Everything you need to know about living well with fibromyalgia
You may be wondering, what is fibromyalgia? In this guide we will try to provide a fibromyalgia explanation for you, including information on what causes fibromyalgia, how the process of fibromyalgia diagnosis may occur, and fibromyalgia treatments that may be available. We will also explore what it is like for people living with fibromyalgia, and opportunities to find help for the condition.
This guide is not designed to replace any information or advice given to you by your doctors, and is not an alternative to seeking professional medical advice. If you are concerned about any symptoms you may have, or anything you read about here, you should contact your GP.
Fibromyalgia syndrome is a condition that is not very well understood as yet. Fibromyalgia symptoms are varied but usually include chronic pain around the body, muscle stiffness and fatigue (extreme tiredness/exhaustion) which may severely affect a person’s day to day life.
Experts do not yet understand what causes fibromyalgia, but it is a long term condition, that may be linked to abnormal chemical activity within the brain.
There is no cure for fibromyalgia, but there are therapeutic fibromyalgia treatments that can reduce the impact of symptoms on a person’s life.
Fibromyalgia seems to affect people of all ages, but mostly those aged between 30 to 50 years old, and women are much more likely to develop the condition compared to men. It is thought to be more common that statistics report, since many people do not seek medical help, or are misdiagnosed. There may be around 1.5-2 million people in the UK with fibromyalgia.
For more information on the condition, visit the Fibromyalgia Action UK website.
Nobody knows for sure yet what causes fibromyalgia. Current theories suggest that fibromyalgia may be caused by irregular activity within the central nervous system. This is because the pain it causes does not seem to be a result of physical or mechanical problems in the body (e.g. a broken bone, a pulled muscle, inflammation) but instead, seems to be caused by the brain’s management of pain signals. This means that for many people, pain relieving drugs do not have much effect for them and pain cannot be healed.
People with the condition may find it difficult to accept that the causes of fibromyalgia are not yet confirmed. Generally, people like to understand why they are experiencing a healthcare condition. Some people report that the fibromyalgia diagnosis process is also difficult and takes a long time, because there is a lack of understanding of the syndrome in the medical community, for example, GPs.
It is common for a stressful life event to be what triggers fibromyalgia. Lots of people who have the condition report that their fibromyalgia symptoms began when they had an illness, injury, operation, bereavement, relationship breakdown (e.g. divorce), or even after having a baby. Similarly, people report that their fibromyalgia symptoms flare up due to these types of events and experiences.
For more information on what causes fibromyalgia, visit the Arthritis Research UK website.
When speaking of symptoms of fibromyalgia, it is important not to generalise because whilst a few symptoms are common amongst people with the condition, everyone will experience it differently. Here, we cover key symptoms that many people with the condition will experience, and a host of other symptoms that some people report. Fibromyalgia can lead to other health conditions developing, and we discuss these here also. Not every person will experience all of these symptoms.
Generally, fibromyalgia symptoms will affect a person’s life to some degree, and this will be different for each person with the condition. Some people will find they can still go about their daily life, but may have times when fibromyalgia flares up. Others will have constant symptoms that are difficult to manage. Later in this guide, we look at how to live well with fybromalgia.
Symptoms of fibromyalgia include:
• Pain all around the body, which may feel like burning, throbbing, stabbing or shooting pain
• Sensitivity to pain (feeling that even slight touch is really painful)
• Fatigue (exhaustion, excessive/unexplained tiredness)
• Cognitive difficulties e.g. feeling like thought processes are slow, or having memory problems
• Sleep issues i.e. non-restorative sleep (being unable to progress into a state of deep sleep)
• Stiff joints and muscles
• Balance problems i.e. vertigo, dizziness
• Food intolerances
• Sensitivity to heat/cold
• Mood swings, anxiety, depression or other mental health problems
• Digestive problems e.g. irritable bowel syndrome
• Headaches or migraines
People report that their symptoms change over time and fluctuate during different periods. Some symptoms may come and go, or come on for a period of time and then get better before another symptom occurs. It is important to learn what triggers fibromyalgia symptoms for you.
