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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 / hospitals like Cleveland Clinic, Mayo, and Johns Hopkins. Soon, I learned to expand to other reputable websites like WebMd and About.com. I just wanted the legitimate information, not fairy-world cures.
I read about protecting my joints by not doing things that caused 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 about 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. I am sorry to be blunt, but if sloth did not cause my RA, then workouts will not cure it.
My doctors have prescribed vitamins, chemo shots, newfangled funky Biologic drugs, rest, anti-inflammatory medicines and even a high Omega-3 diet to attempt to gain control of my RA. 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.
There are others who have RA, but who are not disabled. Many have times between flares, however brief, when they can safely exercise. And a few other RA-ers actually have only a small number of joints that are affected. Of course, they can exercise using the unaffected joints.
I do not feel comfortable asserting this position. But, frankly, I am never comfortable anymore. I am in pain. It’s not endearing or attractive 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 RA-ers 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.
20 comments:
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.
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? :D
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 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 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
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.
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