There are many support groups, charities, and websites offering help and support to people with Fibromyalgia and their carers.
Here are few of the places people can turn to for help (click the purple text to visit their website):
- Fibromyalgia Warriors UK Support Group – a Facebook group with thousands of members affected by Fibromyalgia, who share opinions, experiences, and stories.
- Action on Pain – a UK charity campaigning for people living with chronic pain, which provides a helpline and suggestions for 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 – the 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.
And our very own group
- Fibromyalgia Friends Together – we are a very friendly group of people that meet every 3rd Thursday of the month at Ulverscroft Manor in Leicestershire. We are here to listen and help people come to terms with their illness. You will be made most welcome. We also have a Facebook Page.
Grants and Benefits
Here are a list of grants available for people with Fibromyalgia and other disabilities.
Disabled Facilities Grant
This is available from local councils in England. It is available for those with substantial disabilities help with funds towards adaptations to their homes.
Click the link below if you are in Leicestershire.
Disabled Facilities Grant
The Disabled Gardeners Trust
The Disabled Gardeners Trust is there to help gardening more accessible. They have a simple grant process, and funds things like raised beds, disabled-friendly gardening tools and paths for wheelchairs. You can find out more from their website www.gardeningwithdisabilitiestrust.org.uk
The Hospital Saturday Fund
This fund seeks to support people with a medical condition or disability who would benefit from the purchase of equipment or treatments. They provide up to £2,000, however, they like to see evidence of where you have applied to another organisation to part fund. Examples of things they would fund include reflexology, massages, specialist beds, wheelchairs and hearing aids. You cannot apply directly and must apply through an organisation such as your local Citizens Advice Bureau. Their website is at www.hospitalsaturdayfund.org/apply-for-a-grant
Leonard Cheshire
The charity Leonard Cheshire, are working with disabled people to improve digital skills and access, through providing free refurbished equipment, such as PCs and laptops. They also fund special equipment that a disabled person may require, including speech to text recognition software. If you need it they also have free online courses in English and Maths. Find out more for their website at
www.leonardcheshire.org/what-we-do/learning-and-lifestyle/learn-technology/digital-home
Benefits
There are a wide range of benefits which you may be eligible for provided you meet their criteria.
These can include Disability Living Allowance (DLA) and there are also Personal Independent Payments (PIP) in England or Disability Payment in Scotland. If your health is such that you require assistance from another individual you may be able to claim Attendance Allowance. Should your condition impact how much you work there is Employment and Support Allowance available. If you are employed and you become too unwell to work you should be able to claim Statutory Sick Pay from your employer for 28 weeks. For carers there is Carer’s Allowance you may be able to claim if you care for over 35 hours per week and other eligibility criteria is met.
Please contact the group if you need help and support claiming benefits as we may be able to help. Our June 2023 Newsletter explored this topic in more detail so please take a look at that for further information.
Additionally, there is a lot of information on the Citizens Advice Bureau Website, also or you may which to ask them for guidance and support with any benefit applications. www.citizensadvice.org.uk
Other helpful Support
Access Card (sometimes known as the CredAbility or Nimbus Card)
This is available to support individuals with communicating any barriers you face accessing things and reasonable adjustments that you need, such as when you are out shopping. You have to apply for the card and there is a cost. Reasonable evidence to support your application is required. Please visit the website for further information.
www.accesscard.online
Blue Badge Scheme
Anyone over the age of 3 who has mobility issues may be eligible for the Blue Badge to help with parking.
This is usually available from your Local County Council in England. For more information if you live in Leicestershire click here.
Reviewed September 2023
Disclaimer
All the content within these pages has been sourced through a variety of online medical and alternative therapy information sources, and at the time of publishing we believe them to be true statements.