The pain both is and isn't in my head

Last updated 05:00 11/06/2014

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I wish I could wind back time to the day when I first hurt myself, and just skip that incident.

The injury has left me with complex regional pain syndrome (CRPS) and I've had it for 14 years now.

It's been a long 14 years of many doctors telling me it's in my head, it's not real, I'm just depressed.

It wasn't until I went to a specialised pain clinic that I found out that it isn't in my head in a psychosamatic way, but that it does involve the peripheral and central nervous systems.

So it is real, I told myself, and I got on a little bit of a high. Only then did I find out that the hard part was just beginning.

At times my legs or arms would just stop working. I couldn't move them and if I did I would be in so much pain I just gave up even thinking about it.

Being 10 years old then, I found ways to move around, sometimes dragging my legs or lumping along like a slug until the pain lessened enough that I could walk normally again.

Then my internal organs just stopped working. That was the worst - I couldn't rub the area, I couldn't walk it off. I just had to sit there and work through it or wait until the doctors did something.

I spent months in intense physiotherapy - it felt like I was training for a marathon. I walked 2km, used the stairs rather than lifts, but I wasn't making any headway with it.

As it became increasingly worse, I gave up and let the CRPS win. On the McGill pain scale, CRPS is above childbirth and above amputation of a digit. 

It makes you feel weak, tired, grumpy and most of all sore. You can't do the things you used to love doing, or even the things you never liked to do but had to do anyway.

Each day your body is on fire, your skin changes, you start to shake and tremble, your hair and nails grow twice as fast. you find it hard to wear clothes, to walk and even talk.

The worse part is that no one can tell unless you're screaming your heart out because of the pain.

Most people think you're putting it on, that you're too lazy to help around the house, get a job. 

My own family have a hard time coming to terms with it.

One day I decided to change that, to no longer get those looks and have to hear again: 'It's in your head'. 

I started to read up about the condition online.

In the end it was really simple as long as I had the right mindset: I had to walk, I had to eat right. And I had to understand that I was going to have bad days, but good days too. 

When I turned 18, I started to go walking, I found out I have coeliac disease and I got onto the right medications.

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It's taken me six years but now, in warmer weather, I can go months without the CRPS reminding me it's there. In colder weather I'm no longer bound to a wheelchair.

- Stuff


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