The truth about living with Rheumatoid Arthritis


A little fable about my trip to gym this morning

I was feeling OK this morning so I went to gym.  My favourite class.  It’s a 30 minute group session that focuses on core strength, most imaginatively named ‘Core’.

I walked in slowly and set up slowly.  I can only carry one piece of equipment at a time, so a very nice lady who I didn’t know, helped me and then she set herself up behind me.  We had a brief chat and the class started.

I did all the easy options, and didn’t do some of the exercises at all.  The class uses weight plates in some sections, but I didn’t.  Just moving my body without weights is enough for me, and all I can manage right now.  I don’t lift my arms above shoulder height to preserve my shoulder joint function and to minimise the strain on my torn rotator cuff tendons.   I don’t squat or lunge deeply, too much strain on my knees.  I can’t hold a plank from my toes anymore, too hard on my shoulders and lumbar spine, so I drop to my knees.  I also tend to do elbow planks, also less pressure on my shoulders.

You might read all that and be thinking ‘hardly worth doing at all’ but it is worth doing, to me.  Even a little bit of exercise goes a very long way towards keeping me stronger, and mobile for longer, and helps stave off depression.

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Rheumatoid Arthritis, Prednisone and Exercise

Today is the first day that I feel a bit OK in a while.  Pain mostly controlled by oxycodone, prednisone sitting at 20mg but I need to take it lower, because my blood pressure and heart rate are both too high.

So I went to gym.  I drove 15 minutes to walk for ten minutes on a treadmill and do some stretches,  and then I drove 15 minutes home again.  Now I am recovering at home with a big bottle of water to rehydrate.


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Rheumatoid Arthritis and going back to yoga/pilates exercises

I went to my yoga/pilates based class for the first time in many months.  I just stopped going. Why? Because I was sick of it. Sick of the pain that I had to go through during each class, sick of giving up my Sunday morning, and just sick of doing a class I didn’t enjoy anymore because ‘I should’ or ‘it’s good for me’.

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Exercise and RA #RAblog

RABlogbadgeI have always been an exerciser. Gym junkie.  Runner.  Karate-geek.  There has always been exercise in my life.  When I was younger it was all about trying to tame my large build and change my body into something more socially acceptable. Something it couldn’t be.  It wasn’t healthy.  It was obsessive.

Somewhere in my twenties it became more about health, and feeling good, although body image still loomed large.

In my thirties I was 20 kilograms overweight because of Hashimoto’s thyroiditis and PCOS but I was fitter than I’d ever been. I ran 5km most days, because I enjoyed it and I enjoyed being cardio fit.  I lifted weights because I wanted to be strong.  I liked that I could lift my young kids with no problems.  I liked that I could keep up with them and play soccer with them.  And I’d made peace with the fact that I can’t change my large build and excess body fat.  I just enjoyed exercise for the way it made me feel.  It staved off the bouts of depression that came with hypothyroidism and the hormonal imbalances that polycystic ovarian syndrome caused.  Exercise kept me strong. It made me feel good.

I did have these recurring episodes of pain though.  Strange injuries.  Weird, because I’d often injure both knees at once.  Or both ankles at once. Or both wrists.  I could never remember how, but figured it happened while running. Or lifting.  It always went away though, so I just took some anti-inflammatories and didn’t worry about it.  When I did ask my doctor, she just said it was because of my hypothyroidism.

Then one day the joint pain was so bad I couldn’t walk. I couldn’t move.  I couldn’t comprehend it at all. I couldn’t get up.  I crawled.

Something was wrong.  Very wrong.

I didn’t get back up for about five months. Until a doctor finally gave me prednisone.

To cut a very long story short, it was, of course, Rheumatoid Arthritis.  Not injuries.

For two years I thought I would never exercise again.  I couldn’t. It hurt too much.  None of the medications helped me much. And I was always in pain, right from the beginning.  Some days were milder. Some days were unbearable.

