How I Keep On Moving While Living With Rheumatoid Arthritis

RA Guy Adventures of RA Guy 18 Comments

movementEarlier this week, I met my former yoga instructor (now friend) for coffee. She asked me if I was still practicing yoga, and I said yes–but that I was doing it on my own, not in a group, and that I was not following any formal routines or strict series of poses. Instead, I now pay attention to what my body needs at any given moment, and use that as the basis for my ‘spontaneous’ workouts. If my body can do something, I do it. If my body can’t do something, I don’t do it (because I know that attempting to do so will only bring physical harm). I have fun with what I do, and I love the fact that every one of my ‘workouts’ is unique.

What I was describing, she told me, was the true essence of yoga–and she was very happy that I not only found it for myself, but that I continue to use it to improve my life and to keep on moving, despite the ever-present pain and disability.

When I talk about the fact that I now exercise on a regular basis, through alternate days of walking and yoga, I often receive angry messages from readers. These people tell me that it is not possible for someone with severe RA to exercise the way I do, hence I must either have non-severe RA (whatever that means, I don’t know) or that I must not have RA at all. Some go even further, and accuse me of being irresponsible for communicating my message that yes I am a person who lives with rheumatoid arthritis, and that yes I still continue to exercise!

But maybe this last piece is the part they understand the least. You see, I really don’t see what I’m doing as exercise. I see it as moving. And I see it as continuing to do everything within my control to keep on moving–because I know exactly what it feels like to not be able to move.

Case in point: I have been living with severe muscle contractures in my back for the past few years. This means that my back muscles are in a constant state of tension, i.e. they are both losing their elasticity and starting to shorten. Last year both my rheumatologist and my physical therapist told me that there was no pill or injection that could counteract what was going on in my back, and that the only way for me to be able to keep on moving was to, well, figure out a way to keep on moving. More specifically, I had to start doing range of motion and strengthening exercises for my back.

And yes, the thought of moving something that hurt so much seemed–at the time–completely illogical. My back screams out in excruciating pain when I move it, and you’re telling me that the only answer is to move it more? I have since found out for myself that yes, moving it more is indeed the right answer. (And this, from someone who had to undergo months of physical therapy treatments where electrical currents were used to perform the initial stretching of my back muscles–to call these sessions torture is not an understatement–so that I could then try to maintain such flexibility on my own.)

After months and years of working on this one specific part of my body, I have reached a point where I am now able to move my back with much more ease…but the trick is, I have to continue to do my range of motion and strengthening exercises…all…the…time…so much so that if I go more than 48 hours without working on my back, it starts to seize up. (Hence, my alternating days of yoga practice that I mention above.)

What about my walking? I’ve made no secret of the fact that over the past half year, I’ve started walking long distances on a very regular basis. Again, some people take this as a sign that I don’t have RA, or that I am in remission (both statements are untrue). I still continue to have significant pain in my toes, ankles, knees, and hips–this remains unchanged. But I have also considerably strengthened my legs, and this counts for a lot. Most importantly, it allows me to not have to use my cane and crutches as frequently as I once did, which in turn greatly reduces the load that my continually-weakening hands have to bear. (The eternal Catch 22 of RA: you need crutches in order to walk, but you need strength in your hands/arms in order to be able to use crutches.)

Twice already I have come back from the verge of being almost completely crippled, to regaining my mobility. This doesn’t mean that my pain has gone away, or that it doesn’t hurt to move. It only means that I know where my body is on a day-to-day basis, and I also know that if I don’t continue moving each and every day–as much as I possibly can–that this disease will very quickly get the best of me.

For me, it has nothing to do with exercise, and everything to do with movement (if that makes any sense). So much so, that I regard both my walking and my yoga as moving meditations. I light a candle and some incense if I am indoors, or listen to some relaxing music if I am outdoors. Most importantly, I focus on each and every breath, and on each and every movement. I prove to myself that even though my brain is continually sending me signals to not move (it’s own built-in reaction to receiving continual pain signals), that I am indeed finding a way to still do so.

So is it possible for a person like me to move the way I do? Absolutely. It’s not easy, but with determination and the right mindset, it is possible…and as with everything else in life, what is right for my body is different from what is right for other’s bodies.

Every step I take, and every yoga posture I hold, serve to remind me that I, and not my RA, am in control of my body.

I wouldn’t have it any other way.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 18

  1. Post
    RA Guy

    I also forgot to mention, I think it rocks to experience the muscle soreness that follows certain types of activity, if only because it’s a pain that is very different from my RA pain…and when I am able to break up this often overwhelming and oppressive pain into different and smaller pieces, it usually seems much easier to cope with.

