– I could isolate myself for days and weeks. Had to lie in a dark room. I couldn’t watch TV because the sound was painful. If I opened the door, it hurt from the pull, says Kari Olstad.
She has the world’s most painful disease, complex regional pain syndrome (CRPS), also called the “suicide syndrome”.
– CRPS is like being tortured without a break. Sometimes I was in so much pain that I passed out from the pain.
Olstad eventually got such pain in her leg and arm that she had to use a wheelchair to get out of the house.
She is now receiving treatment in the US, and a few weeks ago she was finally able to get up from her wheelchair.
See the touching moment in the window at the top of the case.
Olstad posted a video on his private TikTok account to say that you should never give up. The video spread from the group of friends to the whole world, and so far over 10 million have seen it.
Facts: Complex Regional Pain Syndrome (CRPS)
- The syndrome usually affects an arm or a leg. Typical symptoms are intense, burning, cutting, sharp or aching pain. Along with swelling, change in skin colour, change in temperature, abnormal sweating and hypersensitivity in the relevant area.
- The pain is experienced as much stronger than what one would expect based on the original injury.
- The condition most often develops within 4–6 weeks after an injury.
- It is a rare syndrome, and there are only 2,000 new cases a year in Norway. Four times as many women as men are affected, and most patients are in the 50-70 age group.
- CRPS is divided into two subgroups: Type 1 without nerve damage and type 2 which has definable nerve damage. In the past it was perceived as psychologically conditioned, but research does not support this.
- Physiotherapy, cortisone courses or treatment with electrical impulses (TENS) are among the treatment methods used.
Source: Large medical encyclopedia, Haukeland hospital, nhi.no
Gets support from all over the world
Almost 22,000 have commented on the video, writing things like: “I’m crying with joy for you”, “I’m so proud of you” and “I cried as soon as I saw this”. The response comes in Norwegian, English, German, French, Spanish, Russian and a number of other languages.
– I have only received positive comments, smiles Olstad.
Started with an innocent accident
Kari Olstad was only 16 when she contracted the disease. CRPS often starts with a small injury that would normally heal after just a couple of weeks. This was also the case for Kari. She was a passionate alpinist, and during a training session on Narvikfjellet in 2018, she fell and hit her right side. She turned yellow and blue, but there were no fractures.
Still, the pain didn’t go away, and the leg only got worse. Eventually it has also spread to other parts of the body.
Five months later, she woke up to extreme pain. She had her first of a series of pain attacks.
– When I had these pain attacks, I went into the fetal position and screamed. I just wanted it to end.
Kari Olstad describes the pain as “being set on fire, and that the veins are full of petrol”.
– From the age of 16 I was treated with strong painkillers. This was before I had even been diagnosed.
CRPS is such a little-known disease that it took three and a half years for her to be diagnosed. She felt that the doctors did not believe her and that they eventually suspected that she was only looking for painkillers.
But when she was diagnosed, she was probably treated with strong drugs.
– I was given the maximum dose of morphine, but it didn’t help.
When she had pain attacks, she was hospitalized. There she was given ketamine and fentanyl, which are the same drugs used when putting patients under anesthesia:
– You will be completely lost. It is not comfortable because you are unable to speak and speak up. You don’t want to use drugs like that, says the 20-year-old.
But this did not help, and the pain spread to the hand. With immense pain in her hand, it was impossible for her to use crutches. Therefore, she became totally dependent on a wheelchair.
Kari Olstad had to wait for months for treatment in Norway and when she finally got it, she felt that it did not help. Eventually she became so desperate that she looked outside Norway’s borders to find treatment.
Go to the USA
She chose the Spero clinic in Arkansas in the USA. This is the same clinic that TV 2 help you talk about last autumn when Emma Reiakvam collected NOK 700,000 at Spleis to receive treatment.
Kari Olstad also made a Spleis collection and also managed to collect NOK 700,000, which financed the first three months of the treatment, as well as accommodation and air travel.
The Spero clinic is highly controversial among Norwegian experts since there are no research results showing that the treatment works.
Chiropractor Katinka van der Merwe, who founded the clinic, admits that not everyone gets well.
– Eight out of 12 patients experience complete remission, she writes to TV 2 help you.
Complete remission means that the patient is symptom-free.
She writes that the patients fill in forms about how much the pain has decreased during their stay.
– In 2021, this figure was 84 per cent. Because the severity of the illness of the patients who come to the clinic has increased, figures from August show that the figure is a 76 per cent decrease in pain.
TV 2 helps you cannot verify the figures because there is no research on the clinic’s results. Katinka van der Merwe explains that research is expensive and difficult to get funded.
For Kari Olstad, the treatment has worked. She entered the wheelchair with up to ten (max) in pain, but the treatment led to rapid improvement. The treatment plan is tough, and she has to use both the painful hand and leg.
After 16 days, she took her first steps out of the wheelchair. On the 29th day she was able to walk on her own. After two months she had zero pain for the first time and was jumping for joy.
– The other day I ran. I haven’t done that in nine years without pain, says Kari Olstad on the phone from the Spero clinic.
The 20-year-old feels that the clinic saved her life.
– I finally found someone who didn’t give up on me. I thought I was going to die in that wheelchair and never be normal again. So that’s why I started crying the first time I got up from the wheelchair. Because then I understood that this treatment works, says Olstad.