Then one day some guy knocked on our door and asked us if we were interested in Karate.  I said ‘no’ right away. But my husband really wanted to try it. He’d always wanted to do a martial art.  He’d done Tae Kwon Do when he was a teenager, and loved it back then. He had always wanted to get back into it.

Our marriage had become rocky since I became ill, so I thought maybe it would give us something to do together again.

Martial arts are also highly recommended for kids with an Autism Spectrum Disorder (ASD).

I signed the whole family up.

And I hated it.

For the first two months, I went twice a week to these classes. I felt like I’d joined some weird cult.  The Japanese, the bowing, the ritual.   So. Not. Me.

But I was exercising again.  The moves were simple – it was a family based, non-contact style.  And I was doing it for my family.  It was self-paced to a degree, and low impact exercise. And then I slowly realised that, once I got moving, my joint pain improved.  The truth was, that fifteen minutes into a class I was as close to pain free as I ever got.

The synovial fluid that lines the joints becomes thickened and inflamed in Rheumatoid Arthritis.  Exercise causes the synovial fluid to become more viscous, which lubricates the joint and reduces inflammation and pain.

In short, exercise is good for joints. Exercise reduces pain, no matter how counter-intuitive that sounds, as long as you do the right kind of exercise.  And you have to persevere through the inevitable muscle soreness when you begin.

And then somewhere along the line I started to love karate.  I met people, got involved in the social life, and it did give my husband and I something in common again.  For a while.

It also encouraged me to get back into other forms of exercise. I set up the home gym again. Started doing weights again. And I even started running again, although I wasn’t able to run often. Only when did prednisone bursts.  I got some of ‘me’ back.

As my disease progressed, and I progressed through the karate belts, the standard expected of me was higher, and I could no longer perform at a level I was happy with.  Gammy joints and pain meant I couldn’t execute the moves the way they should be executed.  I couldn’t earn the belts honestly.  Yes, they would have allowed me to progress, taking my medical issues into account, but that wasn’t the way I wanted to earn my belts.  So my karate journey ended, but on my terms.  I left with a brown belt and a lot of good memories.

I joined a gym and started doing yoga based classes.  I learned that you can exercise and work up a sweat by standing still. No joint movement required.  I built muscle and flexibility and strengthened my tendons, ligaments and joints.

It hurt.  It always hurts.  But it was doing my body good.  Exercise is short term pain for long term gain.  This is true for everyone, but even more so for people with inflammatory arthritis.

As I got stronger, I started doing classes with light weights as well, and spin classes.  Zero impact cardiovascular training.

One of the biggest risks people with RA face is heart disease.  Cardiovascular training reduces that risk markedly.

There are days when I can’t exercise at all. There are days when I am too sick from the medication side effects to exercise.  I quickly notice that when I can’t exercise, my mood drops.  Depression is another comorbidity of rheumatoid arthritis that exercise can improve.

I have made friends at the gym.  Some truly great people.  Some weeks the only social contact I have is making small talk for a few minutes at gym.  I fight just as hard to keep those moments, as I do for the physical aspects.

I know I’m lucky. I have always enjoyed exercise.  If you hated exercise when you were well, it’s only going to be harder with RA.  But appropriate exercise is the single most important thing you can do for your health, aside from taking your medications as directed.

If you’re going to start, start slow.  Talk to your doctors.  If you’re not experienced, find a good trainer or exercise physiologist to help you get started.  Understand that it will hurt more before it hurts less. Understand that it will take time to feel the full benefits.

We all accept that DMARDs take time to work.  Exercise is the same.  We accept that DMARDs will cause side effects.  So will exercise – your muscles will hurt more to begin with.  And hey, you’re in pain already, who needs more?  But its temporary pain.  That ultimately will do your health the world of good.

It’s just about finding a form of exercise that you can enjoy.  There’s a whole lot of options.  And who knows, you might find something that you love too.

Rheumatoid Arthritis and the paradox of exercise

Young beautiful woman in the gymExercise hurts.

Exercise hurts normal people.  Exercise hurts people with inflammatory arthritis even more.

But exercise helps.  It really does.

But first it hurts.