  2. Susan Chaplin

    Well, you know, for those of us facing imminent joint replacement (knee and hip) due to the erosive power of our RA, the idea of gallivanting on 10K hikes, climbing 8,000 ft mountains or standing unassisted on our weakened hands and wrists, does seem far–fetched. I for one don’t doubt your RA-ness, or question your superhero abilities. I sometimes ask myself, heck, did this Guy get miraculously cured at Lourdes…or something. BUT your latest posts on keeping moving and positive make sense. We’re trying Mr. RA Guy. Forgive us if we get jealous and/or suffer occasional bouts of rage and disbelief toward you. We’ll get over it. Keep being you and keep posting!

  3. Krystal

    I have had severe RA for over 30 years, been in the wheelchair for 38 was told I would never walk again, at 18 they told me that ,even in bed I would move the leg muscles I knew would move when I walked again so though I was laying in bed in my mind I was walking and physically I would use those muscles in my legs while laying there,after years I found a Dr who had an expermential surgery he had just done in Russia but never on someone with my RA issues, so we did it two years later, halos,stretching bones, losing three toes ,two artifical hips, two artifical knees, ankle fusions, wrist fusions, and lots of pt, I walked!!!! my two daughters saw their mom stand up and walk, something they had never seen.. of course an infection thats always been a part of me hit the left leg ,we fought it for 2 years until we had no choice but to amputate the lower leg, ok, back to pt lol, new kind of walking but I did it before, I will again, I did.but then the shoulder went had to do a hemi on the left shoulder, right was replaced totally years ago, that was Dec of 2012 , so even when I was having to stay in bed Id use my mind to use those muscles like they will when Im up again,,, every little painful move reminded me to say you go look at you, every little muscle movement over aan over helps its a fine line to much we are gonna pay to little we will pay, now I have the prosetic leg, the shoulder healed as good as its gonna, sure some days my RA flares my leg wont fit, so Im slower, but when you do the little moves again and again, your just sitting there anyway you get strong enough to stand a minute or two then walk a step or two then walk to the bathroom on your own!!!!,peggy capa has a yoga cd you can use made just for us arthritis warriors having a hard day, my leg wont go on,lol I use the do it from your chair session, feeling better next week use the standing use the chair, kicking but do it on your own, without overdoing, flexibility is improved, you start a beautiful cycle, physical,mental,emotional,spiritual, all cycles each other,, use what you can even if its only a toe, you’ll get stronger email me Ive had over 30 surgeries numerous replacments, etc…etc…I type with 1 index finger on the right hand 1 ring finger on the left the rest are crippled under and cant be used right now, but necks acting up RA in top 1 and 2 c discs and osteo in back ,Ill figure that out and we will get to the hands, but in my mind there working lol..Sure Im not always YEA!!!!! Im strong I can do it, I cry I get frustrated, I sit on the pity potty, then I think ok you can give up, stay in bed,hurt noone would say anything or I can get up ouch,get in chair ouch, feed the cat ouch, go rest but hey look what you did and you will do it more it gets easier with time, sure you’ll have setbacks, last august, my kitty startled jumped out of my chair landed on my right leg, her claw got caught, tore open my thin skin from years of prednisone and age, and the surgeries, ended up with eer trip ambulance ride, since leg wouldnt go on cause of flare up, 11 stitches and a most beautful scar to add to the collection ,also that infection attacked like crazy so had to stay in bed with foot up, for a month, but in my mind I was walking to the bathroom on my own, moving the muscles I could, Im walking some but we are cautious of neck ra discs can slip and pinch spinal cord paralyze you, pass on that so take 20 minute spurts, hopefully we will be able to start the meds that my Dr feels would help stop progression in neck and help with flares and pain ,we havent been able to all these years since that infection cant be found or gotten rid of, so move what you can, and know its all gonna be good your kickas- ra guy I love your writing, you understand me. lord help you..
    hugs from New Mexico

  4. Carla

    As my last physical therapist so cleverly stated, “Motion is lotion to RA sufferers.” Meaning, of course, that moving helps us move and lessens the stiffness. And to Susan, facing hip and knee replacement, I’ve had both. And while I couldn’t exercise much before the replacements, exercise, especially walking or pool exercises, are well within reality AFTER the replacements. In fact, the more you exercise after the surgery, the more successful it will be. (Just remember to stay within the bounds of what you SHOULD be doing during each stage of recovery.) I feel very sorry for anyone who either can’t or thinks they can’t exercise. That closes the world in on you very quickly. I have severe RA and I’m very thankful that I can still “get up and go”.

  5. Cheryl

    I totally understand what you’re saying!! I begin doing stretches and range of motion exercises before I’m even fully awake; because my body has become so accustomed to my morning wake-up routine. My feet gingerly touch the floor to guage what type of stability I’ll have so I can adjust. Yes, I have severe RA and Lupus. Can’t tell which is causing the aches and pains, but the RA has been around the longest so I blame that most of the time. I move, alot! Is it exercise? Yep! Is it recognized by the fitness clubs, trainers, and experts? Prob’ly not. Like you, everything I do is adapted to me and what’s going on with my body that day. There’s no need to complain or make excuses. I try to keep a positive attitude and do what I can, as often as needed, when I can. The days I can’t, I find another form of “exercise” to work out the aches, kinks, stiffness,etc! I’m in control of my life! What I do with it must meet MY standards and MY abilities!! (sorry so long; too many times I’ve heard people say “they can’t” because of RA, Lupus, Fibro…I see it as giving up on yourself. That I’ll never do!!!!)

