower. Then rest afterwards. Then get up. Then dry hair. Then rest. It’s a joke. And I take a variety of drugs that make me really sick just so I can function even a little. Okay… now I am rambling. Was glad to see this and was feeling a bit on my own. Thanks for sharing all of your stories.
Denise, I’m so glad for FB and your cousin’s girlfriend! That is such a good description – being strangled & stabbed by your joints at the same time!
I share your frustration too. Did you see Phyllis’ post after yours yet? The cause of your jaw pain or breastbone, just as you point out, is NOT caused by weight or lack of exercise. The joint pain is caused by the disease aggressively attacking you. Not your fault at all.
Kelly,
The only “excercise” I have been encouraged to do is some hydro therapy in a heated pool. While the heat helps to soothe, the movement does help strengthen and tone muscles for joint support.
The catch is, where are these heated pools and at what times are you offered access? Most are located at Gyms or rehab centers with operation hours of 8am – 5pm. That would be ok, if I didn’t still work. I guess, one day I will have time to swim for excecise, but until then what?
I don’t know, Amy.
ideas: Could insurance companies cover membership to the Y? If they did, would the Y consider having the pool heated to a better temp for patients or longer hours? I’m surprised your University Hospital doesn’t realize this problem and make something available.
Kelly,
Thank you for bringing this up~! I got tears in my eyes reading your words.
Years ago, before RA, I used to power walk 4 miles every morning. People saw me doing this, and stopped and commented, “you should RUN!”. My response was,’you should walk!” Most of the pokes to run came from sedentary people. Later, I did run, including running four miles on the hard packed sandy beach at Morro Bay, barefoot. I hiked in the mountains, I back-packed, I walked uphill for 2-3 miles a day. I was able to repel across a raging river in the Sierras. Then the RA hit.
My warrior heart has not stopped wanting to exercise, my body has betrayed me. So because I WANT to exercise, I do, and then I OVERDUE and feel terrible. I think you can all relate.
Now, it’s all about the pool. I cross-country ski in the pool, I run in the pool, walk in the pool and dance in the pool. But I can only do it for 30 minutes. Recently I thought, oh, I’ll push my time up to 50 minute! You know what happened. I am sad that there are summits I didn’t get to climb, mainly Mt. Whitney. If ANYONE tells me, “I should walk…exercise…whatever” I will have to rely on the fruit of the Spirit to give a civil response.
I pray for you Kelly, thanks for all you do for your fellow warriors.
I’ve been told to lose weight, it would really help. I bought that lie. I lost 40 pounds. The only thing that has changed is the size of my jeans.
Phyllis,
I loved your words too. You said this so perfectly: “My warrior heart has not stopped wanting to exercise, my body has betrayed me.” I would love to have that on a t-shirt. What do you think? Also the part about the Spirit’s help to give a civil response – :heart: WHY are people so uncivil on this matter toward us? They will not accept our answer – I feel like they think I’m lying when I say I can’t.
Your weight loss is still inspirational to me because I know you had to fight to get there. And you are right it does not do much for severe RA. I’ve been the same size since I was 13 and my RA does not care. RA attacks & kills thin people too – and they may have even less resistance to the wasting of the disease.
Hi Everyone,
I’ve had RA for 5 years+ and Fibromyalgia too, and for a long time could barely walk much less think of exercise. The pain was (and still can be) excruciating so the idea of just getting out of my apartment was beyond impossible. I was an incredibly active person before I got RA and it was devastating to suddenly become this immobile, pain-ridden person.
About 12 weeks ago, I was with my remedial therapist who was working on my painful, fibro-laden legs and she told me about a personal trainer who worked with people who have chronic fatigue. He had had some great success in rehabilitating people with that condition and so I decided to call him and talk about where I’m at, because even though i am in awful pain so much of the time, I wanted to test the theory that exercise could help. The frustration of not being able to move properly was just pissing me off (sorry about the language).
I met with Paul and told him about my situation, and he agreed to take me on for six weeks at a reduced fee so that I could try out a few things and see what happened.
We started with very simple things like stretches, which helped the fibro no-end and I started to sleep better within 2 weeks. Very, very gentle stretches, but decided to mimic myofacial release (which my remedial therapist does).
Then we moved onto short bursts of low-impact walking on a treadmill and some cycling on a bike (10 minutes at a time at low impact levels). Last week I added a swim (I really can only do breast stroke) and the weightlessness of water was wonderful.
