My Pain Journey

Like so many people with chronic pain, my journey has been a long one.  Unfortunately, it probably does not make for a very interesting  story.  Well, not interesting to anyone but me.

I have however found hearing others pain stories helpful.  Sometimes I learn from them.  Sometimes it’s just nice to know I’m not alone.  With that in mind, I thought it might be useful to write about my journey, trying as best I can to cut it down to the main points only.

So, here I go.  Pain has been a part of my life for as long as I can remember.  As a child I was always  spraining / straining / pulling tendons in my ankles and wrists.  Crutches and splints were a regular part of my childhood.  As you can probably guess, I was an attractive child.  Little did I know, life was about to make me even more attractive when I developed Temporomandibular Joint Disorder (TMJ) at the age of 10 and was handed a splint (think: mouth guard) to wear 24/7.

That was it, I have been in chronic pain ever since.  Dodgy knees joined the party at 14 years old – six surgeries later my protestations that I was still in pain fell on deaf ears.  Doctors couldn’t / didn’t want to figure out what was wrong so I gave up on them.  I decided I knew my body better than anyone else and took my care into my own hands. This worked well at times, not so well at others with my shoulders, neck and back not wanting to miss out on the fun.

In September 2013, my body decided it had been through enough and gave up.  Literally every muscle, joint, fibre of my beginning screamed out in the worst pain I could ever imagine.  To put the icing on the cake, it decided to do this in unison.  That time I woke up from knee surgery to find the leg block had not worked and I could feel everything – the sawing of my bone and the screwing of my tendon to the tibia.  That had nothing on the pain I was now experiencing.

I honestly thought my life was over.  Unfortunately, I was not being dramatic in thinking this.  I felt as though I was a brain inside a body that could not stay still and be pain free let alone move.  I went home to my parents and they became my 24/7 carers. When I could sleep, I would wake at all hours and scream for mum.  In she would come; top up my pain killers, take off my blankets (which were too heavy for my body), help me to the toilet etc etc etc.

The one thing I had going for me at this point was my GP.  He was actually now retired but lived down the road from my parents and, having been kept up to date on my decline from mum, wanted to help.  I came home one Friday night, the GP came over Saturday morning and that was it.  He flew into action.  “You need to take her to hospital now”, he told my parents.  “This can’t wait until Monday.  I fear she may deteriorate”.

Over the next month I jumped I don’t know how many waiting lists and got into see some of the most genuine, caring specialists I could ever have dreamt of.  A myriad of tests later I was diagnosed with fibromyalgia and the long, difficult task of physical and mental rehabilitation began.

In February 2014, I met the man who would help to change my life the most, my pain specialist.  The day we met he admitted me straight to hospital for 2 weeks physical rehab.  During this time he also made me read Manage Your Pain to give me a better understanding of my body and how it worked.  By the end of the 2 weeks I didn’t want to go home, I was scared to.  I was doing so well in hospital and knew this would continue if I stayed.  I wasn’t sure what would happen if I went home.

As it turns out I was only home for 2 weeks before a space became available in a pain clinic my specialist worked with. Honestly I cannot speak highly enough of my 2 weeks there.  I learnt so much and came so far, both physically and mentally.

That was 13 months ago now and it is still a daily struggle but I like to think I am positive about my lot and will keep getting better and better.  That is not to say I don’t have days where I break down and can’t take it anymore, take last Tuesday for example….

Okay, looks like my “cutting down” hasn’t worked so well.  If you’ve made it to the end and you also have chronic pain, I hope my story gives you hope.  A specialist once told me he believed everyone could be helped. “People who come to me as hopeless cases aren’t.  I don’t believe in hopeless cases.  They are just patients who have not yet been put in contact with the right people.  That’s what I did for you.  I put you in contact with the right people.”  For everyone in chronic pain, I hope you get put in contact with the right people, the people who can help you.

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