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Maybe you’re feeling a bit lost or want to know more about the condition and what it might mean for you. Here’s some useful information to get you started. Navigating life with fibromyalgia can be challenging, especially for those who have recently been diagnosed or are seeking more information. This page aims to offer guidance on understanding the condition, managing symptoms, and accessing support.
Whether you're looking for insights, mental health strategies, benefits advice, or community connections, you'll find valuable information to help you. Our aim is to provide clarity, support, and reliable resources so that individuals with fibromyalgia can make informed decisions and feel empowered in their journey.
Fibromyalgia
Fibromyalgia is a chronic condition that is often described in terms of the pain we feel. It has 4 core symptoms:
- Widespread pain - pain all over the body.
- Profound fatigue - feeling as if someone has pulled the plug.
- Fibro Fog / Cognitive issues - struggling for words or misjudging surroundings.
- Non-Refreshing Sleep - waking up feeling as if you haven't slept.
Not everyone is affected in the same way or to the same degree. Some can work full-time, while others have restricted mobility using wheelchairs or crutches.
Fibromyalgia is a common illness—more prevalent than rheumatoid arthritis and often more painful. The study Prevalence of Fibromyalgia placed FM prevalence at between 2.9% and 4.7%.
The name fibromyalgia comes from fibro (fibrous tissues), my (muscles), and algia (pain). You can find out about the history of the condition here.
More information on fibromyalgia can be found here. Details on our services can be found on the Service status page.
Mental Health
We know that any long term physical health condition can have an effect on our mental health and wellbeing.
Key aspects include:
- Accessing therapy and counselling services
- Mindfulness and stress management techniques
- Community support and peer networks
Check out these links for further support.
Benefits
People with fibromyalgia may be eligible for various benefits, including:
- Personal Independence Payment (PIP)
- Employment and Support Allowance (ESA)
- Universal Credit
- Carer’s Allowance
Support and advice are available to help individuals navigate the benefits system. You can find out more information here.
Employment
We have a booklet for employers and for employees that can help inform and navigate some of the issues that affect people with fibromyalgia. This can involve:
- Reasonable adjustments
- Informing managers and team of condition
- Illness and absences
Support and advice are available to help individuals with employment issues from ourselves and others. More info here.
Young People with fibro
Dealing with fibromyalgia at school or university presents its own challenges. Our booklet can help but there are other resources that can support young people.
You can find more resources here
Places to talk
Fibromyalgia plays a large part in our lives and can affect many things. Reaching out to our online communities or helplines and talking to people with fibromyalgia can help. But, there are other resources you can use if you need to have a chat. Some are specific to a particular group or age.
- The Silver Line helpline run by AGE UK is a free confidential telephone service for older people. They provide friendship, conversation and support 24 hours a day, 7 days a week. (for anyone aged over 55)
- Scope's helpline provides free, independent and impartial advice and support on issues that matter to disabled people and their families.
- ChildLine is open 24/7 with counsellors willing to listen and support anyone under 19 about anything you would like to talk about.
- Samaritans are there if you need someone to talk to whatever you are going through. They offer phone, text and other options to have a chat.
Support Resources
You can find out more about our helplines and support groups here including any notice due to holidays or closures.
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Mental health
Managing your mental health can be difficult when you are also trying to cope with a chronic pain condition. If you feel that your mood is low, or you are struggling, it is vital that you reach out and talk to someone. That could be your GP, a family member, a friend, or someone you trust.
You may wish to consider the other sources of help that we have listed below.
Urgent Help
In the case of a life-threatening emergency, please call 999 or go to your nearest Accident and Emergency department.
NHS 111
You can contact NHS 111 at any time and select option 2 for urgent mental health support.
Lifeline Helpline
Call 0808 808 8000 (service available across Northern Ireland, open 24 hours)
Hub of Hope
Search for urgent and crisis support services on the Hub of Hope.
Samaritans
Call 116 123 (open 24 hours). Emotional support for anyone struggling to cope. You can also text 07725 90 90 90
General resources for supporting mental health
Mind: A mental health charity providing advice and support to anyone experiencing a mental health problem.
Samaritans: A 24/7 helpline offering emotional support to anyone in distress.
NHS Mental Health Services: The National Health Service provides a range of mental health services, including talking therapies and crisis support.
Shout: A free, confidential text service for anyone in crisis. Text "SHOUT" to 85258 to connect with a trained crisis volunteer.
Rethink Mental Illness: A charity that offers support, advice, and information for people affected by mental illness.
National Suicide Prevention Helpline: A helpline providing support for anyone in emotional distress or suicidal crisis.
