If you think this editorial is going to be an OI-version of “Fifty shades of grey”, I have to disappoint you. It’s going to be about pain & and pleasure in a non-sexual way. And how those two can sometimes affect each other.

Let’s start with the positive part. It was my great pleasure to take part in the celebrations of the Brittle Bone Society’s 50th anniversary and the 25th anniversary of OIFE. Together we went back to where it all started, in Dundee, Scotland. There Margaret Grant laid down the first bricks in what would later become a world wide OI-community. Two years later Gemma Geisman in the US followed in Margaret’s footsteps by initiating the OI Foundation. 23 years after that, there was a tall Dutch guy called Rob who had the idea that people and groups in Europe would benefit from sharing experiences. He saw that people were doing the same mistakes and coming up with the same solutions in several countries. Only without sharing them with each other. So that is what we aimed for at the OIFE AGM 2018: People from different countries and in different roles coming together to share – experiences and ideas about running organizations and about OI-research. And it was a pleasure to be part of it. I must admit, I had dreaded five days of meetings in a row, with OIFE’s Annual General Meeting as the grand finale, but it went surprisingly well. The euphoria of meeting the OI-crowd covers the feeling of complete exhaustion. An amazing group of people! No wonder I have a passion for OI. It’s hard work a lot of the time, but it’s also a total pleasure.

But these marathon events also wear on my body. I don’t have the stamina I had before and sometimes I just have to take a break and lie down. Other people would say that they are tired. But I blame it on another thing…pain.

Pain can wear you completely out and sometimes I think I mistake it for tiredness. But keeping your mind occupied can be a good coping strategy for pain. As a good sarcastic American friend of mine said: “I go to work even with fractures. I just need something to take my mind off the negative. So I go to work and just get on with it.”

So OI euphoria and work can be good painkillers. But stress is bad. It gets stuck in my body and increases the pain in my neck, in my hip or locations of old fractures. So in addition to keeping my mind busy against chronic pain, I must admit that I use painkillers.

But why should this be something to admit in the first place? Numerous times when I tell people with OI that I use prescription drugs every day, they often get ‘the look’. “Really…? Every day you say? Not only when you have fractures?”

Many people with OI never use any painkillers at all, by choice. Perhaps except when they have very severe fractures. Some use painkillers on bad days, some use them every day and some need strong stuff only to get out of bed. People are different. And pain is so difficult to measure. And talk about. It’s almost a taboo both among people with OI and professionals. But how do we get more knowledge on such an important issue if we don’t dare to talk about it?

I am all for prioritizing alternative ways of coping with pain. But we cannot pretend that many people don’t use and need painkillers in periods as well. The problem is that the knowledge is so scarce. What kind of methods should you use if your OI-pain is muscular, if it’s bone pain, if it’s neurological, if it’s stress related, fear related…whatever? Very different methods I guess. But many are not aware.

My hope is also that we judge each other less. Painkillers are perhaps not the right solution for you. But others might need them to be able to get out of bed or keep a job. Perhaps some need it only in rehab to become more active? Because exercise is probably the best painkiller of them all. But if you don’t get out of bed, it’s hard to reach the gym…

Coping mechanisms is something the new pain study from Spain is going to look at. Even if you don’t have chronic pain, the researcher Ruben still wants to hear from you if you have OI. The survey is available in both Spanish and English. You can read more about it in the newest edition of OIFE magazine.

And to be honest, I think all people with OI have some level of chronic pain. But when you relate your pain to the worst femur fracture you had, it kind of makes the pain scale from 1-10 useless. Perhaps we need different tools? Or perhaps we just all need to move to Spain, where the climate is warmer?

Anyway, I hope you’ll enjoy the newest edition the magazine and read it – with pleasure…

Ingunn W. – OIFE president