I gave my disease a name: Eddie

Photo of two women filling out forms

Greta, 57 years old

“I went from doctor to doctor, always hoping that someone might think of a way to help me. I tried out lots of things, including things I had to pay for myself. I clutched at every straw.”

I was quite a sickly child, I often had fever and pains. My mum was always very worried about me.

I often had to go to hospital, for instance to have my appendix and my tonsils removed. I already decided I wanted to be a nurse when I was little. I chased that goal, and reached it. But I was often ill when I was doing my training and noticed that I couldn’t take as much strain as the others. I didn’t really give it too much thought, though, and just kept going somehow. I really enjoyed my job. I got married and had kids.

I could take less and less strain

But over time I could take less and less strain, both at work and at home. About twelve years ago I had a slipped disc and needed surgery. But the pain didn’t go away after the operation.

I tried everything possible, above all painkillers. I really wanted to work. I had taken on a management position and had very long working days with lots of responsibilities. By then I also had pain in my hands, feet and knees and a “hammering” feeling in my whole body. Some of my work duties were getting harder and harder to do because of that.

There had to be something else wrong

After the operation, I realized that it had to be something else. The pain was everywhere and simply didn’t go away. It was strange. But the doctors only focused on my back at first. I went to a rehabilitation center but I felt worse and worse with each day. My whole body was in pain.

My pain is like muscle ache that never goes away. I also have a tight feeling, with tense muscles. I sometimes have this stabbing pain, too, as if somebody has rammed a knife into my flesh. And sometimes I also have a kind of burning sensation in my feet and ankles, and it feels a bit like I have a club foot. That really hurts a lot. My feet are sometimes a little bit swollen, but that goes away again.

The breakdown

About eight years ago I had a breakdown. I simply couldn’t go on. I went to my family doctor. He suspected rheumatism, but couldn’t find any other signs. I then had myself referred to a hospital. I really wanted to know what was wrong with me. After two weeks they diagnosed me with fibromyalgia. It was a huge relief. There really was something there, I wasn’t just “losing it.”

The doctor gave me an information booklet and told me that I wasn’t going to die from this disease. I no longer had to worry about that. But at that moment I also realized that I was going to grow old with all of this pain because nothing really helps in the long term.

Desperate search for help

I went from doctor to doctor, always hoping that someone might think of a way to help me. I tried out lots of things again, including things I had to pay for myself. I clutched at every straw.

It’s crazy how many miracle cures are offered on the internet and elsewhere. You always hope that something might help. At the same time, it's difficult to accept help and to admit that there are lots of things you can no longer do. People with fibromyalgia are often perfectionists. That doesn’t make it any easier.

I ended up going to see a pain management specialist. She prescribed me opiates, which did help. I was happy and went to work. But the effect only lasted for about three or four weeks. Then I had to increase the dose. That carried on for quite a while, increasing the dose time and again.

Dependent on opiates

While I was having treatment at a rehabilitation center again, they asked after a few days if I would like to extend my stay by a number of weeks and switch to the withdrawal clinic. I had become dependent on the opiates. That shocked me. I never thought I could become dependent on the tablets. They had been prescribed for me, after all. I refused to believe it at first, but then I agreed and had treatment there for three months. I learned an awful lot during that time. I went home absolutely determined to never take opiates again.

I started working again, but after four months I was back in the same loop. I was irritable and thin-skinned, and had become a different person somehow. I had started taking opiates again, too. I thought I had everything under control – but I didn’t. I went for withdrawal treatment again. I then finally realized that opiates didn’t help with my fibromyalgia. Quite the opposite.

Retirement was the right path for me

I decided to apply for retirement while I was still at the clinic for withdrawal treatment. The strain was too much for me. I stopped working, but at the same time started getting active in support groups.

Fighting for recognition can be quite draining – in public, at work, with health insurance providers. I still wanted to be financially independent, like I had been all my life. My husband insisted that everything was taken care of and I needn’t worry. But I was very relieved when I got confirmation of my pension.

I still miss my work, though. My husband also took early retirement. Our dream of traveling more when we get older is no longer possible. I find it difficult to sit down for longer periods of time and I have trouble getting used to new surroundings too.

It took time for me to find my path

I have now found my path. There are medications that help me in the short term, but in the long term I have to get active myself. I need distraction, to get outside and move about. It's important to find out what helps you. I find it helpful to keep a diary.