Anxiety UK: A charity that provides support for individuals experiencing anxiety disorders.
Resources for supporting young people's mental health
YoungMinds: A charity focused on supporting young people’s mental health through various resources and advocacy.
The Mix: A support service for young people under 25, offering advice and support on various issues, including mental health.
Childline: A free, confidential service for children and young people in the UK, providing support and advice on a range of issues, including mental health.
Support Resources
You can find out more about our helplines and support groups here including any notice due to holidays or closures.
Benefits
Getting Started
The benefits' system is complex, and the rules often change, so even if you’ve looked into it before, it might be worth checking again. And if you have been receiving benefits for a while, it can be beneficial to carry out a benefits check to see if you are entitled to anything that you are not currently receiving.
- Some benefits are affected by earnings, other types of income and the amount of savings you (and sometimes your partner) have.
- Check regularly to see if you’re claiming everything you’re entitled to, as benefits can change.
- A claimant's age can alter your entitlement, so check when you, your partner or your children turn 16, 18, or reach State Pension age.
- If your circumstances change, your local Citizens Advice can help check what you're entitled to, or check out the links to benefits calculators below.
- Many benefits overlap and some are a gateway to others, so if you receive one, there may be others that you can't get.
- If your symptoms get worse or your ability to meet the descriptors change, then it's worth arranging a benefits check.
- It's worth checking how the benefit cap might affect you. It's a limit on the total amount of benefit that most people can get between 16 and State Pension age.
- The rules about some benefits may vary between England, Scotland, Wales, and Northern Ireland.
- When you’re looking into benefits that you might be able to claim because of your fibromyalgia, a benefits' adviser can help make sure you check other benefits too. This could include things like help with Council Tax, National Insurance Credits, child benefit (if you have children), or, if you’re the right age, the State Pension and pension credits.
Types of Benefits
Descriptors and not your illness
Benefits applications are not about what conditions you have or how bad you feel. They are focussed on your ability to perform certain tasks.
These are called the descriptors, and there are a couple of examples below from PIP.
- Preparing food - Can you prepare and cook a simple meal unaided.
- Taking nutrition - Needs prompting to be able to take nutrition.
- Washing and bathing - Needs to use an aid or appliance to be able to wash or bathe.
- Dressing and undressing - Needs assistance to be able to dress or undress their upper body.
- Making budgeting decisions - Needs prompting or assistance to be able to make complex budgeting decisions.
More information on the descriptors can be found on Benefits and Works website.
Calculators
You can use an independent, free and anonymous benefits' calculator to check what you could be entitled to.
This will give you an estimate of the benefits you can get, how much you may receive, how they can be affected by the hours you work, and how they may be affected if your circumstances change.
Please find the calculators below:
Further support
Getting help with your benefits' application, or going to a tribunal, is something we recommend as the benefits system is complex and changing all the time.
It can also be stressful, and having help makes it more manageable and improves your chances of a positive outcome.
- Benefits and Works
- Citizens Advice - National organisation that may be able to provide local advocacy and representation.
- Scope UK
- Shelter - Advice about money and benefits from a housing perspective.
Support Resources
You can find out more about our helplines and support groups here including any notice due to holidays or closures.
Employment
Employment Support Resources
You may be concerned about how fibromyalgia may affect your work either now or in the future…we’ve got handy information booklets for both employees and their employers that give an overview of working whilst living with fibromyalgia.
Fibromyalgia can impact your employment in a number of ways and at different stages. Work can have benefits beyond the financial aspect. Research has shown that people who are able to work are more likely to have better self-esteem, which can reduce levels of depression, pain, and isolation.
Our employment booklets can be found on our publications page. They provide support for employees and also for employers so that they can support their employees with aspects such as reasonable adjustments.
This page provides some information from these booklets and links to other resources that could be of help. Fibromyalgia can impact your employment in a number of ways and at different stages. Work can have benefits beyond the financial apsect. Research has shown that people who are able to work are more likely to have better self-esteem which can reduce levels of depression, pain and isolation.
Our Booklets
The aim of our employment guides is to provide those with fibromyalgia with the basic information they need to understand their rights in employment, plus suggestions how to manage their fibromyalgia whilst working.
They are also designed to help employers know what they can do to assist their employees who have fibromyalgia. They provide information on how to help yourself or where to get further support.
Deciding when to tell your employer can also be an important decision, the booklets provide help with this.
How can it affect my employment
Fibromyalgia affects everyone differently. Some people are more severely impacted than others. Due to the fluctuating nature of Fibromyalgia, the symptoms can vary day-to-day. This can make it difficult to maintain a consistent level of working.
A lack of understanding from colleagues can also reduce enjoyment from working or introduce additional hurdles.
