I've lost count of how many doctors I saw

Photo of a woman painting a picture

Kirstie, 49 years old

“You can’t see that I’m in pain. People think I look absolutely fine and just don’t want to work. I can often sense that. Because of that, I became really withdrawn and hardly met up with people anymore.”

I've been in pain since I was a teenager. That meant I often couldn’t join in with school sports or leisure activities and often felt like an outsider.

Over time, I learned to just accept the pain. I got married and had kids. The pain then took more of a back seat. Other things were more important and I just had to get on with it.

Pain in my whole body

Over time, I had more and more problems with my knees, and I had one operation after the other. But they didn’t help at all. I had a good orthopedic doctor. He didn’t lose his patience with me, even though nothing helped. On the contrary: The pain got worse and worse, and spread throughout my whole body.

The pain feels like muscle ache in my whole body. Every movement hurts. Some parts of my body hurt so much that I can't bear it if anyone touches them. But you can’t see anything from the outside.

My orthopedic doctor examined me over and over because he didn’t know what was causing the pain. When it kept getting worse, he had me admitted to a rheumatology ward.

I had no idea what fibromyalgia was

I was examined in hospital, they checked for "tender points" and quickly diagnosed me with fibromyalgia. I had no idea what that was.

I was prescribed painkillers and then discharged. Once I was back home, my orthopedic doctor said that he didn’t know anything about the disease and referred me to a pain management center.

Treatment at the pain management center

The first doctor who treated me there didn’t pay any attention to my symptoms, like the pain in my knees and cervical vertebrae. He kept telling me that I had to get used to the fibromyalgia as it was. And he prescribed me opiates for the pain. But I couldn’t accept that. I felt like I hadn’t been understood. I wasn't happy with his approach. We jointly decided that I would go to a different doctor at the pain management center.

I got on much better with that second doctor. Lots of doctors had treated me like a fake before that. With this pain therapist, I had finally found someone who I felt understood and wanted to help me.

She prescribed me lots of physiotherapy and water aerobics. That really helped me. But I was still taking the opiates, which she didn’t like. She then referred me to a psychosomatic clinic. The aim was for me to stop taking the opiates and cope better with the fibromyalgia. And that worked well.

My life with the pain

I'm never free of pain. I don’t sleep well and am often exhausted. I can’t focus on one thing for a long time because I quickly feel exhausted.

I don’t take any opiates anymore, but I do take other painkillers. I can’t cope without them. You get a lot of advice about these things. But everyone is different and the medication has a different effect on everyone. I also take antidepressants, to give me some energy. But I'm never free of pain.

We're a good team at home and motivate each other. My husband also has chronic pain, and we have a lot of understanding for each other.

My children grew up knowing about the pain their mum was in. I often feel bad about that now. They were often left to their own devices when I was in hospital because my husband had to work, of course. They had to do a lot of things on their own, which has left its mark. The good thing is that they're very independent now as a result.

For a long time, I lived a very isolated life apart from being with my family. Friends and acquaintances often didn’t understand what I was going through. Quite the opposite, really. You can’t see that I’m in pain. People think I look absolutely fine and just don’t want to work. I can often sense that. Because of that, I became really withdrawn and hardly met up with people anymore.

Contacts through the support group

One thing that really helped was my support group. I read about a support group for fibromyalgia by chance in the newspaper. They took me in straight away. The group is like a big family, with lots of understanding for one another.

Joining the support group gave me contact to other people outside of my family again, which was really good for me. We regularly do things together, like relaxation sessions and crafts, organize talks, or go on outings. That all helps to distract from the pain.

I overcame my reservations about psychological treatment

Psychological support was important for me, too. It was recommended to me during my hospital stays. At first I always thought: What’s the point? What am I supposed to talk about? But it all came very naturally. It's great to share everything that's bothering me there. We "clicked" from the get go. That's very important.

My psychologist helped me to find new hobbies or rediscover old ones, like knitting. It’s great fun, even if it really hurts at the time or afterwards. But I’m distracted at first. And it's a good feeling to have made something that I can give to somebody for them to enjoy. I like to paint and do crafts, too – either in the support group or with the kids. That really helps. It doesn’t matter how I feel afterwards.

The right balance between exercise and rest

I need lots of rest. Some doctors say that exercise is important. It’s up to me to find out how much is good for me. I'm not quite there yet. I haven’t found my limit. I often do too much and then I really suffer afterwards. Other people need lots of exercise. A little is often enough for me. I always feel exhausted very quickly.

Water aerobics is really good for me. I don’t notice the pain during it. Even though the pain is there again afterwards, it's a great feeling to have done something. And doing exercise with other people from the group is good, too.

It's important to say “no” and take breaks

At first I didn’t want to accept that both positive and negative stress can make fibromyalgia pain worse. For example, I'm always really happy to see my kids, but sometimes the pain gets so bad that I'm happy to have some peace and quiet again. I sometimes have to lie down and have a rest.

I've learned that I have to take breaks and sometimes also say “no.” In the past, I just had to get on with things in daily life. I just functioned and tried to make everything work for everyone. I found it hard to say no. I still find it hard to tell other people that I can’t manage to do certain things. But I need to take time for myself. I’ve understood and accepted that now. You have to keep working on yourself. Keep trying to find out where your limits are.

I've accepted the disease

I couldn’t accept the at first. I didn’t want it to be true. It must have taken about five years for me to finally accept the disease.

I used to go to the doctor very often. I've lost count of how many doctors I saw. I now know that the pain is a symptom of my disease and that I don’t need to have everything checked out all the time. I have to accept the pain and make the best of a bad situation. But it takes time to realize that.

I found it really important to look into the , to find a support group to share experiences, and talk to my family about things, too.

And it's important to find out what's good for you, personally. Maybe by making a list of when you felt bad and when you felt good. Perhaps keep a kind of diary to make a note of that. I also found it important to accept help. But that's not at all easy to do.

When people used to ask me how I was, I often said everything was fine. Even though nothing was fine at all. In hindsight, that was a mistake. Because other people thought I was fine and then all of a sudden I was off work. They didn't understand what was going on. Nowadays, I would try to speak openly about things from the beginning.

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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Created on May 24, 2022
Next planned update: 2025

Publisher:

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

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