A burning sensation in the throat and difficulty breathing: smells tormented environmentally hypersensitive Sakari for years
The symptoms caused by disturbing smells were so severe that Sakari could not sleep and had to move several times. Persons with functional disorders may have severe symptoms although no medical cause can be identified for them. Sakari found help for his symptoms at HUS Outpatient Clinic for Functional Disorders (currently Rehabilitation Outpatient Clinic for Persistent Symptoms).
Sakari suffers from environmental hypersensitivity and reacts especially to smells. The situation has now calmed down and his symptoms are mainly under control. A few years ago, however, things were quite different.
The brightness of the summer finds its way into the tidy, light-coloured apartment and so do the sounds from façade renovation in the neighbouring building. It is already warm outside, but the window must be kept closed because of the noise and dust from the renovation work.
Sakari is usually eager to let fresh air in. Over the years, he has even based his choice of home on good ventilation and cross-breeze.
Sakari suffers from environmental hypersensitivity and reacts especially to smells. The situation has now calmed down and his symptoms are mainly under control. A few years ago, however, things were quite different.
The symptoms began in 2019 in the old apartment that he was renting. The apartment was going to be sold and Sakari would have to move. He began to feel a pain in this throat and a sharp smell in his nose. However, a clear cause for the smell could not be found. Soon the symptoms became so strong that Sakari could no longer stay in his home.
“I went to stay at a friend’s for a couple of nights. When I returned to my apartment, the symptoms also returned and I wasn’t able to sleep at all,” Sakari recalls.
That is how the continuous moving process began. Sometimes, Sakari lived in a hotel, and at other times, at friends’ or in different rented apartments. But the symptoms did not ease although the place changed.
It was really important that someone understood my situation. It’s not hypochondria, the symptoms are always real.
Diverse symptoms of functional disorders
Environmental hypersensitivity is a type of functional disorder. Functional symptoms and disorders mean long-term symptoms or syndromes for which no medical cause can be identified. However, the symptoms are real and they may also be fairly strong. At worst, they may destroy mobility or eyesight.
The underlying cause for the disorder is found in the central nervous system. The brain overinterprets even normal sensations and produces a run or die -level reaction, which in turn causes different symptoms in different persons. In the end, even just an impression of the cause of the symptoms may activate a reaction.
In Sakari’s case, it is specifically the different smells or just the thought of bad indoor air that usually triggers the symptoms. Sometimes, his brain produces an experience of a smell even though the smell does not really exist. Before, the reaction could begin if he saw or even thought about the apartment where the symptoms began.
Smells that are easy to recognize, such as the smell of burning fat, are not necessarily a problem to Sakari. The smell may be irritating, but the cause of it is easy to understand. Chemicals and other unidentifiable smells and odours, on the other hand, are interpreted by the brain to be a threat, which in turn triggers the symptoms.
When the symptoms began, Sakari could not for a moment get rid of his thoughts. It was frightening.
“I looked for the source of the smell and causes for the symptoms. Could the smell be caused by the sofa or damp damage in the bathroom? There has been a lot of debate about the dangers of indoor air problems. My brain identified a terrible danger that didn’t exist in reality. This then caused a burning and tingling sensation in my throat.”
Sakari tried to find solutions for his situation by giving up all his clothes, things or furniture and by moving to a different apartment. Practicing living in a new place began with only a bed and one set of clothes. He also spent as little time as possible in the apartment. At home, the windows were always open so that indoor air would be as fresh as possible.
In one apartment, he had found an optimal location for the mattress, a place where the air flowed best. It helped at first. In the end, he could not escape the symptoms anywhere.
Although the situation was difficult, all smells and scents were not bad. For example, the scent of the washing powder of a person close to him felt safe.
Work held daily life together
Sakari works in general upper secondary education, teaching the advanced syllabus in mathematics. Even though the symptoms sometimes made sleeping impossible, he has always been able to work.
“Fortunately, work has always been empowering and fun. Even if I am tired when I go to lessons, I feel refreshed afterwards and work gives me strength.”
Sakari has lived in his current apartment for about three years. It has not always been easy, but he has decided not to give up as moving has never improved the situation.
In the corner of the room, there is a sofa upholstered in white fabric. It used to belong to his daughter. Every now and then, Sakari thinks he can distinguish a disturbing smell from the sofa. However, he has decided that the sofa is safe.
“Sometimes, when I'm marking exams on the sofa, I don't notice the smell at all. But when I put the computer away and realize where I am sitting, the symptoms may come back. I even asked my daughter if she could smell it, but she couldn’t.”
Relief was found at the Outpatient Clinic for Functional Disorders
For some reason, Sakari waited for a while before seeing a doctor when everything began. During the very first appointment, the doctor told Sakari he probably suffered from a functional disorder.
As a mathematician and a firm believer in science, he found the doctor’s explanation credible. However, the symptoms got worse and worse.