Reasonable adjustments
Adjustments should be considered with you involved and will vary depending on your requirements, the size of your employer, and the role that you do. They can include:
- Allowing longer breaks so you can manage your tasks more flexibly.
- Adjusting working times to enable an easier commute
- Using stretches and changes to posture as well as aids (e.g. memory cushion) to make your working environment more comfortable for you.
- Stress reduction techniques such as memory aids like notepads, voice recorders or whiteboards.
- An ergonomic seat, mouse, or keyboard.
- Driving aids such as specialist cushion or steering adaptations.
There are more examples in our booklets.
Further links
You may require further support with issues that occur within the workplace, or you may want help in applying for jobs.
Below are some links that may be of help.
- ACAS - ACAS gives employees and employers free, impartial advice on workplace rights, rules and best practice.
- Access to Work – Government support for disabled individuals in the workplace.
- Scope Employment Services – Employment support for disabled people.
- National Careers Service - Job support for individuals with disabilities.
- Citizens Advice Bureau - Help and information if you have a problem at work.
- Government Advice – Employment rights, discrimination, and benefit advice
Support Resources
You can find out more about our helplines and support groups here including any notice due to holidays or closures.
Young people with fibromyalgia
Fibromyalgia
Living with fibromyalgia can be particularly challenging, especially for young individuals. It often affects your ability to spend time with friends and family, and it can significantly impact your education and hobbies. It may feel as though no one truly understands what it's like to live with this condition.
Stephanie: “ I use heat patches on my back especially during the winter. I have found physiotherapy, hydrotherapy and a pain management course helpful. I would recommend the pain management course to anyone as it covers everything. I do take some medicines, painkillers and tablets to help me sleep, but I don’t like taking medicine as a long-term solution.
My best coping strategy is distraction, whether it’s listening to music or talking to family and friends or going out and just getting on with things.”
What is fibro like for young people?
The symptoms are the same as adults, but it can be more difficult to be diagnosed. It feels like you are sore all over, as if you have run a marathon the day before, or you have the flu. Your limbs ache and sometimes feel too heavy to move easily.
You can also feel very tired and have difficulty sleeping at night. Your head can become muzzy, making it difficult to think clearly and remember things.
Symptoms can come and go over time and vary from person to person. Sometimes it feels like the pain is moving around your body from one area to another.
Reuben: “I find a thermal heat pad and an infrasound vibrator the most effective treatment. I also take vitamin supplements and herbal remedies. I haven’t found medication or alternative therapies very useful.”
What causes fibro?
The exact cause of fibromyalgia is still unknown. However, people with fibromyalgia feel a lot more pain than other people. This is because pain signals in fibromyalgia are amplified. It is as though someone has turned the switch to full volume.
So the nervous system, that carries pain signals up the spinal cord to the brain, is constantly set on maximum. Pain or touch, that would not bother other people, becomes painful and troublesome to a person with fibromyalgia.
It is like being as sensitive as the princess in the fairy tale The Princess and the Pea who could feel a hard pea concealed under many mattresses.
Carla: “I use heat. I have a hot bath or use a hot water bottle. I do have certain people I can talk to about my fibromyalgia, which helps. I also write poetry about how I feel"
How will your doctor know you have fibro?
Will I get better?
What can you do?
Work with the health professionals and your caregivers to try what is suggested. You can look at managing your activity levels by pacing what you do. This can result in you doing more, without exhausting your self or increasing your pain levels. It can be quite a difficult thing to learn, as the level of activity one person can cope with may be quite different to what another person can cope with. You basically have to work out your own boundaries and experiment with how much activity you can do before causing your symptoms to flare up. Remember that a flare up is not something to be afraid of, it is something to be learned from.
Sometimes, parents will worry and not want you to try out new activities because they don’t want you to be in more pain, which is perfectly understandable. But if you think you can do something it is important to give it a go as in this way you will learn what you are capable of and how much activity you can comfortably do in a day. If you are trying a new activity, start by doing it for a few minutes the first time and see what happens, then gradually increase the amount of time.
You can read a personal story from Katrina about her challenges of developing chronic pain at age 11 as she was looking to go to secondardy school.
Resources to help during school and university
There are more resources in our booklet but the list below can help youunderstand your rights and obtain support at school or university. Reasonable adjustments like more time for exams or aids such as a voice recorder may be available to you.
- Adjustments for Disabled students and apprentices | Disability Rights UK
- Disability rights: Education - GOV.UK
- Reasonable adjustments in college and university | Disability charity Scope UK
Support Resources
You can find out more about our helplines and support groups here including any notice due to holidays or closures.