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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.

Support for Young People with fibromyalgia

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Published on Saturday, 31 May 2025 19:01
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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.

But you’re not alone—we're here to help. We offer a variety of information, resources specifically designed for children and young people. Our Young persons booklet provides help and resources and is aimed at 5 - 16-year-olds. We understand the impact of fibromyalgia on people, and particularly for children and young people. The parents of young people with fibromyalgia also need support so they can be there for their child.  
 

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?

The first port of call is always your GP. GPs should follow what they do for any childhood condition, treat it as a general thing at first and then if it doesn’t clear up refer you on to a community paediatrician at your local hospital.
 
They will do a general health check, and they may refer you to a paediatric rheumatologist if fibromyalgia is suspected. Some doctors are cautious about labelling a young person with fibromyalgia. This is because many young people can get better, and doctors do not want a young person to see themselves as having an adult condition they may never recover from. 
 
For this reason doctors may diagnose you with another condition like chronic pain syndrome or something else and if the symptoms carry on into adulthood then a diagnosis of fibromyalgia might be made. 
 

Will I get better?

Young people can get better over time. Young people have a better chance of recovery than adults with fibromyalgia. This is because young people are still growing, so their nervous system is changing and developing all the time.
 
Some young people still have grumbling symptoms beneath the surface which may flare at a later date, or may disappear altogether. At the moment, there are no scientific studies that have followed children with fibromyalgia closely over long periods of time.
 
Treatments may be offered to reduce the symptoms you are feeling. It is possible to get your life back on track, either with symptoms disappearing or under control.

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.


 

Support Resources

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

Caring for those with fibromyalgia

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Published on Saturday, 31 May 2025 17:04
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Fibromyalgia affects more than those that are diagnosed with the condition. It can impact the family as a whole by reducing the family income or putting the burden of chores onto other family members. It can also, require some family members to provide a caring role to a parent, a sibling, a partner or to a son or daughter. 

Our information has information booklet has a section called For those who care that talks about the challenges of caring for a person who has been diagnosed with fibromyalgia. It covers the following areas.

  • Initial reactions and questions that someone will have
  • Good and bad days and the impact of treatments
  • Making the most of good days
  • Working as a team
  • Importance of communication

We plan to improve the content that we have for carers and fibromyalgia.

Carer Support

If you provide support for someone with fibromyalgia for at least 35 hours a week, then you will be entitled to Carer's Allowance or Carer Support Payment in Scotland. To qualify, you will need to be over 16 and is not means tested. 

You may be able to apply for extra money from grants or benevolent funds, or get money off your TV licence or car tax. More info here.

When you have caring responsibilities, it can be really helpful to prove your role to access some types of services and support. This can be useful for many reasons, from receiving discounts to receiving special assistance or a bit of extra support from professional and public services.

A Carer's allowance award letter or a letter from your GP can help you ontain this support or you can have a carers assessment carried out. 

You can also obtain a CEA card that allows a carer to have a free ticket to the cinema when accompanying the person they care for.

Support for Carers

Caring for someone can put pressure on the carer, and they may need some support at certain times. The organisations below offer information and support. 

It is important to seek support as early as possible and not sacrifice your own health so you can continue to be there and effectively support your loved one. 

  • Carers UK - A national charity that provides information, advice, and support to carers. They also advocate for carer rights and work to improve services for carers.
  • The Carers Trust - This organisation offers support and information to unpaid carers and works to improve the lives of carers through various programs and initiatives.
  • Many local authorities have their own carers' centres that provide support, advice, and resources tailored to the local community.
  • Mind - Learn how to manage your own wellbeing while caring for someone else.

Support Resources

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

What should I do if I think I have fibromyalgia?

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Published on Thursday, 29 May 2025 17:52
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What should I do if I think I have fibromyalgia?

Firstly, you are not alone and there are many that have started this journey before you. There will be people that you can get information, tips, and advice from that may help you. There is peer to peer support available within our communities and support groups that you can engage with. 

