Talking to health care professionals about fibromyalgia
We asked people about their interactions and discussions with health care professionals. Views were mixed. Some people felt believed, listened to and taken seriously. They...
Studies tell us that physical and talking therapies are often a better way of managing fibromyalgia than medication. Pain can affect mood and behaviour, especially if the pain has been there for a long time. Psychological therapies look at how pain affects our thoughts and habits, and how our emotions can affect pain. This includes cognitive behavioural therapy (CBT), a form of talking therapy, that aims to reduce the often overwhelming effects of problems such as pain.
Keeping active is an important part of treatment for fibromyalgia and can help relieve pain, as well as prevent other health problems. Physical therapies to help this include physiotherapy and occupational therapy. Physiotherapy aims to help people to stay active and independent. Helpful exercise for people with fibromyalgia includes a combination of aerobic exercise and movements that improve flexibility and strength. Exercise also improves fatigue. Occupational therapy helps people to manage everyday activities around their fibromyalgia, and suggest new ways to get things done.
Relaxation techniques can be just as important as exercise. Good-quality sleep also helps with tiredness and fatigue, and can improve pain. Some people with fibromyalgia find that complementary treatments help their symptoms.
Pain clinics bring together a range of professionals to provide specific treatments or rehabilitation therapies that reduce the effects of fibromyalgia. Pain management programmes can help people to manage pain better and reduce its impact on their life.
In addition to taking various medications (see Medications for fibromyalgia), most of the people we spoke to had tried physical and talking therapies to help with their symptoms of fibromyalgia. These included physiotherapy, hydrotherapy, CBT and other types of therapy/counselling (see also Alternative and complementary therapies). Some accessed these via the NHS, whereas others paid privately.
People talked about being referred to a pain clinic (which offers a mixture of physical and talking therapies), and also being referred to an NHS physiotherapist or paying privately to see one. Others talked about being referred for hydrotherapy. Some people like Lynn Ann struggled to get a physiotherapy appointment through self-referral and found the system frustrating.
Views were mixed about physical therapies. Some people reported good experiences and felt that hydrotherapy, seeing a physiotherapist and learning about stretching exercises at the pain clinic helped a lot. Others sometimes found therapies like physiotherapy difficult or painful. People often commented on the importance of the person they were being referred to, whether for physical or talking therapy, actually knowing something about fibromyalgia.
People talked about being referred to a range of professionals for talking therapy, psychiatrists, psychologists, other kinds of counsellors/therapists, mental health specialist nurses and occupational therapists, and also support from their GP to talk about their mental health. Some specialist staff were located within pain clinics.
People sometimes described a difficult process of trying to find the right person to talk to, being passed from one professional to another, having to wait a long time, and then sometimes being told they were not in the right place or there was nothing/nothing further they could do for them.
People were concerned that there seems to be limited funding for talking therapies on the NHS, leading both to long waits and limited amounts of sessions once you have accessed the service.
Views were mixed about talking therapies. Some, like Aleysha, Rachel and Lynn Ann found them useful and Michael could see their potential for helping people with fibromyalgia. Others felt less positive about therapies like CBT. Catherine was offered CBT for her fibromyalgia. However, she strongly believes that talking about her pain is not going to be particularly helpful for her because ‘I know I’m in pain, I don’t need anyone to confirm that.’
People felt the most useful advice they could give to others was to learn what works for you and listen to your body.
We asked people about their interactions and discussions with health care professionals. Views were mixed. Some people felt believed, listened to and taken seriously. They...
There are a number of treatments and therapies to manage the symptoms of fibromyalgia, such as pain, sleep problems or depression. This may include drug...