Experience from: My search for contact with fellow sufferers

I got for the first time in 2005 chronic pain in my left leg, from my buttock to my toes. The neurologist said an alarm in my body went off because I kept going beyond my limits. If I didn't change my lifestyle I would also get it in other parts of my body. She suggested following the rehabilitation program “Control the pain”. I then followed this program in a hospital.
In 2008 was ik een half jaar weer aan het werk en alles verliep goed. Ik werkte 3 halve dagen en had niet het idee over mijn grenzen te gaan. Toen kreeg ik MT wat je kunt vergelijken met MS.
In addition to the tingling, sensory disturbances and chronic fatigue, I had nerve pain in my arms and hands. Every time I used my hands and arms the pain flared up. Even though I was taking nerve painkillers. I could no longer work. It was quite a challenge to learn to deal with that. But also to get through the day when you can't do much with your hands.
In 2015 I was diagnosed with early osteoarthritis in my right knee. The bone was on the left side of the bone. It then turned out that I needed a half artificial knee. After the operation I was in so much pain! I also felt powerless. Suddenly I couldn't walk anymore. Walking with crutches with my nerve pain in my arms was not possible at all.
Finally I went to the doctor. I asked if she knew a peer group for people with chronic pain. No, she didn't know her, but I was able to go to the hospital because there was a group for cancer patients. I could join in with that. I got emotional because I thought: “She doesn't understand anything!”. Then she asked: “Have you processed it?” I asked, “What?”
She said, “The MS!” I said: “As far as you can accept that, yes. But not all this pain on top of that!”
When I got home I started googling again for the umpteenth time. Looking for contact with fellow sufferers. Eventually I came around at the Pain-Hope Foundation and spoke to a nice lady. After another conversation like that, she asked me to come to the basic training I thought why should I go there? I have already followed the training “Control the pain”. So what added value does this course have? But when she indicated that there were beds in the room so that if you got too tired from the bed you could just continue doing the course, I was convinced.
So I went to basic training with my notebook and my pen. But that turned out differently. It wasn't a lecture, but you had to do it yourself. With your fellow sufferers in the group. My fellow sufferers have helped me a lot. Also during the course, of course. But the fellow sufferers were the most valuable to me. You only have to say one word and they understand. I loved that!
In my area there was no contact meeting for people with chronic pain. So I started my own group in Meppel under the guidance of Pijn-Hoop. And now, after so many years, I have finally found satisfaction in my day by dedicating myself to Pain-Hoop and my fellow sufferers!

Wilma Heeres
PS: I also changed GPs and now have a great GP who understands me!

Patiëntenorganisatie Pijn-Hoop
Pijn-Hoop is een patiëntenorganisatie vóór en dóór mensen mensen met chronische pijn.
De patiëntenorganisatie richt zich op mensen met wat voor pijn dan ook. Dit kan ook pijn zijn waarvoor geen duidelijk oorzaak is te vinden. Dus iedereen met chronische pijn, van welk soort dan ook, kan zich aansluiten bij Stichting Pijn-Hoop.







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