If you are concerned about any of the symptoms you read here, consult your GP. These symptoms are often symptoms of other conditions and may not be caused by fibromyalgia.
For more information on symptoms of fibromyalgia, visit the NHS website.
Some people find that when they present fibromyalgia symptoms to their GP, it takes some time to be diagnosed. Many people are misdiagnosed, because fibromyalgia is not well understood, being only identified and labelled in the 1990s.
Even if a GP suspects the cause may be fibromyalgia, there is no test for the condition. Blood tests, scans and so on cannot prove the condition is present. Your GP may carry out or refer you for testing though, to rule out other conditions first, for example, they may want to ensure you do not have arthritis, multiple sclerosis or chronic fatigue syndrome.
If your GP is unable to find any other reasons that could be the cause of your symptoms, they may decide upon a fibromyalgia diagnosis.
Receiving a diagnosis of fibromyalgia can be difficult to take in. It can help to talk to other people in a similar situation, or those who are living with the condition, to find out first-hand what you may have to deal with. Read our Support for Fibromyalgia section for details about online communities that may help.
There are several conditions that are sometimes mistaken for fibromyalgia, and you can find out more about these here.
There is no cure for fibromyalgia. Fibromyalgia treatments usually focus on trying medications designed to reduce pain or improve mood, as well as therapeutic treatments to ease pain and enhance wellbeing.
Here, we look at the drug treatments for fibromyalgia that some people use to help manage symptoms and why they are not always effective. We also explore physical therapies, psychological support and complementary therapies that may be of interest.
Many people take painkillers for their fibromyalgia symptoms, such as paracetamol, or ibuprofen. Some people find that these help relieve some of their pain, however, they do not work for everybody. Similarly, pain relieving gels that are applied to the skin do not always help, but some people find some temporary relief using these.
Some people are prescribed drugs that help with nerve pain, such as pregabalin, which may help.
Others find that they have symptoms of low mood, anxiety or depression as a result of living with chronic pain.
Some people choose to take antidepressant drugs to help relieve these symptoms, such as:
This sort of fibromyalgia treatment may include physiotherapy and/or occupational therapy.
A physiotherapist may be able to help a person with fibromyalgia to develop a program of exercise to increase their activity levels gradually. Exercise is essential for anyone living with this condition, even though it may be the last thing you feel like doing. Exercise will keep muscles strong, may help improve sleep, and can be excellent for mental health.
A physiotherapist may also be able to advise on posture and mobility issues if your condition is affecting how you get around. Your GP may be able to refer you to a physiotherapy service.
Occupational Therapists are trained to support people with health conditions by finding ways of adapting everyday tasks in all areas of their life, to ensure they can live as independently as possible. If you are finding some aspects of daily living difficult, speak to your local social services department to find out if you are eligible for an Occupational Therapy assessment.
Some people find that using a TENS machine helps relieve their pain – a battery operated device available from many retailers, which sends an electrical current into the body via electrodes that are attached with sticky pads.
It is difficult to live with chronic pain. Similarly, the fatigue caused by fibromyalgia may affect daily life and mood. If you are finding it difficult to manage your fibromyalgia and are experiencing feelings of hopelessness, sadness, anger, anxiety or stress, you may wish to seek support such as counselling or psychotherapy. There are many sources of psychological support and your GP may be able to refer you to a local service. Alternatively, if you wish to seek help privately, you may wish to find a therapist here or contact the mental health charity Mind.
Some people find it difficult to relax when they have chronic pain, and report that mindfulness, a type of meditation, helps them to find a sense of wellbeing amidst their symptoms. Read more about mindfulness here.
There are millions of people in the UK living with chronic pain, and there are pain management classes, techniques, workshops and programs that may be available to you. Read tips for managing pain here. You may also like to explore the Alexander Technique, a program that trains people to improve their posture and movements in order to relieve pain and stress.
Involves insertion of very thin needles into the skin to stimulate nerve endings and release endorphins into the body, for natural pain relief. Read more about acupuncture for fibromyalgia relief here.
