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my pain feels like...

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My Pain Feels Like "a stabbing, throbbing in my lower spine”:

 

Video transcription of Ivan's patient story:

In February 2003, I was doing very long car journeys and I got this really worsening back ache in my lower back. Unfortunately, I ignored it and it ended up because I ignored it I had a disability for the rest of my life.

I have two symptoms from my pain, first of all this dull stabbing, throbbing pain – like a really bad migraine – right in the centre of my lower spine. And then if I don't get up out of the chair and remain seated – because I have no pain when I'm standing up walking or lying flat - it goes down my leg and starting at my toes, it goes numb and progressively works its way up my left leg so my whole leg becomes disabled. Every time I sit in the chair for more than 30 minutes, notwithstanding the medication I take, the pain commences and it just ratchets up incrementally for every 15 minutes I spend there. So what I do is that is my back's way of telling me – Ivan get out of the seated position, lie on the floor, forget your dignity – do anything to get out of it. So it really is a huge problem for every day events, be it meetings, going to the cinema, theatre or even going out for a meal.

So it's very difficult going to the theatre, cinema and I have all these little routines of places I go to. At the Olympia I would stand up at the very back and then the usher will come up to me and say 'sorry why are you loitering like that with intent', and I would say, 'sorry it's just my back'. And he doesn't know what way to look at me because you're not going to the toilet or whatever.

Then in the Stillorgan cinema I lie on the floor after about 30 minutes and, you know people are going in and out to the toilet, in darkness and they see this body on the ground and they think 'oh my god, somebody has died or fainted'. I say 'no relax, it's just my back'. So you can't tell them your life story, you just have to realise that once you get over your dignity, everyone else is a lot easier.

The big mistake I made when I had the first serious back pain from driving to Sligo and back on three or four journeys, was that I kind of thought this will go away or I'd stand up and harsh about and say mind over matter. That was a huge mistake. And to this day, the damage was done and when I woke up one day in bed I literally couldn't move. I was on crutches for several weeks, I will never let it get that bad again. There are parts of my toes in my left foot that I have no feeling in. So the critical thing is, pain means your body is telling you to do something about this. I left it far too late to get professional help and advice.

I think my story allows people to relate to a story where they are in pain. Now by going on to the website – mypainfeelslike.ie – you will actually be able to answer a questionnaire whereby the detail of you pain, whether it's a stinging, an aching pain, a numbing pain, a stabbing pain – there's actually quite a lot of difference – and it will help people to communicate and articulate with their clinicians in a way that will lead of a faster diagnosis and perhaps a much better outcome in terms of treatment.

April 2016, IRE/MPF16 0004b

If Ivans's experiences are similar to your own, take 'mypainfeelslike...' questionnaire to increase your chances to get a correct diagnose and adequate treatment.