  6. Chenoa

    Thanks for your blog and shining a light on yoga and its benefits:-) can’t wait to get back to it! Very inspirational words.

  7. Jayme

    This is one of the most empowering posts that I have seen from you. It is absolutely true that although it doesn’t seem logical that when we hurt we should move more and indeed our first reaction is not to move at all, but if we do move, it hurts less. I appreciate you sharing this information and sharing your journey with us. Namaste.

  8. Trudi

    Excellent post, which was shared in a group I am in. Movement creates blood flow & oxygen flow to areas of deprivation, which is often why pain is there too on top of the inflammation. This book, The Great Pain Deception by Steve Ozanovich although not based on RA, answered so many questions around pain, movement & the way our mind is involved in this. Being in constant pain makes you feel very angry. I was told I had aggressive RA & no drugs would manage it. I have no degeneration, only took prednisone & healed through diet & emotional work. I have recently had new symsptoms caused through healthy probiotic sauerkraut, which has caused an over growth of intestinal bacteria, meaning my previous 90% raw diet is no longer working. I am now eating 99% cooked foods & slow cooked cook broths. This has totally turned everything I believed about eating for improved health on it’s head which shows that when we are open to doing something which is far removed from our previous beliefs, it can actually make a big difference to our health. Within days the inflammation was down significantly & I am currently awaiting functional medicine tests to discover the root of the problem, which allopathic medicine cannot offer. I believe if you weren’t born with disease, then you can change the outcome. Something inside you changed your physiology to create disease, it might take a long time to figure it out but when you start looking for answers with an open mind, they will come, & that includes moving those joints!

  9. Erin

    Thanks for sharing! I have Adult Onset Stills Disease, and I have been struggling with new hip pain — probably the only pain I had not yet experienced. This is a great reminder to me that I need to keep working hard to exercise within my limits. Thanks for the inspiration!

  10. Lene

    You’re proof that what they tell us is right: that moving and strengthening your muscles can help support joints and therefore increasing our ability.

    I think that at a certain point, you realize that you can sit still or you can get on with your life. That’s usually the point where you start doing things anyway and often find yourself actually feeling better for it. Sometimes physically, often mentally.

    Remind me to talk to you about your back exercises – how you described the way you back feels sounded very familiar.

  11. Barbara

    I just started looking for some “support group” and this is the most uplifting info I’ve read. Looking forward to reading more. MY hands are my worst challenge, typing for example was one of my expertise areas, now it is much slower but I’m grateful for this keyboard. Thanks for your encouraging report and I know we will all do our best with what we have and Thank God.

  12. Kate@CookingwithArthur

    Walking and stretching are vital to me too – if I have a day where I’m stuck inside sitting I get incredibly stiff and swollen joints. It seems counter-intuitive to people that moving sore joints can help but it really does make a difference – after my hip op, they had me doing stairs on crutches only 4 hours after I regained consciousness on the grounds that moving makes everything heal better and reduces complications. Yes, not everyone can walk or stretch all the time with arthritis but that’s not a good reason to begrudge you your exercise. Everyone suffers differently and I love hearing about your experiences(and a big yes to the catch 22 of crutches vs. arms)

  13. Teresa

    I’ve been told by many different medical and fitness experts that exercise strengthens the muscles around our joints and helps give them support. As someone who has followed you since before your lifestyle change it seems quite clear to me that you worked yourself up to the point where you can do amazing things for a person with our disease. I’m not sure why that’s such a tough concept for people, the human spirit is amazing and you’re living proof of that.

  14. Tess

    Hi! I am totally with you regarding movement with RA. I have horses and they are my passion and hopefully nothing will stop me riding and caring for them. I say ‘hopefully’ because I never know what’s around the corner, and if the RA suddenly flares then yes, I have to take a step back, but will always try to carry on, as these horses won’t take care of themselves. This alone is my main ‘cure’ along with all the drugs, for all the ailments we have to endure from this capricious disease. I am also a pianist (and piano teacher) and unfortunately have experienced some damage to my right hand, however, again I find playing for a while actually loosens up the stiffness I have In this hand, although my playing isn’t the standard it used to be because of this, it won’t ever stop me playing at all, I will find a way around it..Keep up the good work! Great website. Tess

  15. Gina

    Amen…..I have lived with RA since I was 14. I am now 46. I do the same thing!… Yoga/walk…..move and listen to my body everyday!!

  16. Grace

    I have RA & Lupus, and I’m 38. I do yoga 3 times a week, or whenever I feel up for it. I try to walk around the neighborhood here and there. I was bedridden and had to use a walker or cane to move around before, but after yoga, i haven’t had to use my cane again yet… and it’s been 3 months 🙂

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