Fibromyalgia (also known as fibromyalgia syndrome or FMS) is a chronic condition that causes pain in various parts of the body. The pain may be felt in the skin, muscles and joints. Other typical symptoms include sleep problems, exhaustion and trouble concentrating.
Although fibromyalgia has been recognized as an illness for 30 years now, people who have it are still sometimes made to feel like it’s all in their head. Part of the reason for this is that not many people are aware of fibromyalgia, and healthy people find it hard to understand. This often makes it even harder to live with the condition.
Sometimes people who have fibromyalgia are told that the pain can’t be treated. But research has shown that there are indeed treatments that can relieve the typical symptoms. And many people learn to cope better with the pain over time. They find out what activities they can handle – and when to take things easier.
It’s good to know that fibromyalgia isn’t a dangerous condition. It doesn’t affect people’s organs or life expectancy.
The main symptom of fibromyalgia is chronic (long-term) deep muscle pain in different areas of the body. The pain often feels like a pulled muscle or bad muscle ache. It can be unpredictable and vary from one day to the next – for instance, in terms of how severe it is or where in the body it occurs. This makes it difficult for people with fibromyalgia to make plans, from everyday activities such as shopping, to trips or vacations. In some people the symptoms get better for a few hours a day, and they can get things done during that time.
Further typical symptoms of fibromyalgia include poor, restless sleep, tiredness and exhaustion. Many people sometimes have difficulties thinking clearly, remembering things, finding words or concentrating. This is known as “fibro fog” or “brain fog.”
Nowadays we know that fibromyalgia has something to do with the way that pain messages are processed in the brain. People with this condition start feeling pain at lower thresholds. In other words, sensations that would feel normal in other people feel painful in those with fibromyalgia. Scientists believe that several factors are responsible for the development of fibromyalgia. It is thought to be caused by changes in the way that pain messages are processed, which are triggered by a combination of genetic factors and physical or psychological stress.
Fibromyalgia is often referred to as “soft tissue rheumatism.” This name is misleading, though, because the pain doesn’t come from soft tissue (e.g. muscles) and it isn’t a rheumatic disease. What’s more, “soft tissue rheumatism” is used as an umbrella term for a number of different diseases, and isn’t a disease of its own.
According to a representative study, about 2% of all adults in Germany have fibromyalgia. This disease is typically diagnosed between the ages of 40 and 60. But children, teenagers and young adults sometimes have fibromyalgia too. It is more common in women than it is in men.
Fibromyalgia usually develops over a long period of time. A lot of people have general pain or other pain disorders for a long time before being diagnosed with fibromyalgia. These include things like IBS (irritable bowel syndrome), back pain, neck pain, jaw pain and headaches. Women may have bad period pain, endometriosis or a chronic type of bladder infection (interstitial cystitis). Some people already often had headaches, stomach ache, muscle ache or joint pain in their childhood and puberty.
The type and severity of symptoms vary a lot. Phases of severe pain may be followed by almost symptom-free phases.
In a large study that lasted longer than ten years, the symptoms improved somewhat in 25% of people with the disease. 10% even reported a big improvement. But in most people the symptoms didn’t change much over the long term.
Fibromyalgia can be very distressing and affect many areas of life. Because of the pain and exhaustion, it can be very hard to do simple activities such as tidying up or going shopping. Even usually enjoyable activities with family and friends may become difficult.
Some people start feeling guilty because they can’t do as much as others can. They feel like they can no longer fulfill their duties at home or at work. They’re also sometimes accused of just making excuses. This can make them feel even more worthless than before. One way to try to prevent or clear up misconceptions is by being open about the disease and explain it to others.
It often takes a number of years before fibromyalgia is diagnosed. One reason for this is that the pain starts gradually or may only occur in one part of the body, so doctors often think it’s something else at first. Another reason is that many doctors hesitate to give the diagnosis because it can’t be confirmed with laboratory tests or x-rays. This can lead to the wrong diagnosis and a lack of understanding. Those affected often feel like they aren’t being taken seriously, or like their doctor thinks it’s all in their head. In many cases, fibromyalgia is first diagnosed by a rheumatologist or pain management specialist.
