How I live with Chronic Pain and Cervical Dystonia – part 1

By Leah Dwyer

Remember that time you woke up one morning with really bad neck pain? It hurt like crazy to rotate or flex. Brushing your teeth and washing your hair was agonising. Driving was almost impossible and at the end of the day you felt like you were going to scream or cry because the paracetamol or ibuprofen you were taking had done almost nothing to dull the pain. Now imagine waking up like that every day for almost 9 years.

Nine years ago I fell while running backwards at a mum’s race at my son’s school. I lay on the oval for a minute laughing then got up and drove to the gym for a training session. Three days later my neck was stiff and sore. I could barely rotate to the left or right and the pain was about an 8/10. I went to my Physio and we decided it was probably whiplash. Three weeks later my neck was still as sore as day three. Two months later a head tremor had begun and the pain had not abated. Four months later I was sitting in a neurologist’s office discussing Botox injections and trying to digest the fact that I had just been diagnosed with a rare neurological condition called Cervical Dystonia (CD). The neurologist explained that there is no cure for CD and very few effective treatments. CD is characterised by severe neck pain, limited range of motion, constant tremor, abnormal head posture and involuntary muscle spasms. Botox is the most popular treatment. There are very few drugs and most of them are sedatives.

I went home that day and cried my eyes out. I had gone from being an outgoing, confident, strong, happy 45 year old to a dribbling mess in 3 hours. The way I saw myself had changed significantly and I felt I had no hope at all. I spent the next week at the bottom of a bottle of Drambuie.

I live with chronic pain and I am determined to live well. Chronic persistent pain is confusing and depressing. It is physically and emotionally painful. Some days I have not wanted to leave the house and other days I have been determined to soldier on. Some days I have left work with a smile on my face after a long day only to completely collapse in tears in my car on the way home. Some days I have felt so good that I thought I was getting better, only to wake up the next day feeling exactly the same as that first day three almost nine years ago. Some days I completely crumble and spend the day in bed.

Living well with chronic pain is not easy. It’s hard to live with relentless pain day after day after day. Pain is complex, weird, frustrating. Over the years I have tried almost every treatment for Cervical Dystonia. I have seen many medical specialists and spent a lot of money. Some treatments have helped for a short period and some have helped for a longer period. I have learned a lot over the last nine years.

These are some of the important things I’ve learned:

  1. Keep moving in spite of the pain
  2. Learn everything you can about pain
  3. Massage is an effective treatment for me
  4. For the very bad days I have found a great Mexican Tequila!

Over the next couple of months I will write in depth about my life with chronic pain and how I live well to the best of my ability. I will explain pain and why it is so important to keep moving. I will also explain why massage is such a great treatment for muscular pain and the latest evidence behind the treatment. As far as the tequila is concerned, Patron is my favourite but you are free to choose your own fallback for those very bad days!

Read part 2: Regular movement and Chronic pain – Part 2

You can learn more about Leah’s Remedial Massage services on her Remedial Massage page here.

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