In the end, help was found at the Outpatient Clinic for Functional Disorders, which was established at HUS in spring 2019 and had just been opened. The outpatient clinic determines what kind of support and rehabilitation patients suffering from functional disorders need and organizes it. Sakari was a client at the outpatient clinic for a year.
Before the start of the therapy, it was checked that his symptoms did not have a physical cause. He also had to put his sleeping back on track. For a year, he took sleeping pills.
“When the central nervous system is overloaded and you can't calm it down, you also can’t sleep. Medication didn’t always solve it, either, but mostly anyway. Sleepless nights are painfully long and you feel hopeless.”
The multiprofessional care at the Outpatient Clinic for Functional Disorders included discussions and group therapy, among other things. The groups always included a social worker and a psychologist. In the group of six people, everyone had a different type of functional disorder and symptoms.
“It didn’t help straight away, of course, but it gave me a feeling that I was at least doing something about it. The therapy also gave me hope of getting over it. It was really important that someone understood my situation. It’s not hypochondria, the symptoms are always real,” Sakari says.
Routines and peace and quiet help
At the moment, the situation is calm and the symptoms have mainly remained under control. However, if Sakari gives it too much thought, the symptoms resurface again.
His current condition is a result of his perseverance in teaching his body new ways of doing things and new routes to his central nervous system. Calming down the central nervous system is essential for recovery. For example, the therapist advised him to do everything as slowly as possible, whether he was drinking coffee or moving about at home.
“It’s a constant message to the brain that everything is ok. Some people also find breathing exercises helpful, but because my symptom is related to the throat, the exercises could draw too much attention to the symptom. It was also important not to keep sniffing things any more and to generally pay attention to something else than smells.”
Fortunately, work has always been empowering and fun. Even if I am tired when I go to lessons, I feel refreshed afterwards and work gives me strength.
Routines are also important. Sakari keeps a regular sleep rhythm regardless of the day of the week. However, the time of the year and the light seem to make him need less sleep.
“I usually go to bed at 22:30 and sleep for 7.5 hours. During the bright nights, half an hour less is enough, but I still try to stay in bed for 7.5 hours.”
Hobbies also provide daily life with a rhythm. Sakari walks ten kilometers every day. He also plays floorball, and beach volley in summer. Even work is routine in a good way.
“I am lucky to have a profession that is so suitable to me. I count the same math exercises year after year, and I still enjoy them,” he says and laughs.
After his treatment at the outpatient clinic ended, Sakari has continued psychotherapy. He has also trained as a peer support person for other people suffering from environmental hypersensitivity or functional symptoms and disorders. Although Sakari has not had any mental health problems himself, at times he felt like giving up because of the symptoms.
“I wouldn’t have wanted to stop going to the Outpatient Clinic for Functional Disorders because it gave me so much hope and a feeling of security. Now I think that when something as terrible as this happens, I hope my experience will at least be slightly useful to others and I want to help others to rehabilitate more quickly. It is different when the person telling you that you will get over this is a peer, not a doctor.”
Rehabilitation for environmental hypersensitivities takes place through an individual path
Functional symptoms are symptoms or syndromes caused by activation of the central nervous system’s protective responses. They significantly impair a person’s work ability and functional capacity. Other diseases have been ruled out as causes of the symptoms. Environmental hypersensitivity is one of the most common functional syndromes.
Everyone is familiar with functional symptoms in exciting situations. For example, performing in front of people may cause palpitations or tension in the neck and shoulder muscles. When they become sensitized, these protective responses are very disturbing and occur widely across the human body.
“At our outpatient clinic, treatment starts with an initial doctor’s appointment, during which we listen to the rehabilitee carefully and with empathy, validating what the person says. After this, we provide an explanation for the symptoms through a model describing the central nervous system’s protective responses, go through the factors maintaining the symptoms and draw up an individual rehabilitation plan,” says Deputy Chief Physician Olli Kontulainen from HUS Rehabilitation Outpatient Clinic for Persistent Symptoms.
Persons suffering from environmental hypersensitivities are a common group of rehabilitees at the outpatient clinic. Persistent fatigue is the most common symptom and there is often overlapping between different functional syndromes.
“The rehabilitation is similar by nature to any other significant lifestyle change, such as beginning weight management. There are common features in rehabilitation, but in the end, an individual path must be found for everyone to enable real rehabilitation,” says Olli Kontulainen.
Functional symptoms are common. It would be essential to learn to understand that alongside diseases, symptoms may often be either entirely caused by functional mechanisms or the mechanisms may at least make the harmful effects of diseases worse. Rehabilitation requires understanding and commitment.
“I encourage everyone – healthcare professionals and patients alike – to take an interest in treating and having treatment for functional symptoms. We all have a lot to learn here,” Olli Kontulainen says.