Over the last few months I have been able to exercise less and less.  And depression has reared its ugly head…partly as a side effect of medication, partly as a side effect of rheumatoid arthritis and mixed connective tissue disease and partly as a side effect of life!

Depression is most certainly worse when I can’t exercise.  The irony being that it’s so much harder to motivate yourself when you are depressed.  Especially when you are also dealing with constant physical pain.  Each feeds on the other…it’s a vicious circle.

So I started doing less and less time in the gym.  And when I did get there, I did shorter workouts. Easier workouts.   Mostly because it hurts so damn much!  Not like normal people hurt in the gym…much, much more.

But it also ‘hurts’ that I can do less than I used to.  Lift less weight.  Perform fewer exercises. Make adaptations.   Always having to leave a class half way through really has a way of getting you down.

My instructors are wonderful. They know me, and they understand.  They are supportive in every way.

But I wasn’t supportive of myself.  I wasn’t accepting of my body’s limits.  I let it get me down.

So I decided to take a break and see what would happen.

As you would expect, I got worse.

And I lost my only real social outlet.  I lost touch with my gym buddies.

And the depression got worse.

Solution?  Get back to the gym.  In any capacity that I can.  And be satisfied.  No comparing myself to other people.  No comparing myself to what I was doing this time last year.  Just take every day at a time.  And be proud of whatever I achieve.

Sounds easy, right?

It’s not.

It’s extremely hard.  Not only does it get me down emotionally, it hurts physically and it’s much easier to just give up and tell myself I can’t exercise anymore.  It’s so tempting to ignore all the benefits of exercise (cardiovascular health, keep joints mobile, mood elevator) and just give in.

And then my little girl asked me to get fit with her.  She’s 11, and she wanted to go walking and running, because they have been learning about the importance of fitness at school.

I wanted to tell her I couldn’t do that anymore.  But the words wouldn’t come.  I remembered my own words…”there is always something you can do, on all but the very worst days”

So I dosed up on my ms contin and oxycodone and we started with a 500 metre jog.  I’m not sure it was really a jog. It was more a shuffle. I’m not honestly sure if both feet were ever off the ground at the same time.  And it was all downhill.

The second day we did 1km.  Still all downhill.

The third day we did 1100metres.

And then I had one of those knockdown flare days where I could do nothing but lie down.

But two days later, we did another 1100meters.  And we stopped at the playground on the way back.  And we played.

And you know what?  It hurt! It really hurt a lot!  Trying to jog, however slowly on these joints is not fun.  But afterwards?

I felt better.

My mobility is improving again.

My mood is improving again.

Years ago I used to do 5km as a ‘short run’, but that no longer matters.  I did 1100 metres!  With my little girl and my son in tow.  (Actually they were ahead of me…LOL). We did it together, and I’m so proud of them.  And I could see they were proud of me too.  We have something we can do together, whenever I can.  They feel like they are helping me, and I feel like I am helping them.  And that is what matters the most.

The most important gift that mixed connective tissue disease has given me is time with my children.  I was a career woman before.  I miss my career very much, but my kids and I are close.  Some people would kill for the opportunity to spend that much time with their kids.  I have been given this time, and although it has come at a very high price, I am still grateful for it.

And I am back on track. Yesterday I went back to the gym, and did a 30 minute spin class.  I bought myself a heart rate monitor, so I can keep track of my exertion levels.  I am not as strong as I used to be. I can feel my muscles fatiguing very quickly.  And I can’t get my heart rate up very high…I just don’t have the strength or the power, nor the stamina.  My muscles actually feel like they are ‘melting down’ sometimes.  I don’t know if this is a new symptom or a side effect of Arava.  I seem to remember it caused muscle weakness last time I took it.  But I can work up a sweat and put in a decent workout.  And I’m not competing anymore.  Not even with myself.

Each day is a new day.  Each day I have different capabilities.  Today I think all I will be capable of is a few stretches.  And that is enough.  I’m being grateful for what I can do.  And every little bit helps.

And the depression is receding.