24th November 2017

Some 7 years ago I had a career working in Child Protection. This coupled with family and social commitments I had very little time to “just be”. I am a wife, a mother, mother-in-law, grandmother, a great grandmother, daughter (my 92 year old mother is currently in a nursing home), sister, friend and the list goes on. I was involved in many community activities and had lots of hobbies which kept me fairly active.

I had particularly bad osteoarthritis in my left knee and it was recommended that I have a knee replacement. I had my right knee replaced some 6 years previously and whilst this was no picnic I had recovered sufficiently after six weeks to return to normal activity and work. This was not the scenario the second time around. Instead of getting better the pain increased to the point where it was necessary for me to be readmitted to hospital for its management. Little did I know what lay ahead.

My entire left leg became red, then purple and was so swollen I thought it could not go any further. I was having difficulty weight bearing and could not stand anyone or anything to touch the leg. I was diagnosed with Complex Regional Pain Syndrome (CRPS). I had never heard of this condition and a nurse in the hospital gave me some information she printed from the Internet. I could not take the information in and all I could focus on was the fact that there was no cure for CRPS. Anger, shock, despair were just some of the feelings I was experiencing. These feelings later changed to a feeling of overwhelming loss.

I was referred to a Pain Specialist and so the roller coaster ride which is CRPS began. I had several spinal blocks, was placed on heaps of medications and spent a couple weeks in Rehabilitation. Whilst these strategies were less than effective the Pain Specialist decided I would ideally suited to having a Spinal Cord Stimulator inserted. Now this should have been pretty straightforward, but the trial was not successful as the Drs were unable to implant the leads due to the arthritis in my spine. After much discussion it was decided to proceed with the implant of the Stimulator and that I would have a laminectomy to place the leads. Now at this stage I was still expecting the Doctors would be able to come up with the magic answers/treatment which would give me my life back……. It was not to be. The Stimulator was implanted but the signal seemed to be exacerbated rather than lessen the pain. Several attempts to come up with a suitable stimulation ensued to no avail.

It was at this stage that the Dr suggested that I see a psychologist. At first, I was horrified. I thought that he did not believe I was experiencing the high degree of pain that was evident. I went along to the appointment with some level of trepidation. It turned out however that this has been the single best intervention that I have undertaken. The psychologist talked to me and explored with me the high degree of grief and loss I was going through, and once we had resolved many of these issues we began to explore mindfulness as a way of dealing with the pain. I am able to use this form of meditation to deal with the pain when it is at its worse. However, it is not always successful.

I still use medications, physiotherapy, hydrotherapy and when things get on top of me Ketamine infusions are of use. The infusion is probably the only thing I have found that completely stops the pain but can only be administered as an inpatient in hospital under strict supervision, so it is not an option easy to access.

People ask me what I have learnt through all of this. I have learnt that there is a distinct lack of understanding about chronic pain both at a medical and community level. I experience pain all day, every day. Some days are worse than others and sometimes I am unable to wear shoes or clothes that touch the parts of the body that are affected by this condition.

You see my CRPS has spread. It is now manifested in the entire left side of my body including my face and scalp. I have patches in my right leg and right arm as well. I have learnt that my husband is more wonderful than I knew and is a very supportive partner for which I am very grateful. I have learnt that people know very little about this condition which has been around since the American Civil War. I have learnt who of my friends are committed to friendship in good times and bad and want to learn about the condition. I have learnt that each day is a new beginning and it does matter if the exhaustion is so great that it means I have to rest on the bed after having a shower.

Luckily not all days are wretched. The pain in my case fluctuates. On a scale of one to ten some days are around 5 or 6 and about 50% of days the pain is off the scale……meaning it is more than a ten. These are the days when it is hard to maintain a positive focus and move forward but I can, and I do.

I have also learnt that “it is what it is”. Some days are blessings some days are cursed, and it is important to remember that that’s just the way things are.

Anne Gleeson
Blog: crpsandme.wordpress.com