When even a gust of wind causes a grating sensation of pain - Arssi, 23, fell ill with a rare pain disorder due to suspected malpractice: I cannot stand this, even the treatment costs are horrifying

19-year old Arssi from Turku was living a normal life, until a day in October when he slipped and got a knee injury, the belated treatment of which caused Arssi to develop a rare pain disorder. Now his life is a constant battle with pain every minute of the day.

Now 23-year-old Arssi Tikkanen's days are spent sitting on a kitchen chair in his single flat in TUrku. He can only sit in certain positions in his chair.

Tikkanen is hurt by laying down. Even a small gust of wind causes a grating pain in the leg. Nowadays he only travels between hospital and home, by ambulance and while heavily medicated.

Tikkanen suffers of a rare pain disorder called CPRS (Complex Regional Pain Syndrome), which usually develops from an injury, such as a bone fracture. The injury can also be caused by soft tissue damage or an infection.

Tikkanen's disorder is of the worst type and he says he's setting a precedent in Finland.

[Photo description]: Tikkanen has started YouTubing, because he wants to make his illness known and tell the world how painful it is. In addition it helps him pass the time by giving him at least something to do during the days.

Everything began from slipping

Tikkanen says that everything began in October 2012 when he was crossing a road to a bus stop. He fell over and injured his knee. A plaster was put on his leg, but after that a struggle began with the public healthcare system.

- After six weeks they told me that I'm a healthy man. I walked with a limp, but the treatments stopped.

Tikkanen says he frequently went to complain about his leg at the local health centre, because it didn't feel like it had healed. Only later was it noticed that the kneecap was dislodged and it had accumulated bone damage. The doctor's prescribed treatment was rehabilitation, they did not agree to operate.

- At first they decided that they won't operate, the knee will be treated with rehabilitation. I did everything I was told and followed the instructions. The knee did not improve and I visited a private doctor. He told me right away, that the knee must be operated immediately.

Finally Tikkanen's knee was operated using endoscopy on public healthcare, but not everything went as it should've.

- It was operated kind of correctly, but kind of incorrectly. The operation destroyed nerves.
As a consequence Tikkanen has developed a pain disorder, which is now spreading in his body.

(Sub-title) The worst are the lower limbs, I cannot wear any trousers on them.

Sometimes Tikkanen sinks in his own thoughts and falls silent. His thoughts however are dominated by powerful sensations of pain, which sometimes momentarily steal his attention completely. Previously the situation was more tolerable, since the disorder was only present in one leg.

- From my left leg it has spread to the other, and then slowly to the back and arms. The worst are the lower limbs, I cannot wear any trousers on them.
Touching the lower limbs hurts, even a gust of wind causes pain

- I need to check the weather  to determine if I can go out. That's why traveling is so difficult. I haven't managed to spend my time at cafes. I've had to stay here at home or the hospital.

Previously the hospital journeys could be made by taxi, but these days the pain is so great, that it can only be done by ambulance while on an IV.

- I cannot even go lay down, so I am drugged. I cannot at all lay down on a bed.
(Subtitle) Sisu the cat brightens the days

In his Turku flat Tikkanen is not all alone. On a daily basis his mother comes to care for him, alongside with an assistant. A painful convulsion could surprise him any moment, so he cannot be left alone for a second.

A black and white friend goes around the flat, active and going. Originally Sisu the cat was meant to be a therapy animal, but it didn't help.

- The cat keeps me company.

Sisu came two years ago. Does his name say anything?
(Sisu is a Finnish word that is somewhat equivalent to 'guts')

- Yes it does. I have guts, that's where it came from. It just came to my mind right away. The cat was a surprise, when my mother brought it during Christmas.

Sisu has become a beloved pet for TIkkanen. Even though he cannot stroke it, it moves near him.

- It is very nice, but sometimes jumps on the tables. It has learned to be mindful of my leg.

(Subtitle) Nearly graduated as a baker, a future was waiting ahead

During the incident Tikkanen was a 19-year-old young man. Life seemed bright. He was going to graduate as a baker and he was planning to continue in university. Military service was also ahead. In addition to all this, he had friends and a girlfriend. Now these are nothing but a memory.

- I had many friends, but most left, TIkkanen says.

- Some work colleagues have stuck around and visited, but they have been here less and less, because I spend such long times in the hospital. I understand that friends have their own lives, but you wish they would visit more often.

One friend has stayed beside Tikkanen for the whole time.

- My childhood friend has been with me all the time. He is like ab rother to me and we think of each other as brothers. We know each other since we played in the sandbox, Tikkanen says with a little joy in his voice.

(Subtitle) Before being injured, TIkkanen was also a male model.

How do you manage to go on?

- I owe it to my mother and childhood friend, Tikkanen concludes.

- It bothers me greatly that my father died in 2006. I would have needed my dad's support so much.

Tikkanen feels that he does not get enough help for his illness, because the pain is insane, and they cannot be brought under control.

- We have gone through so many different treatments, that there's nothing left anymore. Every method has been tested, but none has helped. They installed a spinal cord stimulator too late, it's a device which sends electrical signals to the nerve centre. But it was installed too late. We've tried all sorts of things, but nothing works.

Tikkanen says he is often strongly medicated and on an IV.

- It gives me a short moment when I can spend time not feeling the pain. I can lay down in hospital conditions, but even there it's pain. I grimace and scream there.

The future is uncertain

The illness has become so chronic, that Tikkanen believes it has left permanent damage. The future is uncertain however.

- I don't know for now. Let's go day by day.

He says the pain is hard to describe.

- It is almost like a burning sensation, slipping in and out.

His greatest wish is that they could make his arm function and the pain could be brought under control.

- Right now it's not under any sort of control. The pain is what controls me and my days.

(Photo description) Tikkanen cannot use his bed. He only sits in his chair. They have recommended he go to a nursing home, but he does not want to leave his own home. It's not a good solution, because you get depressed there easily. That just adds to the pain and feeds this illness. Tikkanen says.

Accessory equipment would be needed

Tikkanen spends his days sitting on a bench. He'd like a better bench, because the current one is hard to sit in.

- There has to be something better, this is poor to sit in and all the time they have ot pick me up and adjust my position. A better chair would probably have to be tailor-made, with tailor-made back supports, because I cannot support my back with this.

- We've thought about a better chair for a while, but there's not much money.

Sometimes the ceiling fan above Arssi causes pain. At that time Arssi requests the ventilation to be reduced.

- I should probably get better ventilation. That one in the celing is not the best, because it hurts.

The radio plays in the background so it wouldn't be entirely quiet.

Tikkanen's home is peaceful. There's a radio on the table, but Tikkanen cannot enjoy music.

- The radio just plays there so it wouldn't be totally quiet. The assistant tries to make some jokes and brighten my day. Pain stops me from thinking. I cannot focus on anything and I cannot really think about anything.

Tikkanen says that they have made a complaint of malpractice in his case. He would like money as reparations, even though it wouldn't take away the pain.

- The treatment costs are horrible, I have to pay for ambulances and hospital visits. My medication costs are insane. I cannot get medications covered on the public healthcare, because the medications related to my illness are not listed on the covered medicines. It is because it is such a rare illness.

Arssi's greatest wish is bringing the pain under control and spending time with his family, such as in a cafe. That would require bringing the pain under control first.

- With proper medication I could control the pain and live a more normal life, where for example wind would not hurt me. At the moment the pain is so insane, that I cannot stand this.