– I don’t get any better from being negative. I don’t get healthier, I don’t get more help and I don’t get less pain. It’s just as well to be cheerful, because it’s no one’s fault. Amanda Pettersen has complex regional pain syndrome, CRPS, also referred to as the “suicide disease”. – You can imagine that the blood in your body has been replaced with something flammable, and that everything inside you burns 24 hours a day. It feels as if the entire left part of my upper body is on acid. A new report from Oslo University Hospital says that last year around 1,500 Norwegians were diagnosed with CRPS. In 2021, there were somewhere between 500 and 1,000 Norwegians who received the same diagnosis. Sogn Avis first told the story about Amanda Pettersen. Complex regional pain syndrome (CRPS) Complex regional pain syndrome is an abbreviation in English for CRPS (Complex regional pain syndrome) and is a pain condition that occurs in a limited area. The condition is relatively rare. CRPS usually affects an arm or a leg. Symptoms can be intense, burning, cutting, sharp or aching pain together with swelling, change in skin colour, change in temperature, abnormal sweating and hypersensitivity in the area. Most cases of CRPS come after an acute injury to an arm or a leg in the form of an infection, a broken bone, after a sprain, a surgical intervention or a stroke. Source: NHI.no Lost index finger The syndrome came after an accident in 2015. Pettersen was drunk and had spent the morning waking the village from a loading plane. When she was about to jump down from the loading platform, a gold ring on her left index finger got stuck in the ladder she was holding. – I tore off my entire left index finger, but didn’t realize it at the time. It was probably so painful that I didn’t feel anything. Amanda Pettersen uses the car to get her mind off the pain in her body. Photo: Oda Bjønnes Hanslien Learning to live with pain She was operated on both the same day and in November of the same year, but the pain did not go away. Three years later, in 2018, she was diagnosed with CRPS. Then she tries other treatments, and, among other things, has a spinal cord stimulator operated on in 2020, which was supposed to numb the pain with electrical impulses, without success. After the procedure, the pain gets worse. Surgical interventions can cause the pain to increase, especially if the intervention is carried out in the area where the pain originates. – Right now there is nothing I know that will help me. Because I know that the pain can get worse, I have put everything on hold until I know for sure that it will make me better. Pettersen therefore started looking for other solutions. Stays at various rehabilitation centers were saved in order to learn to live a life with pain. – It is the psyche that matters most. When you can’t do anything physically, you have to work with what you can. – Still things we don’t know – CRPS is a difficult and very demanding pain condition, especially for the patient, but also for those who will try to treat this condition, says Tom Johannessen to news. He is a senior doctor at Unicare Steffensrud, which is one of the rehabilitation centers that Pettersen has been to. – There are still things that we in the healthcare system do not have a full understanding of in terms of cause, development, treatment, prognosis and so on. She comes from a family that loves cars, and really developed an eye for vehicles when she got CRPS. Photo: Oda Bjønnes Hanslien Pain relief in the car Pettersen has tried to meditate several times to get his mind on something other than the pain, without particular success. Then the car became a tool in everyday life. – If I’m lying in bed and having a pain attack or struggling with difficult thoughts, spending a couple of hours in the car often helps. When I come back in, I feel quite a bit lighter. – Acceptance and feeling of mastery At the rehabilitation center they work with pain management, activation and psychological treatment. Johannessen says that a form of acceptance and feeling of mastery is important when you struggle with pain for up to 24 hours a day. – An expression says “it’s not about how you feel, but about how you take it”. Although this sounds a little too simple, such a way of thinking is also important for CRPS patients.
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She lives with pain around the clock, but in the car she finds peace – news Vestland
