I woke up one morning in 1988 with a sore back.
As the pain continued to increase, I consulted my general practitioner who referred me to an orthopedic surgeon. After some tests, I was told that there were no problems and that the pain should go away. It didn’t.
A few months later, I was reaching under the spare bed to find something stored there when I cut my finger on one of my son’s arrows (he was doing archery at the time). The sharp pain made me pull into myself and when I tried to get up off the floor I found I couldn’t move and an ambulance was called.
After a couple of days in hospital I was given a mylogram which involved injecting dye into the spinal cord and a series of x-rays and CT scans. I had a disc prolapsed that was wrapped around the sciatic nerve on the left side. Two weeks later, I was operated on by a neurosurgeon to remove the prolapsed disc. After the surgery I experienced pins and needles in my left leg and numbness in my left foot. I was told that this would go away within six months. It didn’t.
The pins and needles sensation turned into a burning feeling and eventually spread to my right leg. I also have joint pain in my hips, groin, knees and ankles.
The past four years I have also developed the burning pain in my arms and joint pain in my arms and hands. I have patches of numbness across my back.
I was sent to various specialists who could find nothing wrong. I was diagnosed with carpel tunnel but tests proved this was not, in fact, the case. I’ve been told that I have some sort of neurological disorder which has never been identified. I’ve been tested for multiple sclerosis, HNPP (or Hereditary Neuropathy with liability to Pressure Palsies) and other nerve-related things which have all been negative. I have had a number of MRI scans and the most information I’ve received after a scan is that there are problems in my spine but none of them can be fixed surgically. I apparently have arthritis and wearing of the bones in the spine.
I have been put on various medications including morphine, NSAIDs and codeine (all of which I am allergic to) and spent over a year on oxycontin which helped the pain for a while but needed to be increased regularly before it stopped being effective. It also pretty much turned me into a zombie and had a major effect on my new and short-term memory functions. One medication which did ease my symptoms was way out of my range of affordability.
I was told what not to do - bending, stretching, lifting - pretty much don’t do anything that will put pressure on a nerve, which means don’t do anything at all.
I lost all fitness, couldn’t sleep, couldn’t do the most basic household chores, gave up leisure activities such as bowling, camping and going out with friends. I could no longer work or drive a car. Depression was and is (not not necessarily pain-related these days) an issue. I needed to use a walking frame or stick to get around.
I have been living with chronic pain for about 11 years now. While the severity of the pain fluctuates I am never pain-free. For years I was treated like an idiot by doctors. I was told it was all in my head and called a hypochondriac.
I think the main effect of being in constant pain was isolation and depression. Not having a “real” diagnosis causes huge problems with not only doctors but also family members and friends. After a while I even started believing that I was crazy. Not being able to do the things I used to take for granted or that I enjoyed in the past because it might cause more pain made me pull away from everyone. Having to rely on other people to do things or go places I saw as a real failure.
I strongly believe that education is vital. Doctors need to know about chronic pain and how to deal with those of us who suffer this condition. The public need more information on pain as well.
I did some pain management classes through the Royal Melbourne Hospital which were helpful in a limited way.
After years of frustration trying to get a real answer from the medical profession I did some research on the Internet and heard about Dr Jane Trinca and the Barbara Walker Centre at St Vincent’s Hospital in Melbourne. I had to argue with my GP at the time to get a referral as he thought I was “doctor shopping” and should just accept my life as it was.
I was put on a waiting list that was over 12 months long but when I finally attended the clinic I found it wonderful.
Finally here were medicos that actually seemed to know something. After trialling a new medication which was ineffective I was asked if I would like to participate in the START program. Another six- month wait and the program began. After the three weeks on START I began making lifestyle changes and have continued these changes at home.
There need to be more programs like START in more places and the waiting lists need to be dramatically reduced. It took almost nine years for me to get an explanation of what chronic pain is and effective strategies to deal with it. To my mind, that’s really not good enough.
It has been two years since I completed the START program and I have now become independent once more. I can care for myself and my home. I enjoy outings with friends. I set achievable goals and work out the best way to achieve them. I volunteer two days a week and am studying part-time off campus. I am still in pain every day but the pain does not control my life.