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My Pain Feels Like "a crushing feeling at the top of my neck”:

 

Video transcription of Andrea's patient story:

I actually had pain since childhood, I had a hearing problem so I spent a lot time in and out of hospital as a child so I've almost had pain all my life and not known any different. During my 20s, I had a snowboarding accident and I ended up getting into the medical system and eventually after going to many, many different doctors I was diagnosed in the UK with spinal stenosis which is a degenerative problem in your back and that's when I started getting into the medical system here in Ireland in St Vincent's Hospital and was treated for neuropathic pain. But subsequently since that I have been diagnosed with a disorder called Chiari malformation 1, which is a rare brain malformation and also POTTS. So I suppose I was born with all of these conditions but spent a lifetime in pain because they weren't diagnosed or managed or observed properly.

My pain feels like a crushing feeling at the top of my neck initially like something is crushing, crushing down on my body all the time. A terrible pressure that's there. I remember seeing fireworks one time and looking at them and thinking how beautiful they were, but they reminded me of my pain. Like a shooting pain but then all of the pain that sporadically comes out from the firework and you don't know where it's going to land and some will be dark and some will be brighter and some can be stronger and some can be softer. So it's like a pain that takes over the whole body but the initial one is like a crushing, pounding, heavy feeling of my whole body is being condensed and I'd love to just stretched it out a little bit. But sometimes there is that shooting down pain as well, like almost like electric shocks, you don't know where they are going to land and for what reason. But it is something that is always there with me and it's like a low hum even on my best days there's pain in the background, sadly.

It has affected my dreams and ambitions because I really wanted to have a certain amount of children and that's been very difficult for me. It effects absolutely every fibre of my whole life and it effects it every day. It effects it on such a huge level that it's even hard to put into words, just how profound the effect is.

If you're experiencing pain, your pain is real so don't suffer in silence. Go to a doctor, if they don't believe you, go to another doctor. Get diagnosed and get into the pain system and make sure you look for pain and support. Chronic Pain Ireland is a great charity and there's support out there. On a personal level, there's so much you can do to empower yourself. Be an empowered patient by talking about your pain to your family and friends, by writing about it in a journal. If you don't have anyone to talk to about it, I journaled all my pain – getting all that negativity out is very, very good. Spacing and pacing yourself. Spacing your activities out and pacing yourself allowing yourself enough time to do them, don't try and do everything all at once. As well as that you can try to have positive affirmations around your house – I am well, I feel good today – almost like positive self-talk. If it just is getting out of the bed, getting down to make a cup of tea, getting out of the house for 5 minutes, you've had a really good day. Little things like that will build over time but your pain is real – there's help out there and don't suffer in silence.

April 2016, IRE/MPF16 0004

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