In order to find out whether someone has fibromyalgia, the doctor and patient have an in-depth talk and the doctor gives the patient a physical examination. A fibromyalgia symptom checklist can help to describe the symptoms. You might have fibromyalgia if at least 7 out of 19 specific areas of your body have been painful in the past three months. These include the chest and belly area, the back, jaw, shoulders, upper arms and forearms, hips, thighs and calves – on both sides of the body.
Possible painful areas in fibromyalgia
Other symptoms must be present too, such as the following:
- Difficulty concentrating
- Feeling tired in the morning
- Stomach pain or cramps
To be a sign of fibromyalgia, these extra symptoms have to be severe enough and occur alongside the pain for at least three months.
Other medical problems that may cause the same symptoms have to be ruled out too.
Sometimes the diagnosis is made on the basis of something known as “tender points.” These are certain areas of the body that are sensitive to pressure. But this examination is very subjective, and less reliable in men than in women.
To rule out other illnesses that have similar symptoms, medical societies recommend that the doctor has an in-depth talk with the patient about their medical history, does various blood tests and gives them a physical examination. Medical conditions that can be ruled out in this way include rheumatoid arthritis, an underactive thyroid gland, muscle disease and psychological problems. It’s also important to talk to the doctor about any medications you are taking. In rare cases, some medications may cause muscle pain. Examples include proton pump inhibitors and statins.
Further tests are only needed if there is good reason to believe that someone has a certain illness, or if other symptoms arise. A lot of people who have fibromyalgia are examined too many times – either because doctors don’t think of fibromyalgia as a potential cause, or because they themselves believe that their symptoms must have a different, “real” cause. This may lead to unnecessary treatments if the doctor finds a supposed cause which actually has nothing to do with the symptoms. For instance, people who have fibromyalgia have much more back surgery than other people do.
Many people who have fibromyalgia avoid physical activity for fear of making the pain worse or overdoing it. But research has shown that exercise and gentle sports (e.g. cycling or Nordic walking) can improve their wellbeing, strengthen their body and relieve the pain somewhat. So they are an important part of the treatment.
Certain medications have been proven to greatly reduce fibromyalgia pain in some people. These include amitriptyline, duloxetine, milnacipran and pregabalin. They all influence certain chemical messengers that also affect how we feel pain. These drugs were originally developed for the treatment of depression or epilepsy. When used in the treatment of fibromyalgia, though, they aren’t used for their antidepressant or anti-epileptic effects. Conventional painkillers such as diclofenac, ibuprofen or acetaminophen (paracetamol) generally aren’t recommended for the treatment of fibromyalgia.
Many people with fibromyalgia find certain types of physical therapy to be pleasant, especially resting and/or moving in warm water. Some also say that going to the sauna or having gentle massages help.
Multimodal pain management can be a good idea, particularly if the fibromyalgia pain is strong. This approach combines movement, relaxation and pain management techniques used in cognitive behavioral therapy (CBT). CBT and other psychological treatments can help people to cope better with pain and other symptoms in everyday life. Medication can be used as well.
If someone also has other illnesses such as arthritis or psychological problems such as depression, it’s important to treat those conditions too.
Different people will find different things helpful, and cope very differently with the symptoms. Finding your own strategy to deal with the illness over time is perhaps one of the most important things for your wellbeing. This involves learning to cope better with the symptoms rather than using your energy trying to fight the illness. For instance, it’s helpful to
- have a think about what’s really important in your daily life,
- not try to be perfect and
- recognize and respect your limitations.
This may mean giving yourself more time to do strenuous activities, and taking regular breaks. You can also try out various relaxation and stress management techniques such as autogenic training or progressive muscle relaxation.
Many things are still possible, despite having fibromyalgia. It’s important not to stop doing activities that you enjoy. This also applies to social activities and contacts. Last but not least, it can be helpful to talk with other people who have similar problems – for instance, in a support group.
When people are ill or need medical advice, they usually go to see their family doctor first. Read about how to find the right doctor, how to prepare for the appointment and what to remember.
There are many sources of support for people with fibromyalgia, including self-help groups and information centers. But many of these facilities are organized quite differently. Our list can help you find and make use of local services in Germany.
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