Can be undertaken at home and self-taught; this therapy involves using highly concentrated essential oils in massage or as an inhalant, to bring about relaxation and stress relief. Read more about aromatherapy for fibromyalgia relief here.
There is little evidence to show that some of these therapies are effective, particularly homeopathy which has been largely disproven to work. However, some people with fibromyalgia find that treatments such as these do work for them in some way. If you are considering embarking on any complementary therapies, you should discuss with your GP in the first instance.
If you are living with fibromyalgia or know someone who is, this section may help you understand how the condition affects daily life. If you are newly diagnosed, you may be wondering how fibromyalgia will impact your lifestyle. Some people are able to live independently, look after themselves or their loved ones, work and do lots of the activities they enjoy. However, others do find that their fibromyalgia symptoms cause challenges and significant changes to their daily routine, the amount of activity they can do each day, and their sense of wellbeing.
Every person with fibromyalgia will experience it differently, but it is important to remember that you are not alone and there is support available to help you manage your condition. Read our Treatments for Fibromyalgia section for information about medication and other ways to cope with pain, or read on to find out about diet for fibromyalgia, exercise for fibromyalgia and products for fibromyalgia.
It is so difficult to discuss how fibromyalgia will affect a person’s daily life, because the condition affects everybody so differently. Some people feel that their fibromyalgia goes through stages where it flares up and then is in remission – the flare ups may last for varying lengths of time. In between these times they may feel fit and able to do lots of ‘normal’ things, enjoy hobbies and activities, work, do chores, and so on.
Other people experience fibromyalgia symptoms constantly, and find that it affects their daily life more severely. Some people may have mobility problems due to dizziness or balance issues, or find chores and personal care exhausting.
Here, we suggest some fibromyalgia aids that may help with a variety of daily activities, which may have become difficult due to fibromyalgia symptoms. Daily living aids are designed to make tasks such as chores, personal care and mobility easier. At Healthcare Pro, we are experts in supplying daily living aids and below, we suggest which products may help with certain areas of daily life.
If you are unsure what products for fibromyalgia may help suit your needs, please contact the Healthcare Pro Occupational Therapist product advisors by telephone: 0345 121 8111 or email [email protected]. They will be able to talk to you about your needs and will try to find suitable fibromyalgia aids to help you.
PLEASE NOTE: our Expert Advice Service can only give advice about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.
• Take time to relax
• Develop a good bedtime routine to aid sleep
• Avoid over use of screens i.e. phones and tablets (especially before bed time)
• Talk about how you feel, either with family, friends, experts or other people with fibromyalgia – this can help relieve some of the stress that may come with having a long-term condition
• Consider complementary therapies
• Live healthily e.g. stop smoking, exercise and eat well (read on to find out more about exercise for fibromyalgia)
• Make use of the support services available to you e.g. ask for referrals to physiotherapy or occupational therapy
• Seek medical advice and support if you are struggling to manage your symptoms
• Ask for help when you need it e.g. with chores, childcare, etc.
If you are given a fibromyalgia diagnosis, you are likely to be advised to undertake exercise. You may feel as though this just is not possible – fibromyalgia symptoms such as pain and fatigue may lead you to feeling unable to move around, let alone exercise. However, avoiding exercise may create a vicious cycle, causing more fatigue and pain due to being inactive.
Being as active as you can will help avoid further problems developing, for example, weak or wasted muscles and arthritis or joint problems. Exercise will help keep your heart healthy and will improve your overall mood by releasing feel-good endorphins. People who undertake exercise do report that their fibromyalgia symptoms are more manageable, less severe and that they sleep better as a result. Fibromyalgia exercises could include walking, cycling, swimming, gentle weight lifting, toning with resistance bands, or anything that can be started off at a low pace and gradually built up as the body gets stronger and abler.
Professional advice suggests you should build up your activity levels gradually, to avoid over-exerting yourself or causing additional pain from overworked muscles.
Contact your GP to find out if you can be referred to the NHS physiotherapy service. Find out more about exercise for fibromyalgia here.
