CRPS: ‘Like I’m being set on fire’ – Millie (23) suffers from severe syndrome

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“Suicide disease”: “Like I was being set on fire” – Millie (23) suffers from severe syndrome

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There is no genetic engineering in the plant

But don’t worry: they’re genetically modified

23-year-old Millie suffers from the terrible disease CRPS. Every touch feels like someone is burning her skin. What is behind it – and what gives the young woman hope.

Trigger warning: We also deal with the topic of suicide in this text. If you need help, please contact the telephone counseling service immediately on 0800-1110111 or 0800-1110222 (both free of charge). There are further offers of help for those affected and their relatives at the German Depression Aid.

“I remember that day so vividly. When I felt like my heart had been ripped into a thousand pieces.” With these words, Natalie Taylor describes the day when her daughter Amelia, known as Millie, felt the terrible pain for the first time. The pain that will make her life hell years later.

Millie (23) faints from the pain

“She told me that both of her big toes were on fire,” recalls mother Natalie in a post on the gofundme.com donation platform. At first she suspects her daughter’s new shoes are the trigger. A doctor suspects an inflammation in the foot. But the pain doesn’t go away. “Millie said her body felt like it was on fire. As if I was being set on fire.” The then 17-year-old could no longer tolerate being touched. She is suffering. Repeatedly faints from pain. Eventually she stays in the hospital for five weeks. Being “pumped full of opioids”. Doctors still don’t know what’s wrong with her. She ends up in another hospital. Stay there for two years.

At some point, the doctors find out what she has: she suffers from complex regional pain syndrome, CRPS – a disease that is also nicknamed “suicide disease”. In German: suicide disease. Because the suicide rate is particularly high in people with a severe form of CRPS.

Help for family members who are at risk of suicide

CRPS is particularly high on the so-called McGill Pain Index. This means that those affected feel the pain more than that of an amputation, childbirth or cancer.

This is behind CRPS

Doctors still don’t know why some people suddenly develop CRPS. Some suspect genetic causes. Joachim Ulma, chief physician at the Clinic for Pain Medicine at the Red Cross Hospital in Bremen, estimates that there are around five to 20 CRPS patients for every 100,000 people worldwide. After an accident, those affected have arm or leg pain for longer and more intensely than usual, even though the injury has been treated. They just can’t get rid of the pain, sometimes for the rest of their lives.

“Many doctors are not familiar with the disease,” says chief physician Uwe Junker. He treats CRPS patients at the Sana Clinic in Remscheid. It is particularly important to detect the disease as early as possible. “If we treat them in time, in some cases the disease will be over after just four weeks,” explains Junker.

The following symptoms are typical of the disease:

The person concerned had a supposedly harmless accident, for example pinched his thumb or dislocated his shoulder. Despite treatment, the pain persists. The affected area swells. The skin is very hot, sweat is formed. The affected area is motorically conspicuous: hand or foot tremble, can only be moved to a limited extent, are powerless. The patient suffers from paraesthesia. He finds even a brush that gently strokes the affected area painful.

Millie doesn’t want to give up

Since her diagnosis, Millie has suffered every day. Is exhausted, tired. Numerous comorbidities are diagnosed. “Your whole life is on hold. She feels trapped in her own body. There is no escape.” However, the 23-year-old does not want to give up. Her mother collects donations on gofundme.com. Millie is saving there for a special rehabilitation program to relieve her pain.

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