The diagnosis of fibromyalgia can take 2 years or more to be diagnosed and can be complex with having to rule out other conditions that present with similar symptoms. If you have any of the 4 core symptoms mentioned here or if you are not feeling right then please contact your GP and talk to them. 

It is hard to pinpoint where fibromyalgia may begin. Some people looking back can highlight a piece of trauma that their fibromyalgia may be connected to, like a car crash or an operation. Often people will go to their GP with complaints about pain that may initially be localised to an area, or it could be the non-refreshing sleep. The time it takes to be diagnosed can be frustratingly long, with visits to many health professionals. Your health team may need to carry out various tests and explore other conditions before coming to a diagnosis.

Most people who have unexplained symptoms will not have fibromyalgia, but you should consult your GP.

Why is Fibromyalgia difficult to diagnose?

Diagnosis of fibromyalgia is challenging to diagnose for a number of reasons, and not least that the symptoms can be present in many other conditions. Symptoms also vary, and there can be a number of them, and they can fluctuate as well. A patient can have difficulty trying to describe all that is going on to their health professional. Sometimes this can result in an information overload for the health professional. Short appointments can also add to the difficulty, and patients may be diagnosed incorrectly with alternative conditions and only receive a diagnosis after years of delay. Conversely, it is also possible to be misdiagnosed with fibromyalgia for the same reason.

Your health professional can be your best asset in your fibromyalgia journey, especially if they work as your partner, helping you to navigate while listening to your contributions. Their confidence level in fibromyalgia can make the difference between them being able to diagnose or help you. This does make them a bad health professional and if they learn from you, they can become more confident and helpful.  

RCP Diagnostic guidelines

The Royal College of Physicians created guidelines called the diagnosis of fibromyalgia syndrome in August 2021 that aim to support clinicians diagnose fibromyalgia, no matter if it is at a rheumatology clinic or more commonly now at your GP practice.

These guidelines were produced with the input of many professionals as well as patient input. A patient can point their health professional to the clinicians version of these guidelines below if they express difficulty in diagnosing or accepting the condition. 

You can read the guidelines below, and we would recommend the patient guide and the diagnostic worksheet below:

NICE guidance on chronic primary pain (NG193)

NICE published guidance on the treatment of chronic pain in over 16s in April 2021. This was the result of looking at previous studies too with an aim to provide the safest and most effective treatments. While it was not focussed on fibromyalgia, our condition featured significantly as the example of chronic primary pain without a clear underlying cause.
 
Most of your ongoing treatment will be conducted by your GP, and they will look to this guidance, but they can vary your treatment in order to provider better outcome for you.
 
Part of this guidance removed some previous options from being recommended, e.g. Tramadol or Pregabalin. However, it also states that if you are using a treatment like these that is effective for you, then it should be a shared decision-making process and any working treatment should not be stopped unilaterally.
 

Support Resources

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

Why are research study criteria so strict or specific?

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Published on Thursday, 29 May 2025 17:31
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We will promote research about fibromyalgia as often as we can. This research comes from various institutions and involves students and academics at different levels. Different research will have varying requirements that change depending on what type of study, what level it is at and the type of research it is conducting. Some examples on the types of study and how they can vary is listed below:
  • Undergraduates are learning their subject and finding out how to research a subject. These studies will typically feature a very limited scope, require very few participants i.e. under 10 and the student will appreciate feedback on the methods as well as the study itself.
  • MSC / Postgraduate are further on than Undergraduates, but they are still more focussed on learning about their subject than adding to new fibromyalgia knowledge. These studies will still require small numbers of respondents.
  • Funded or PhD research is more what we would consider “proper” fibromyalgia research, with the researchers aiming to increase their knowledge but also add new information to their field of study. The number of participants for these studies can vary widely, from 15 to 300 and beyond. 
With this in mind, the criteria for who is to be included and who is not will vary significantly. An undergraduate may be looking for 10 people with fibromyalgia, but a PhD researcher may be looking for 50 women who have fibro along with current in part-time or full-time employment and have children. The more involved or complicated the research is will tend to mean that the inclusion and exclusion criteria is more specific.  
 
