The disease is getting more attention now

Photo of a water aerobics group

Lewis, 49 years old

“I suspect that a lot of men don’t dare go to a support group. They might be put off by the common belief that fibromyalgia is a psychological illness that mainly affects women. I think we men have to be more open about the illness and dare to talk about it.”

The pain started when I was a teenager, around the age of 15. It started off as pain in my knees, and I had an operation for that. I later started getting pain in various parts of my body.

Late diagnosis

Fibromyalgia was only diagnosed in 2015, though. Even though my orthopedic doctor had already said he suspected it might be fibromyalgia back in 2006. That suspicion was checked out in hospital too, but not confirmed. Back then, their approach was based on "tender points" and I didn’t have the 11 out of 18 tender points needed for a .

I went to countless doctors because of the pain after that. Nobody mentioned fibromyalgia anymore or, if they did, then only to say that there's no such illness or that it's a purely psychological thing. Unfortunately, lots of doctors aren’t familiar with the condition or don’t accept that it's real.

I've been seeing a pain management specialist since about 2015. She made the .

I'm often written off sick and regularly have treatment in hospital. I have other conditions as well as the fibromyalgia.

Painkillers help a little, particularly when it flares up

I've been taking painkillers for about 20 years now. It's a way to try to relieve the pain, but I still have pain. Unfortunately, there's currently nothing that really helps with this condition in the long term.

I also took high doses of opiates for two to three years. They didn’t help at all. By the end, I even had to have withdrawal therapy because of the opiates. I went to a psychosomatic clinic for that for eight weeks.

I take vitamin tablets as well as the painkillers. And I take antidepressants – they improve my mood a little and help me to be more active during the day. Other patients often have a problem with taking antidepressants because fibromyalgia isn't a psychological illness.

The constant pain makes me very tired and affects my sleep, so I take sleeping tablets because I'd never get any rest otherwise.

The pain changes but it's always there

The pain I feel is always changing. It can get better or worse. Sometimes my whole body hurts, with every movement. The pain is particularly bad in my joints at the moment – in my shoulders, back, ankles and toes. It feels a bit like very bad muscle ache. The pain is there every day.

I used to keep a pain diary, but I don’t anymore. I now keep a journal about things that do me good, like nice experiences or if I had a nice day. That felt a bit strange and unusual at first, because I was used to always focusing on the pain. But it feels pretty normal now and helps me to look at things from a different angle.

I have to learn to cope with the pain and integrate it into my life because it’s never going to go away. It will be there forever.

I've been going to psychotherapy for about a year now, have found a very good pain therapist. We talk about current issues in my life, but also work through things in my past. We develop strategies to accept the disease and help me to cope with it. Talking about it all helps me.

I can’t work anymore

I'm not doing very well at the moment and I applied for retirement last year. I'm actually a craftsman, and after being off sick for a long time I retrained in the area of trade. I did that job until two years ago, but by the end I could only work six hours per day. I simply couldn’t do more than that, and in the end I couldn’t even manage six hours anymore.

Fibromyalgia is still quite unknown

I was treated in a psychosomatic clinic last year, and after that I went to a rehabilitation clinic with multimodal therapy for five weeks. But I wasn’t really happy there. There were only a few fibromyalgia patients, and I got the impression that the staff didn't really take us seriously.

Even though the disease has had more attention in recent years, getting it acknowledged is difficult, even among doctors. It often takes a lot of patience to find the right doctor.

Making changes in daily life

We've changed our diet a little in the last few years. That has become an important topic for us. We try not to eat meat, and instead eat lots of fruit and vegetables. That really helps. I ate very healthily and took lots of exercise at the rehabilitation clinic, which felt really good! But it isn’t always easy to stick to these things in everyday life. The temptation is sometimes too great.

My partner gives me all the support she can, and even comes to the support group with me. We talk about the disease a lot and have lots of understanding for each other. She also has a chronic disease, which certainly helps us to understand each other.

Exercise is difficult at first, but helps

I used to spend a lot of time outdoors at work, but that changed when I retrained. I now go to water aerobics, physiotherapy and to the gym once a week. Exercise is very important to me, even if I have to overcome the pain at first. At some stage it gets better and the exercise feels good despite the pain.

I do a lot of relaxation exercises at home, and I discovered my love of painting in hospital! I find it incredibly relaxing and it helps me to forget the pain a bit.

I like going to the sauna. It’s good for my body and mind. But I've also been in cold chambers, and that was good, too. Using a cold chamber can be tricky, though. It's usually only possible as an in-patient.

The only man among women

I've been going to a support group for about two years. It wasn’t easy for me to take that step as a man. The first time I went, there were only women there... but I wanted to talk to other people about my illness. You have to be prepared to open up a bit, and I found that difficult at first.

It’s not a problem now, though. Going to the group really helps me. We talk a lot, share tips and suggestions for everyday life. But we also have a good laugh. I've made some proper friends there now.

I suspect that a lot of men don’t dare go to a support group. They might be put off by the common belief that fibromyalgia is a psychological illness. But I think we men have to be more open about the illness and dare to talk about it.

About half a year ago, I took over the running of an already existing support group together with my wife. It's often a lot of work, but I have the goal of raising awareness of fibromyalgia among men, and that keeps me motivated. Maybe I can do a tiny little bit towards breaking the silence for us men.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Created on May 24, 2022
Next planned update: 2025

Publisher:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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