Pain is a constant companion, sitting is painful

Denise, Australia -

Posted 2018-10-14

My journey of pain began close to Christmas. I was visiting my family in Canberra and feeling very enthused to become fit and healthy. If only I knew that this simple activity of walking would erode all feelings of well being. The mantra of "no pain, no gain" echoed through my mind as I climbed a steep hill behind my brother's house.

I began to puff and pant as I climbed steadfastly to the top. It was a difficult climb but not unbearable. A few people gave me a cheery wave as they quickly overtook me. I climbed to the summit and took in the spectacular view around Canberra. I thought to myself how easy it was and I became determined to continue the climb each day for the extent of my stay.

The next day I resumed my walking, however, I noticed as the evening progressed my tailbone became very sore. It hurt to sit and for the rest of the evening I perched on a frozen bag of peas.

The day of my departure quickly arrived and I waved my family off not looking forward to the eight hour drive ahead. My teenage daughter and son settle into the familiarity of the long trip. They were used to it and silence quickly took over as they became lost into their phones/ipads. I found it difficult to get comfortable. My tailbone ached and I bunched a jumper up underneath me for support. Regular Panadol didn't elevate the ache.

I assumed the ache would dissipate after I arrived home but the pain took on a mind of it's own and made sitting very difficult. Finally, I gave in and visited my local doctor. I was completely unaware that my visits to the doctor would become regular as clock work over the next three years.

The word coccydenia became very familiar and the search for answers to this terrible pain took over my mind. Anti inflammatories were completely ineffective and the pain continued. Sitting was painful and I became very adept at sitting on one "butt cheek". People around me had no idea the pain I was in and I was horrified to think that this condition could become "chronic". Surely no one could put up with this level of pain?

The next few months became a search for help as my pain medication increased. My brain was foggy and I felt perpetually tired as I tried hard to appear "normal" to the people around me.

My first attempt at a steroid injection straight into my coccyx gave me hope. This happened in the doctor's office. After the simple procedure the doctor smiled and stated that I should feel relief soon. I walked with a stiff gait and waited for the pain to disappear. Unfortunately, the pain remained the same.

I searched the internet for answers for this debilitating but unfamiliar condition. I visited an osteopath who manipulated my coccyx.

He stated that my coccyx was in the wrong position and he attempted to move it back into place. This was ineffective and the pain continued.

The next few months was filled with searching for relief. I tried back specialists, chiropractors, physiotherapists, acupuncture, massage, sports physicians while taking pain medication for relief.

I noticed that the pain radiated to my right hip and it became difficult to walk. A spinal MRI was unremarkable other than normal wear and tear in an average person in their 48th year.

A MRI on my hip displayed a little more information. It showed osteoarthritis which surprised me thinking this was a condition for the "elderly". I was now lumped into the "chronic pain" category and a variety of medication was tried for nerve pain. Each medication had side effects, nausea, headaches, insomnia, anxiety. I persevered but the pain continued and the pain in my hip worsened.

This was taking it's toll financially and my mental health was taking a beating. I continued to work in a haze of pain, looking at the clock for the time I could take medication for the burning ache in the base of my spine.

One particular day the pain became too much and I was placed in the local hospital to manage my pain. Morphine injections took away some of the ache, it seemed to dull the world around me however the pain continued.

I read about pain and I learnt that after an injury in some people the neural pathways became established and the brain continued to receive signals for pain long after the injury repairs itself.

The more I researched the more despondent I became. I hated taking opioid medication. The stigma attached to these strong medications was not positive. The longer I was on these medications the more I needed and it appeared the less effective they became.

I visited a neurosurgeon who looked at me with concern. There was nothing he could do. He suggested visiting an orthopaedic surgeon. Perhaps the pain in my hip was contributing to my coccyx pain? Grasping at straws I considered a hip replacement. I certainly received mixed responses to this operation. Most people stated I was too young. I believed them, I was too young I didn't want this operation. I kept thinking, could the pain be coming from the hip? Maybe my odd gait was contributing to my coccyx pain?

I pushed this to the back of my mind determined to get on with life. Foolishly I attempted another drive to Canberra. I wanted to see my family and I thought if I used a coccyx cushion I would be fine. The drive caused a huge pain flare and I spent most of the visit in bed increasing pain medication. Heat pads etc were tried but only really provide comfort not relief from the agony in my coccyx bone.

My hip continued to ache and I was on the public waiting list for a hip replacement. I was told a minimum waiting list was two years. I joined private health insurance with the wait being 12 months for a hip replacement operation.

I was forced to reduce my hours as a teacher as the pain was too much and my movement was limited. I was taken off yard duty and this only increased my despondency as it increased yard duty for the rest of the staff.

I started to wear a mask. When someone asked, "how are you?" I would reply "good thanks". Life has become a series of compromises. Pain is a constant companion, always lurking. There is no answer and I am forced to live with the pain.

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