I am still experiencing significant pain, but the exercise is helping relieve the stiffness of RA/fibro. And it’s helping me to sleep better and reduce the brain fog I often struggle with. I just have to be very conscious to not over do it when I’m feeling okay and Paul knows when I’m pushing myself and slows me down.
So no miracle weightloss or cures, but certainly I’m feeling a lot better mentally and to some degree physically. i leave Paul’s studio feeling capable, and that is a real treat for me.
I have had to muck around with my pain relief meds, and so far my flare ups have been minimal, but when those occur, Paul helps me to work around them. And he’s offered to keep giving me lower-cost training for the next few months.
I know not everyone can afford a personal trainer, and neither can I really. I now live with my mother to keep my rent costs and living costs down (which is a really hard thing to do when you’re in your 30s!), which freed up a little money to make this possible. It’s like all things when you have RA, compromise is necessary.
So I’ll keep you posted if you like about the progress, but I know for my mental well being as well as my physical well-being, this is a journey i want to continue.
Betty, I’m so glad you are finding some help from a good & gentle therapist. It sounds like he gets it. We are all different and not even the same as our own selves as time passes. Doing as much as we can all the time is the way many of us live our lives – it just varies what that is.
I agree with what you say about the good feelings you get when you can do even a little more physically.
I was cruising the internet.
I find it hard to exercise since I have arthritis in both big toes. I can hardly walk around the block and the only shoes I can wear of New Balance tennis shoes and flip flops.
If exercising would mean I would get better than that would also mean I would not have gotten ill in the first place since I was a very active person.
I have RA nodules in the balls of my feet that are extremely painful and wondered how many other RA patients have this–it makes working out nearly impossible. I am getting insoles made and am going on Enbrel soon (probably) so I’m hoping that helps.
Is there anyone out there with the same problem and do have you found solutions?
Debbie, I don’t have nodules there yet (thank God), but I have heard that from other patients. Maybe the Enbrel will help them go down – it sometimes does. Otherwise, I wonder if you might ask about having them removed (surgically) since it would make such a difference in your abilities and quality of life. Good luck.
Hi RW,
I don’t know when you write this re RA and excercise but I could’nt agree more. I love walking and was bereaved of its loss when RA struck, I still walk but not so far. I am assaulted on all sides by arthritis associations to walk here/ jog there/ swim for joints/ knees up for mobility. Actually for the reasons you state this enrages me. A particular culprit is Arthritis Ireland!!! They recently had an advertising campagne for dancing with arthritis – I wish!!!
Anyway, just thought I’d say hear hear!
i think I’m confused – my shoulders/arms kill me and doctor told me to go exercise with light weight – what about protecting my joints since they hurt so bad?
Jean, are your shoulder joints inflammed by RA “flare”? If so, then I’d get approval from a doc before trying to exercise them much. Most say gentle range of motion stretching a couple times a day is safe.
I hope your shoulders feel better soon.
I do know that RA can be genetic, my mother has it. But one thing I read over and over is how active and even over active most folks were before they were hit with RA. I was a very physical person as well. I wonder if there is any connection to that. If we are more prone to developing RA because we are very physically active. Which really makes it sad, such a huge adjustment to make after it hits. And the fact that we were used to being sore at times so took us longer to say Uncle. Exercise…sure if I want to be in misery and get up in the middle of the night to take a pain pill. And that was just from pulling weeds for about 10 minutes yesterday. Dumb me…
A great article…I completely agree with it!!
I am new to your site, but I will be signing up for it.
Thanks so much for you efforts,
Anita
This is a very intense conversation. Very interesting as well. I am a pediatric physical therapist. My specialty area is cerebral palsy, so I have do not have experience working with patients with RA. Actually, I’m surprised I’ve never had a kiddo with JRA. Regardless, exercise has always been a big part of my life (I taught aerobics while I was going to PT school). It’s hard to think I may not be able to exercise int he future. I understand joint protection, and feel that my joints will tell me what I can and cannot do. I always have some soreness somewhere, so it is impossible for me not to work my joints when I am sore. Even my work is very physically challenging (obviously). I think the theme here is, if you feel good enough to exercise, by all means do it, but if you’re in pain (major red flag), then rest. Sometimes, we all need a little “push” to get going, but there’s a difference between pushing yourself through some fatigue and stiffness, and exercising when you can barely move. My goal, is to learn as much about Ra and exercise as I can. I’m hoping to stay active (like we all do).