For a long time, I was scared to do any exercise when I was in pain. I thought that exercise might make the pain worse or harm me. It took me a long time to realize that exercise improves my overall fitness and that I have to keep moving. It was an eye-opener for me to realize that it's okay to exercise despite the pain.

At first I kept telling myself, if I feel good this evening and I then go out dancing or whatever, I won’t feel well the next day. Over time, I started telling myself it didn’t matter how I would feel the next day. I live in the here and now and it's great to have fun now. If I don’t allow myself that because I'm scared of what's to come, I won’t enjoy life anymore.

Exercise and distraction are important

I try to do at least 20 to 30 minutes of exercise every day. I go to water aerobics twice a week, and go Nordic walking and cycling when the weather allows.

I'm always really proud of myself after doing sports! I've learned that avoiding exercise makes the pain worse. Exercising doesn't make the pain go away, but it makes me feel better, more agile and gives me a sense of achievement.

I now also know that distraction helps me cope with the pain. I had to accept that nobody can make the pain go away for longer periods of time, and that I have to cope with it myself.

Having a body in pain is all I have known for years. If I'm distracted, the pain is still there but I don’t think about it anymore. For example, I taught myself to sew and like to make small make-up bags and wash bags. I don’t feel any pain when I’m sewing.

It's not easy to find a good doctor

There's no one-size-fits-all strategy for people who have fibromyalgia, which also makes it difficult for doctors. The symptoms can vary quite a lot from person to person. And a medication that helps one person often has no effect in other people.

It's very important to find a good doctor. That's not easy, but you shouldn’t give up. Sometimes you might have to travel a bit further, but there are good doctors out there! The problem is that you can't "prove" you have fibromyalgia. There are no lab results or anything. That's why it's so important to thoroughly test for other diseases and rule them out first.

Lack of recognition

People with fibromyalgia always struggle with the fact that they don’t look unwell. Other people can be quick to make accusations, like that you're unreliable. It can often be difficult to stick to arrangements because you're physically or mentally unwell. Your family and friends have to be very understanding.

That's difficult in the working world, too: You often don't know how you’ll be feeling the next day. It's often difficult to stick to regular working hours. Flexible working hours and corresponding duties would be great for people with fibromyalgia. But employers are often reluctant to adapt working conditions.

Take care of yourself

I think it's important to take your problems seriously and be honest with yourself. A couple of weeks ago I got to a stage where I just couldn’t go on. It's important to notice when you've reached that point and quickly find help.

I then went to hospital for 14 days. Multimodal pain therapy often helps me. I find warmth particularly good. At the clinic they call it hyperthermia therapy. I then take baths in really big therapeutic tubs. Mudpacks and yoga are also very good. Other people respond better to treatment with cold rather than warmth. So some clinics have cold chambers. None of that makes the disease go away, but it can help for a while.

I think it’s important to take the time to exercise but also to relax. Breathing exercises, enjoyment-focused therapy, mindfulness training... it all helps me. Cycling, running and water aerobics are also good.

One of my exercises involves me telling myself that I'm in pain. And then just leaving that statement as it is. If I start to think about how bad the pain is at the moment and where it's coming from, it takes center stage in my life and limits what I do. I don’t want that to happen. It's also important to realize what's too much for me and what I can’t manage anymore.

We often think other people are putting pressure on us. But very often it's us who are putting pressure on ourselves. It takes time to realize that.

My disease has a name

I gave my disease a name: Eddie. Eddie is always with me. I often say “Good morning” to Eddie before greeting my husband. And Eddie always thinks we should stay in bed and not get up. Then I say: No, you can stay in bed. I’m getting up without you. He then normally drags himself out of bed, too. But I don’t let Eddie walk ahead of me anymore, like I did for a long time. He is either by my side or behind me.

Sharing, understanding and laughter in the support group

The support group has really helped me. I never have to explain myself there. I feel understood and can share experiences with other people there, including useful tips for everyday life. We also have a good laugh.

I believe that every illness also offers opportunities. If I hadn’t become ill, I would never have met so many nice people at the support group.

We often expect medicine and science to find something to help. That would be nice – but I'm also responsible for myself. It is what it is now, and I have to make the most of it.

It was important for me to think about what I can change in my life to manage better, both in my private life and at work. It's really difficult to take a very realistic and honest look at your own life. Some days, I end up fighting with myself and my doubts and uncertainties.

I have clear strategies in my mind. But I don’t always manage to put them into practice. That's normal and absolutely okay. It's important to never give up, even on the not-quite-so-good days. You should always allow yourself a “bad day” every now and then. But I think it’s important to then be active again the next day.

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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