However, people often in our communities why the research criteria are often specific in certain requirements. This may be because they want to take part and feel excluded or underrepresented. Common examples are:
  • Why is there an age requirement, e.g. over 40s?
  • Why do they only want women?
  • Why do they not want people with this condition? e.g. fibromyalgia and polymyalgia
  • Why are they excluding people with MS?

Reasons for having specific inclusion criteria

In a clinical research study, the inclusion criteria are critical for several reasons, and their strictness is essential to ensure the integrity and validity of the study. Here are the key reasons why inclusion criteria are important:
  1. Homogeneity of the Study Population
    • Consistency: Strict inclusion criteria help create a more homogeneous study population, which reduces variability in the responses to the intervention being tested. This consistency allows researchers to better isolate the effects of the treatment or intervention.
      Target Population: By defining specific characteristics (e.g., age, gender, disease stage), researchers can ensure that the study population closely resembles the target population for whom the treatment is intended.
    • Safety and Ethical Considerations:
  2. Minimizing Risk
    • Inclusion criteria help identify individuals who are most likely to benefit from the intervention and least likely to experience adverse effects. This is particularly important in studies involving new or experimental treatments.
    • Protecting Vulnerable Populations: Strict criteria can help protect vulnerable populations from being exposed to potentially harmful interventions.
  3. Scientific Validity
    • Clear Outcomes: By selecting participants with specific characteristics, researchers can more accurately measure the outcomes of interest. This clarity is essential for drawing valid conclusions from the study.
    • Generalizability: While strict inclusion criteria may limit the generalizability of the findings, they ensure that the results are applicable to a well-defined group, which can be critical for understanding the treatment's effects.4. Regulatory Compliance:
  4. Adherence to Guidelines
    • Regulatory bodies often require strict inclusion criteria to ensure that studies are conducted ethically and scientifically. Compliance with these guidelines is essential for the approval of new treatments.
  5. Facilitating Recruitment and Retention
    • Targeted Recruitment: Clear and strict inclusion criteria help researchers identify and recruit suitable participants more effectively. This targeted approach can streamline the recruitment process and improve retention rates throughout the study.
  6. Data Integrity:
    • Reducing Confounding Variables: By limiting the study population to those who meet specific criteria, researchers can reduce the influence of confounding variables that could skew the results. This enhances the reliability of the data collected.
A real world example from a study where males were difficult to recruit onto a study and the lack of male participants interferes with the statistical power and data interpretation. The study recruited over 900 participants with fewer than 40 males being included, and this results in a significant imbalance that would be challenging to account for confounding factors. Thus, the tendency is to start with a female only cohort to limit variability and once proof of purpose has been established attempt to expand to males.
 
The purpose of research studies is not to cover everyone but to prove that some intervention or change in practice is safe firstly, then effective, and then it can hopefully be expanded to wider groups beyond the study cohort. Keeping confounding factors to a minimum helps with cost, design and the overall effectiveness and robustness of the study.

Conclusion

In summary, strict inclusion criteria in clinical research studies are essential for ensuring the safety of participants, maintaining the scientific validity of the study, and facilitating regulatory compliance. While they may limit the generalisability of the findings, they are crucial for producing reliable and interpretable results that can inform clinical practice and future research.
 

Employment Resources

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Published on Wednesday, 28 May 2025 10:30
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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.

Barriers people face in the workplace can include needing to take time off when having a flare-up or getting to and from work. If there is a lack of understanding from employers, then they may be reluctant to make reasonable adjustments. 

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.

Support Resources

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

Further Support

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Published on Saturday, 24 May 2025 14:36
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More Articles...

  1. About Fibromyalgia
  2. Start here for further support
  3. The History of Fibromyalgia
  4. Further Sources of Help for your Mental Health

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