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Useful Information

These articles contain information that you may find useful. It could be travelling with your fibro or preparing for a Dr's appointment.

About Fibromyalgia

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Category: Useful Information
Published on Friday, 23 May 2025 08:02
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Diagnosis

 

Fibromyalgia is challenging to diagnose, as it presents with symptoms that are similar to other conditions. While not a diagnosis of exclusion, other conditions may need to be ruled out.

It can take around 3 years to be diagnosed from first consultation, with many people taking much longer. Awareness has helped improve these timescales.

Often pain is the first symptom, people will discuss with their doctor when it continues for over 3 months for no apparent cause. Your doctor may schedule blood tests or scans to rule out other conditions. They may also refer you to other specialists.

What should I do if I think I have fibromyalgia?

NHS page on Fibromyalgia

Symptoms and signs

 

People with fibromyalgia may go to their doctor with different symptoms, but often they will be experiencing some of the following:

  • Pain all over the body and not just in one area
  • Difficulty with sleeping and feeling tired throughout the day
  • issues with remembering words 
  • Other symptoms like headaches and upset stomach etc

Symptoms can come and go and change over time. They can be mild or severe. We believe they are caused by the brain amplifying how we process information from our senses. 

If you are experiencing any of these, then speaking to your GP should be your first step. 

 

Treatments and therapies

 

These can involve over the counter or stronger painkillers and antidepressants, as well as other types of medications. Recent guidelines promote Cognitive Behavioural therapy (CBT), increasing activity including stretching and gentle exercises.

Self-management and learning about your fibromyalgia is critical to managing your own condition. Understanding, if there are any triggers such as stress or foods that you eat that you may have an intolerance t, can be significant in improving your symptoms. 

Pacing where you perhaps do less to be able to accomplish more can be very helpful as you want to avoid a boom and bust cycle.

 

Is there a cure for fibromyalgia?

 

Although there is no cure for fibromyalgia, there are ways to manage the symptoms. Fibromyalgia is among a number of conditions like diabetes and MS which do not have a cure. 

Medications, activity including stretching, CBT, and self-management like pacing are all part of the tool set that people may need to manage their condition. 

Over the last 20 years, research has improved our knowledge, but we still need more specific and effective treatments for the condition. 

 

Supporting someone with fibro

 

Most people with fibromyalgia will need support from a friend, family member, or carer at some point. If you are supporting someone with fibromyalgia, then you may be able to get extra support.

Fibromyalgia can put strains on relationships. You may not want to talk about it and have worries about the future. However, talking things through can help you both find a way through it. 

When newly diagnosed, sharing the basics of fibromyalgia like the symptoms can help, as well as hearing from other people who have the condition. Support groups in person or online are great for this. They well friends and family of those affected by fibromyalgia. 

Being there for your friend is a great start, while understanding that someone with fibromyalgia may need some extra space from time to time.

What's important as a friend

  • Let them know that you are there for them, and you will be there when they need you
  • Keep in touch through WhatsApp, texts or FaceTime and keep talking about things other than fibromyalgia that made you friends in the first place. 
  • Try to be where they are. Arrange to have a meal at home and watch a film rather than going out.

More info here or helping someone with fibro.

Support Resources

You can find out more about our helplines and support groups here including any notice due to holidays or closures. 

Start here for further support

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Category: Useful Information
Published on Thursday, 22 May 2025 15:00
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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 abscences 

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 fibrmyalgia 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 freindship, 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. 

The History of Fibromyalgia

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Published on Sunday, 12 May 2024 16:24
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It is International Awareness Day which falls on Florence Nightingales birthday each year. Around the world on May 12th there are events, awareness being raised and activities about increasing the awareness of fibromyalgia.
 
We thought this year as we have been creating a series of video content that we would create one that shows the history of fibromyalgia. Some people think it is a new condition with some dismissing it as a fad or made up. It is not and it is certainly not new. Veterans returning from World War 2 were dismissed as some still are today.

When checking out the videos on our YouTube channel be sure to Like and Subscribe and keep an eye out for new videos.

 

 

Further Sources of Help for your Mental Health

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Published on Sunday, 15 May 2022 14:11
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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. 

Pain Concern: Airing Pain 103: Pain and Relationships

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Published on Sunday, 08 July 2018 20:42
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How pain’s unpredictability can affect interpersonal relationships, and recognising help when it appears.

With between one third and one half of people living with chronic pain in the UK alone, the number of people experiencing the effects of pain explodes when considering family and friendships. For some of these people, life can become a cycle of hospital visits, blood tests, and scans. So, what can be done to ease these relationships?

In this edition of Airing Pain, Paul Evans and eminent psychotherapist Dr Barry Mason speak about their personal experiences with fibromyalgia and ankylosing spondylitis.

With many chronic pain conditions being “invisible”, explaining your pain may seem impossible, and as the family’s “uninvited guest”, it can cause people to close up to those looking to help. Dr Mason explains that not speaking about this uncomfortable topic can lead to further issues, and how opening up can lead to better family teamwork.

 We hope this edition of Airing Pain will help those living with pain to understand the importance of communication within relationships.

 

Airing Pain 103: Pain and Relationships is now available on our Audioboom page, which you can find here.

 

Health Professional Pack

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Published on Wednesday, 05 October 2011 14:13
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If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.

You can request a medical pack using this form.

More Articles...

  1. Coping with the Symptoms of Fibromyalgia Whilst Working
  2. Fibromyalgia Facts
  3. Relaxation Technique for Fibromyalgia.
  4. Survey of Five European Countries: prevalence of fibromyalgia.

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