You are only as old as you feel … right?!?

It was only a few short weeks ago now that I was sitting in my specialist’s office, listening intently as he read out all of the bony changes he saw in my pelvic and spinal x-rays. 

I was trying to focus my vision on the images and follow him along but I was too preoccupied by the big ol’ lump in my throat and the tears that desperately wanted to escape my eyes. 

“You have damage so bad in your sacroiliac joint that you may not have enough mobility left in your pelvis to deliver a baby normally” …… that was it… that was the sentence that got me… I swear I heard my very own heart shatter in my chest.

I once more swallowed and rapidly blinked my eyes in an attempt to mop up the beginnings of a second breakdown for the year (see previous post about SPS diagnosis – I’m a bloody mess this year apparently haha), and continued to concentrate on what this was all meaning. 

“Tenae, it is all very convincing and I am classifying your diagnosis as an inflammatory arthritis”. 

So, shall we start from the beginning … 

I was about 13 years old and vividly remember lying on the cold tiles of my bathroom floor – both knees bent up because I couldn’t stand the extra pain that came with lying flat.

I wasn’t ‘crying’, I was utterly howling and gasping for air in between screams for help.  

I had never experienced anything like this before and the coating of tears was so thick that everything was blurry. I felt like I couldn’t catch my breath, and my hyperventilation (fast breathing) had led to the most uncomfortable paraesthesia (pins and needles) and cramping in my hands.

A lovely paramedic handed me this magical green whistle.

I was so high from this glorious hand-held pain relief device that I almost didn’t notice him having to discreetly fix my pyjama tank top! (…you know, the type of singlet that is perfectly fine when you go to bed, but when you wake up your breasts, that only really resemble large mosquito bites at that age, seem to have invaded the open arm holes as the entire thing has twisted and swivelled around your body …mortified!!!)

This was the first time I was transferred by ambulance to the hospital because of the severity of my back pain.

 Little did I know there would be 5 more trips like this coming my way!

This all began with a primary school incident, in which I was literally the butt of the joke.

Picture this…. you are in year 7, the age where boys are still mean to the girls they like…. you are standing in front of a computer desk and just as you are slowly lowering yourself into the chair… some kid thinks it is hilarious to pull it away from you!

BANG…. you fall on the ground and slam your coccyx (tailbone) onto the hard flooring!

Initially the throbbing agony was unbearable!

The constant deep achy pain was right at the bottom of my spine and almost felt as though it was in-between my butt cheeks.

I couldn’t walk properly or even sit down for months and the pain was so bad that I often cried myself to sleep.

Then came the nerve pain.

I could be doing absolutely anything – walking/standing/nothing at all – when completely out of nowhere I would experience this excruciating shooting pain that ran across my lower back and down the back of my left thigh.

It was this piercing, intolerable pain that often bought a thunder of tears and left me gasping for air.

If I were weight bearing at the time I would collapse in a heap on the floor – cue bathroom floor saga with singlet mishap!

When the number of bad pain days outweighed the good I eventually got all types of scans (multiple x-rays, MRI and CT scans) – alas, I had a fracture in my coccyx and a bulging disc!!

My doctors assured me that, yes, my healing would be slow, but things would eventually repair and I would recover.

3 years had passed.

I had accepted the fact that I simply ‘had a bad back’ and this chronic background pain with episodes of acute flairs was just my new normal.

At this point I should probably mention that high school was pretty rough for me – not only was I constantly in pain, but I was miserable and horrifically bullied.

Now, I’m not blaming the bullying by any means, I believe it was more an accumulation of things, but…. I developed an eating disorder (a story for another time maybe).

I lost weight.

I lost a loootttt of weight.

I’m talking about 20kg in a very short amount of time…buuuut my back pain almost disappeared!

I was left with an infrequent deep bruise type pain in my lower spine and some slight morning stiffness… but nothing at all like the pain I had experienced previously!

As I eventually recovered from my eating disorder, and as the weight slowly came back, so did my pain….

However, as the years went on my pain never again seemed to correctly correlate with my weight.

I would be completely pain free for weeks… and then, as if out of nowhere I would have episodes of not being able to walk without a limp, being so stiff in the mornings that it was a struggle to make it to the bathroom and I would be reliant on long warm showers to function.

The pain also had moved – initially in primary school I could clearly feel the pain very deep and extremely low in my coccyx… but as the years went on, my pain resided in my lower back, just below my ‘Dimples of Venus’ and completely free from my coccyx….

I mean, at the time I thought – pain is pain right? I didn’t take any notice or recognise the significance of a change in the type of pain or where the pain had moved too (the medical student in me now is shaking her head haha)

I lived my life attempting to avoid things that I thought could potentially flair the pain up, but quickly became frustrated when I did absolutely nothing, yet was once again stuck down with pain and stiffness.

Ok so now this pretty much brings us to the present …. 14 years after the initial ‘trauma’ that I assumed was the culprit to my episodically bad back for all these years.

We had just returned from our honeymoon and my husband and I decided to sign up for the City To Bay Fun run.

I was super eager to complete the trivial amount of running for ‘Day 1’ of my program… it literally was only 2 lots of 5 minutes of running because I knew I could just build it up day-by-day, and pooof I’d be a pro runner by the end of it!

I finished my ‘run’ and felt amazing! You are not even puffed Tenae, you got this, your running game is strong and this 12km is going to be nothing!! haha…then I felt the ever so common deep aching pain in my lower back – but I wilfully put it aside and continued onto the rest of my workout.

