Pain Management is now my full time job. I am in a degree of pain ALL OF THE TIME!
I have to monitor what I do every hour of every day. If I concentrate thoroughly on avoiding the activities that aggravate the pain and simultaneously do activities that ease the pain, I can feel quite well. However, as soon as I begin to behave “normally” the pain and other symptoms immediately begin to increase. There is also a distressingly random aspect to my pain with horrifyingly intense unprovoked flare ups.
Here is my story. A back story about pain. There is absolutely nothing special about me, although it took years for me to learn this, years before I realised I was not alone. Mine is a familiar story, familiar to GPs, familiar to orthopaedic surgeons and neurosurgeons, familiar to physiotherapists and possibly familiar to you if you have experienced lower back and leg pain that has developed into chronic pain. You may have heard medical practitioners use terms including: degenerative disc disease, spondylosis, radiculopathy (sciatica) and possibly neuropathic pain or neurogenic pain. I am not in any way medically trained, I am a patient at the pointy end of medical terminology and I can not offer recommendations or advice. By telling my story of a gradual decline into pain induced disability, I aim only to share my experience and hopefully reassure others in a similar situation that they are not alone and they are most definitely not imaging the pain.
I do not want sympathy and definitely no pity. I was not easy on my body when I was younger, I believed, like most people, that I was indestructible – spending long work hours at a computer, many hours commuting in a car and then driving as part of my job, lifting furniture at home that was too heavy for me, leisure time hauling my kayak along river banks, carrying over sized rucksacks, falling off climbing walls and crashing my mountain bike. As my first spinal consultant pointed out, none of these activities may have contributed to my pain, it could be plain bad luck.
I’d experienced episodes of back and hip pain throughout my teens and twenties, but didn’t think anything of it. Then in December 2004 I experienced a spontaneous completely locked back when getting up off the bed. This is worse than it sounds. In late 2005 a herniated intervertebral disc at L5/S1 caused nerve root compression (it’s amazing how quickly you pick up the jargon when you become an “expert patient”) causing excruciating pain and a complete loss of reflex in my right ankle with foot drop. I opten out of surgery and waited for the herniation to shrivel up and the nerve root inflammation to subside while I had a course of cortisone injections.
This is all pretty dull common and garden back pain stuff, although it did take the best part of a year to “recover”. In 2007 I had a large sequestered herniation of the IVD again at L5/S1. The neurosurgeon I consulted said, and I quote verbatim, “there’s been an explosion in your back”. I’d been in such desperate misery for so many weeks that I begged for surgery. The pain relief from the lumber microdiscectomy and hemilaminectomy was immediate but, as I’d been warned beforehand, the nerve damage I’d picked up in 2005, which affected sensation and proprioception in my right foot, persisted.
Life seemed good for a while. I did have discomfort but I was working full-time, cycling regularly, walking my dogs every day and working in my beloved garden. Then one day, when I was picking up a pot in my garden, I felt something give way in my spine. It was early 2009 and my life changed dramatically at that moment, but I didn’t know it then.
A new MRI scan, this time with an injected contrast due to scar tissue, and a return trip to my neurosurgeon offered no insight. Apparently my suffering was out of proportion to the degree of contact between the disc at L5/S1 and the nerve roots. There was some evidence of scar tissue possibly pressing on the nerve root but this was brushed aside and he could offer no explanation for the pain and weakness in my right leg, especially after sitting. In fact he seemed more concerned about my original surgery and insisted that I agreed the original surgery was a success. Frankly I couldn’t give a monkey’s about the original surgery, I was more concerned about my current state of misery. He didn’t recommend surgery, repeated spinal surgery for pain has diminishing returns so success was unlikely.
Back to the GP and a referral to a wonderful physio who actually wanted to help me but was reluctant to intervene too much while I was in so much pain, so we tried acupuncture and very subtle pilates exercises that had no side effects and at least I felt like I was doing something. I still do my pilates abdominal exercises several times a day to support my lumber region. I struggled back to work in September 2009 but for only a few hours a week with the help of my agency. My condition worsened over the months and I started using crutches and more Oramorph. In March 2010 I started the 6 week Expert Patient Programme to help me learn to cope with having a long term health condition, more on this later.
Sadly work eventually ceased altogether in April 2010.The agency I was working for do deserve some praise, they were incredibly understanding and accommodating. This was a really low point with much feeling sorry for myself, oh the shame. I felt such a failure as a human being because I could not sustain a job. Without the support of an amazing husband I would have been destitute. The inability of the neurosurgeon to explain my pain made me feel disbelieved and even more ashamed of myself for being so controlled by the pain that apparently I was not even supposed to be feeling. I felt depressed, angry and frustrated.
All the terms listed in the first paragraph had been mentioned to me at different times by different doctors, along with horrifying treatments including spinal fusion, but with no conclusion concerning my prognosis. Although it is difficult to control my rage in the face of vagueness from doctors and consultants, I can understand them to some extent because giving me a definite answer would involve admitting that they cannot cure me and this makes them feel that they have failed me as a patient. But I need answers even if the answer seems unpalatable. This is my one and only life and I felt they were making light of it.
The exception is my current G.P. who can actually be quite facetious but he does it with such refreshing irony followed by blunt honesty that I can forgive him. He’s basically admitted (and I don’t see this as negative) that there is no cure for my condition, it’s a case of learning to live with the pain and disability, which sounds terrible but patients just have to accept that doctors and modern medical researchers are not miracle workers. He explained the theory of over sensitised nerves, this is one of a number of theories on why chronic pain develops in some people and had first been mentioned to me by the Professor of Orthopaedics I had seen years earlier. This conversation with my G.P. resulted in a referral to what I have now dubbed “the last resort clinic” at a noted Orthopaedic hospital. This “last resort” clinic is headed by a Musculoskeletal Physician with a particular interest in sports medicine, occupational therapy and pain management. He has seem many patients in similar situations to myself and written a book based on these case studies. It has taken months to get an appointment with him but I remain positive and hopeful.