Hi Debby,
What an insightful comment. I hope that you can continue your work and personal exercise for a long time!
There is a 4th post planned on this topic that I hope you find intersting. I get mail from folks who were used to doing heavy lifting who can’t hold a coffee cup or milk bottle – and others who can still run or bike at least sometimes. My impression is that the people I’ve heard from are very resiliant and tough, doing the most they can each day. The disease attacks the tendons quite suddenly in some people which I’m starting to believe may be the cause of some sudden disability in folks who’d obviously prefer to be able to move. It’s a tough disease for everyone, but affects folks differently.
As newly diagnosed with RA, I was wondering about exercise. Reading comments here I am learning that it is a very personal choice and something to be taken day by day (as with RA itself). Has anyone done Tai Chi or relaxation yoga? I guess it will be up to me to see if I can do it or not.
The exercise debate is definitely an interesting one. Joint protection is very important, as is resting during a major flare.
I am a retired physical therapist and have treated folks with RA over the years. Yes, I encouraged gentle range of motion exercises and mild endurance exercises as well as teaching joint protection and the use of heat, ice, massage, and rest.
I always suspected that I might have RA and finally, in 2004, was officially diagnosed. I have taken Methotrexate and anti inflammatory drugs in various doses over the years. Something always hurts no matter what I take, unless it is steroids which provide a breath of fresh air but not without a price (side affects that is).
In 2008, I was shocked with the diagnosis of lung adenocarcinoma and am stage IV NED.
For me, personally, exercise has always been a part of my life. With the above diagnoses, about the only thing that keeps my emotional roller coaster from going out of control is to keep up an exercise regime. It makes me feel like I’m OK…if I can do this, I’m OK. My main form of exercise is hiking or spinning class. There are nights that I hurt terribly, but that can also happen after I chop onions for dinner! I usually feel better in the morning. Some days I feel better after my walks. Some days I sit in the rocker and stare into space. I do listen to my body and plan my activities accordingly.
My only reason to comment on the subject is to support the idea that reasonable exercise can work for some people as stated before. For me it provides a huge boost to my mental health. But if it doesn’t work for you, then acknowledging this is not to say you are lazy, whimpy, etc! It is all about finding a balance that works for you.
RA is a tough disease. Very few people understand what RA involves. Thanks, Kelly, for giving RA a voice and for all you have done for us! YOUR SCHEDULE makes MY JOINTS HURT!
Exercise was always a big part of my life too until the day RA went full blown so I know how wonderful it must make you feel.
Yes I agree, “finding a balance that works for you” is the answer and individual differences and disease pattern is the key. Maybe you are more aware of this because of your career. This is where many seem to miss it. Disease pattern is the reason that many can no longer chop onions or hike or bike – no matter how much they want to – and yet others can tolerate traditional exercise and enjoy the tradtional benefits of it. For some reason, many tend to assume that their particular disease pattern applies to others. If they only have certain joints affected, they assume others can’t have every joint affected or if they have flares with breaks in between, they assume everyone has flares…
I totally agree whole heartedly with every thing you have said. The Arthritis society in my country is called Arthritis Ireland, and mostly what they seem to do is organise walks and runs for arthritis sufferers, I can’t believe it.
Exercise is all very well, but what if you have two eaten ankles? It is offensive. I love exercise and miss my old life, like you, we have active RA for about the same length of time.
Anyway, just wanted to say that, wish I could share this with IA.
Thanks for sharing. We do have several regular readers in Ireland. I don’t know if IA has read this site, but I’ve connected with them through Twitter. I don’t know if it’s focused on arthritis or if RA is a big concern for them. I’d hope that if they want to be part of representing RA in that country then they would listen to the needs of patients. We have formed the Rheumatoid Patient Foundation here so we could have an organization which speaks for us and gets the message right. http://rheum4us.org
I recently have had a diagnosis of high cholesterol, so I’ve adjusted my diet. My primary also wants me to exercise. (You can walk at least.) Yes, I can, most days pretty well. However, I break through my medication so quickly, and there’s so many other things I want to do.
I want to cook a meal for my family.
I want to play with my children instead of sleep on the couch all day.
I want to work my job that I just started in January. By the end of my day, all I can do is pretty much sleep.
If you can, do it. If you can’t, don’t. I wish other people understood this more. My body says no. It’s not for not wanting to. It’s because I CAN’T.