This month I had surgery for a Medtronic SynchroMed implantable pain pump.
I suffer from a very severe restless leg syndrome (RLS), which is now named Willis-Ekboms disease (WED) here in Sweden. WED is a complex disease with many variations in both symptoms and medications. I have tried almost every medication that is recommended, and a few more, all without long-lasting results.
I have terrible pain. I feel like the muscles in my legs and arms are going to burst as soon as I try to rest and not move my body. I also have very strong muscle jerks in my legs every 6-8 seconds.
Worst of all is a horrendous, obnoxious feeling of discomfort from deep inside my body. It is very hard and difficult to explain, and absolutely impossible to stand.
I have been tormented with this for about 30 years, each year with more torture.
Two years ago I reached the limit for what I could cope with. I was not able to sit or lay for more than 15 minutes before those terrible pains and unpleasant feelings started. I had not slept more than two and a half hours a night for 10 years, and I was so tired that I thought I lost all my cognitive skills.
After I read about a small study by Swedish researchers on seven patients with severe RLS who had good results with an implanted morphine pump, I asked for a spinal pain pump.
My pain doctor told me a pump was impossible because of my ileostomy and some scars on my stomach. He gave me morphine pills instead. I took them and found some relief, but soon I had to take more and more and had some side effects.
Two years later I reached the limit for what my body could take in oral morphine and started to fight for the pump. And I had to fight — fight against lack of knowledge and ignorance, and fight against costs and slow administrations. I wrote several e-mails and letters, and I do not know how many phone calls I made, but at last I won!
On December 6, 2013, I got my Medtronic SynchroMed implantable pain pump. It is loaded with only .96 milligrams of morphine, but that is enough to help me. For the first time in many, many years I can sit down to enjoy a dinner, a movie, or a bus ride. I can sleep a whole night through without being forced to get up and walk every hour.
I am in less pain, my legs do not jerk, and my body does not send those alarm signals of unpleasant discomfort. I am free!
I know that it is very new for me and I know about the risks with the pump. But I’m sure about the skills of my doctor and the security around the filling procedure. And I do trust the Swedish hospital system.
Most of all, I know what it’s like to live without pain relief.
I’ll never take my pump out!
Kerstin Thuresson lives in the small town of Ljungskile on the west coast of Sweden.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.