This blog post is a series of 6 on chronic pain, and the struggles that Akkie endured. You can read the first blog post here.
The orthopedist thought I should "bite on my teeth" a bit more. He didn't want to know anything about pain control. That was only symptom control, he thought, and nothing was done about the cause. At that time, I had no knowledge whatsoever about chronic pain. I believed him blindly, but in the meantime I completely lost faith in this doctor. Through the mediation of the health insurer I ended up at a specialized back clinic. Here they looked at my pain with a completely different view. At a fast pace I received all kinds of injections and nerve blockages with the aim of reducing pain. Unfortunately, none of the treatments yielded long-term results. The conclusion was: Failed Back Surgery Syndrome, nerve damage caused by previous operations. In the end my pain had a name and a cause! I was so happy with that. Finally I was able to tell the people around me that "it wasn't in my head".
A new treatment: Neurostimulation
I was eligible for a neurostimulator. An internal device in my spinal cord and abdomen that converts all or part of the pain signals to the brain into tingling. The brain is, as it were, put on the wrong foot. In the back clinic I was also referred to the book: 'De Pijn De Baas' van Frits Winter (Being the boss of your pain of Frits Winter). This book describes life with chronic pain, and what you can do yourself to get more quality out of your life with pain. I bought the book immediately and read it 3 times in a row. I found it a feast of recognition here and there, as if my life was being described:
- That my condition deteriorated more and more because I became more and more inactive.
- That I tried to hold on to what I could still do, but because of that I often went beyond my limits, so that in the end I only deteriorated more and more.
- That the pain got worse because I and the doctors I visited gave too much attention to the pain.
- That I did not do enough to focus my attention on something other than the pain.
- That I had to surround myself with people who did show understanding for my situation and people who hurt me with their misunderstanding had to keep their distance.
After 12 years of pain, sadness, despair and decay, I received the neurostimulator at the MCL in June 2013. I entered the operations with confidence. Research showed that a neurostimulator could give good results in FBSS. At the same time, the pressure I felt was enormous. This was my last chance for a life with less pain. If this wouldn't work, how would I proceed?
Ups and downs...
Fortunately, my positive feeling prevailed. The trial stimulation lasted a week. The result turned out to be good enough for the final placement. After the implantation of the NS I was not allowed to do much for 6 weeks. After that the rehabilitation started. I was very confident that this would be the beginning of "my new life". The physiotherapist who would accompany me had me do exercises every hour of the day. AND start with half an hour of walking a day, he said. This made me feel very stressed and put a lot of pressure on myself. All these emotions had a very negative influence on my pain. I was fed up with years of unbearable pain, had just completed 2 operations AND hadn't walked for years. And then suddenly a half hour walk every day? Starting with so much practice did not fit in at all with what Frits Winter described about building up activities; the so-called SALAMI technique, which I strongly believed in. That you have to slowly build up your activities within your limits and that you have to alternate activities with rest. You don't eat a SALAMI sausage all at once. I decided that I would become my own therapist.