The Balancing Act: Navigating Pain and Life with OI in Stockholm

34 percent of all individuals with OI report that pain has influenced their career choices, and 30 percent also state that pain affects their social life.

This is just one of the many facts we learned during the OIFE’s Balancing Life With OI conference in Stockholm at the beginning of June.

I had arrived in Stockholm ahead of time, and had a day and a half to explore the hilly streets of Stockholm before the conference began. As a result, at 2:30 the night before the conference, I found myself lying in bed with sore shoulders, unable to sleep.

Realizing I needed some rest, I had to leave the hotel and roll across the street to a 24-hour pharmacy to buy a pack of pain killers. There is perhaps no better way to prepare for a conference whose main theme is pain.

The conference spanned two days, featuring a packed schedule with speakers taking the stage one after another with 10 to 15 minutes in between. Facts and information were delivered like jabs in a boxing match, leaving attendees both wiser and somewhat dazed.

Definition of pain

The first speaker on the program was professor Audun Stubhaug, who delved into the nature of pain. He used the following definition, also employed by the International Association for the Study of Pain – IASP:

“An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”

The truth is, we all know what pain is when we feel it, but there can be significant individual differences in how we experience it.

He referred, among other things, to a Danish study that examined how patients experienced the exact same type of operation. Some felt almost no pain, while others reported experiencing maximum pain.

At the same time, he emphasized the differences in how acute pain and chronic pain should be treated. The goal with the former is to eliminate the pain during the period it is felt. Acute pain is often measured in hours or days and can easily be treated with anything from pain killers to powerful and fast-acting opioids. In contrast, the treatment of chronic pain should aim not only for pain relief but also for improved function and long-term quality of life for the patient.

Causes are complex

Mercedes Rodriguez Celin, a pediatrician at Shriners Hospital in Chicago, also referred to a study involving 861 participants with OI, where 42 percent reported experiencing chronic pain.

The causes of pain among people with OI are often complex, she explained. It can be orthopedic, such as fractures and deformities, but it can also be related to muscle weakness, unstable joints, poor alignment, or neurologic and inflammatory issues.

Gastrointestinal problems are commonly observed among individuals with OI, and there can be various causes for them. Factors such as body proportions, with many having a small upper body, as well as scoliosis and chest deformity, which leave less room for the stomach and intestines, can lead to symptoms like stomach pain, acid reflux, and constipation.

However, tissue-related issues or factors related to diet and activity level can also contribute to the gastrointestinal related pain.

Increasing focus on diet and activity can therefore help alleviate these problems, as explained by Lena Landre Wekre.

Pain is the most common symptom

OIFE’s own Impact Survey also reveals that among the symptoms reported by individuals in recent 12 months, pain is the top scorer. Out of the 1,442 participants, 1,181 experienced pain in the past year, while fatigue, soft tissues, and scoliosis followed suit.

Many also reported experiencing sleep problems, but Marie Coussens from Ghent University in Belgium conducted a study where 35 OI patients were equipped with an accelerometer to measure their sleep quality.

The study overall showed a reasonable amount of sleep, with participants averaging 7 hours and 49 minutes. However, the sleep study also revealed that OI patients were awake for an average of 45 minutes during the night, significantly more than other individuals.

Touching testimonies

Many of us are experts in living our lives despite limitations, and this was evident at the conference through a series of touching anonymous testimonies that were read out.

I had the pleasure of speaking with American Karen Braitmayer about balancing work, ambitions, and pain, while Kis Holm Laursen shared her experiences of parenting a child with pain, and Ann Bett Kirkebæk talked about the impact of pain on relationships and sex life.

Even though we have learned to cope, many still report that pain has a negative impact on their physical lives, leisure activities, and daily tasks.

On the other hand, studies show that individuals with OI only experience a minor impact of pain on their ability to lead independent lives and on their close relationships with family and friends.

Written by Jacob Ø. Wittorff, OIFE Board Member

Check out more photos from “Balancing Life with OI” in our new Photo Gallery.