Healthy eating for fibromyalgia patients is important to help maintain a healthy weight and general good health. Eating the wrong types of foods, e.g. too much sugar, fat, salt, and so on, can lead to lower immunity and digestive problems, which cause further discomfort and illness in the body.
Some people believe that certain foods and drinks trigger their fibromyalgia, such as aspartame (a sweetener), caffeine, sugar, dairy and MSG (a flavour enhancer found in soy sauce, savoury snacks, etc). There is little evidence currently to support that these foods actually do have an effect on the condition, but if you feel that consuming certain things negatively affects you, speak to your GP for advice.
Some people choose to take fibromyalgia supplements such as vitamin d, fish oil and magnesium, but there is little evidence to suggest these actually have an effect on symptoms. If you are considering taking any supplements for fibromyalgia, talk to your GP first.
You may be wondering; can I still work with fibromyalgia? There is no definitive answer to this question, because each person with the condition experiences it differently. Lots of people with fibromyalgia do go to work or are able to continue the work they have always done, whilst others are not able to work.
This may have an effect on your sense of identity and wellbeing, and have lots of implications for your finances. If this is the case, it may be beneficial to talk to a charity that specialises in supporting people who live with chronic pain, such as Pain Concern.
If you are employed and have fibromyalgia, it may be beneficial to share your diagnosis with your employers. You may need time off, additional breaks, or other adjustments for when your fibromyalgia symptoms are difficult to deal with.
We hope this guide has given a helpful fibromyalgia explanation. Fibromyalgia is a complex condition that is not well understood yet, with the causes of fibromyalgia still unclear. Therefore, it can feel frustrating for people with the condition, who want to understand it better and find ways to improve their experience of the condition. We hope this guide has helped provide some answers to your questions. This guide does not replace medical advice in any way, so please contact your GP or specialist to discuss any queries or concerns you have.
If you are looking for further sources of fibromyalgia help, see our list below. Some people find it helps to discuss their experiences of living with fibromyalgia with people who are also affected by it. We provide a list of online chat rooms and forums where you can meet others in a similar situation to yourself. We also provide a list of other fibromyalgia support services and sources of online information for you to browse.
Action on Pain – a UK charity campaigning for people living with chronic pain, which provides a helpline and suggestions of ways to deal with pain
Away with Pain – a UK charity supporting people who live with painful health conditions such as fibromyalgia, which provides a wealth of information about pain and how to manage it, including a pain tool kit and personal stories
Fibromyalgia Action UK – a UK based charity supporting people affected by fibromyalgia through online information about the condition, as well as providing a helpline, benefit support, online forum, and fundraising activities
Fibromyalgia Syndrome – a resource website featuring many articles about lots of aspects of living with fibromyalgia such as in depth information about symptoms, as well as case studies
NHS – source of official medical information in the UK, including information on fibromyalgia causes, symptoms and treatments
Pain Concern – a UK charity supporting people in pain and providing online information about living with pain, benefits, alternative therapies, how pain affects relationships, and much more including a helpline
UK Fibromyalgia – lots of online information about fibromyalgia as well as a forum, Facebook group and magazine
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of fibromyalgia as straightforward as possible.
A drug used to treat fibromyalgia and arthritic conditions, which helps relax muscles
The essential set of organs and processes in the body, including brain and spinal cord, which sends messages through nerves to activate body parts
Selective serotonin reuptake inhibitor (SSRI) medication used to treat anxiety, depression and other low mood disorders
Related to mental processes e.g. remembering, thinking, reading, understanding
A type of serotonin-norepinephrine reuptake inhibitor (SNRI) medication used to treat depression and other mental health disorders, which can also help reduce pain in some medical conditions
Chemicals released naturally in the body that produce a pain-relief and feel-good effect
A bodily reaction to certain foods or drinks, or ingredients in them, which may cause digestive upset or other symptoms
A condition causing digestive problems and symptoms such as cramps, pain, bloating, wind and constipation
A drug used to treat anxiety, epilepsy and nerve pain, which is sometimes given to people with fibromyalgia
A symptom or sensation of feeling dizzy, disorientated, or unbalanced