That night the pain only continued to get worse.

I spent the night holding back the tears and relying on heat bags and a wedged pillow between my knees for some relief while counting down the minutes until I could have more pain medication.

The next 4 days were exactly the same.

I was limping, the nerve pain was back in full force and I was waking up during the night in pain!

That was it. 

I had to go back to the doctors – surely, I wasn’t going to live the rest of my life like this?!

I desperately told my story to a doctor who specialises in spinal pathology and chronic pain management.

He ordered x-rays and blood tests and I went back for a follow up appointment a couple weeks later.

This is when he pieced together my history, examination and prominent imaging and blood findings … and diagnosed me with ‘inflammatory arthritis’.

So, what is arthritis?
The term arthritis can loosely be broken down into;
· ‘arthr’ which is likened to ‘joint’, or ‘limb’, and
· ‘itis’ which means ‘inflammation’

Therefore, ‘arthritis’ is a term for a group of over 100 conditions that affect the functioning of bones, muscles and joints – i.e. rheumatoid arthritis, osteoarthritis, psoriatic arthritis…. ever heard of gout or lupus? Well guess what, they are also under this ‘arthritis’ term as well!

But isn’t arthritis something that only happens to old people?
Well my friend, you are mistaken…as was I before medicine!
Arthritis has no age bias, but it does have particular ages that it is most common in depending on the specific type of arthritis. 

The common symptoms of arthritis include;
· Pain
· Stiffness
· Decreased range of movement
· Swelling, redness or warmth in a joint
· Muscle aches and pains

These symptoms can come and go, may be mild, moderate or severe, and can stay stable for many years or may progressively get worse over time.

Now, my story is unique to my specific type of arthritis and it manifests in me as severe and very painful sacroiliitis (low back) and hip joint pain and stiffness.

The unfortunate reality is that as awful as the symptoms are, arthritis isn’t just painful joints – it can cause permanent joint damage.

What specifically is inflammatory arthritis then?
Inflammatory arthritis is a broad term that describes a group of diseases (rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and others), and is also known as an autoimmune disease.

So, normally your immune system is useful yeah? It is protective and creates an appropriate inflammatory response to pathogens that helps to rid the body of disease or infection.

Buuuuut, what happens when an autoimmune disease is at play is the immune system ‘forgets’ what itself looks like.
So, it will come across say, a joint, and be like ‘woaahhhhhh buddy, you do not belong!’ and it then attacks it via an influx of immune cells with consequent uncontrolled and excessive inflammation instead.

Interestingly, I now know that the initial ordeal I suffered in primary school probably has nothing to do with my current diagnosis or pain. 
Yes, it was traumatic, and yes it caused me a great deal of pain at the time. However, that has completely healed, and it has been my inflammatory arthritis that has been giving me grief for the last few years! Also, hence the change in the type and location of pain I have!

So, what can we do from here?
Unfortunately, there is no cure.
But the broad goals for any type of arthritis (or disease in general really) is to improve daily function, prevent further deterioration and further joint damage, reduce pain and increase the quality of life.

To accomplish this – I like to group my management plan for any disease into conservative, medical and surgical options.

My conservative management includes keeping a healthy and active lifestyle to prevent the stiffness that commonly occurs with immobility and maintaining my non-smoker status (smoking has been shown to make symptoms worse!)

My medical management options include pain relief, non-steroidal anti-inflammatories (‘NSAIDs’ – ‘Nurofen’) for the pain as well as stiffness (remember the driver here for the symptoms is the out of control inflammation, so getting that under control helps significantly!), disease-modifying anti-rheumatic drugs (commonly just called DMARDs – and usually only used in those who do not respond to NSAIDs) and biologic response modifiers (commonly called ‘biologics’ – again usually reserved for those that NSAIDs don’t work in).

Finally, my surgical options involve arthroplasty (joint replacement) or arthrodesis (joint fusion) – but I’m hopeful to avoid these for as long as possible! 

I have been enrolled in a spinal rehab program and thankfully have a great medical team around me to help with the pain and prevention of disease progression! 

My rehab team includes a physiotherapist and an exercise physiologist who both aim to improve the function I currently have and to give me a repertoire of movements and exercises I can do on both ‘good days’ and ‘bad days’.

So, there we go, I am 26 years old, and I have arthritis!

It’s a thing.

It’s an annoying thing, it’s a very painful thing, it’s a thing with potential to get progressively worse…
but it’s a manageable thing and there are far worse things I could be having to deal with! 

So, I’ll put one limping leg in front of the other and continue to count my lucky stars for another day! 

As I sit here, slippers on my feet, throw blanket over my legs, cup of decaf tea by my side (because duh its after 7pm and I want to sleep tonight! haha), I ponder … is age defined by how I physically feel?
(because if so, I’m about to celebrate my 67th birthday!) …
or is it really defined by how much more living I still have to do? how much worth I believe I still have to offer?

There are plenty of people living with chronic, debilitating illnesses, and I’ve seen it with my own eyes, they are the most vibrant, intellectually stimulating and full of life people I have ever met, with enough drive and passion to sustain a small country! 

So, forget the number of candles on your birthday cake, and forget what your physical abilities may or may not be – you are more than your age and what your body allows you to do – own that, be fully engaged and get on with making your life meaningful in whatever way that is for you!

Tenae,
xxx

“Turn your wounds into wisdom.”

Oprah Winfrey