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As a sufferer of a chronic pain condition such as Complex regional Pain Syndrome (CRPS), you will always find that there are times when you feel as though you are on your own. You might feel overwhelmed with thoughts like "Where's the mortgage payment coming from?" "How am I going to be able to afford school clothes for the children?" and it could seem as though you're tired of everything and the world is on your shoulders.
You are not on your own. There are people who want to support you on your journey with this condition and help you through these thoughts and feelings.
This page is dedicated to the support available to you as someone living with Complex Regional Pain Syndrome. We have attempted to pull together as many sources of help, support and advice for CRPS patients as we can. There are organisations who can support you with finances, legal cases, your mental health, and other health problems.
Please see the drop down links at the bottom of the page to find out more about the different areas of support. If you have any suggestions for other resources or organisations that could be included here, please get in touch. For more details of the support available to family, friends and carers of CRPS sufferers, visit Resources for Loved Ones & Caregivers.
Burning Nights CRPS Support offers a number of Support Services for CRPS patients, their families, loved ones and caregivers. We hold regular Online Support Groups and you can also use our Online Community Forum to meet others affected by CRPS, seek advice and share your experiences.
The About My Pain website from Abbott is a great resource for not just CRPS sufferers but also for those living with chronic or persistent pain. There is information on treatment options, finding a pain clinic and the Dorsal Root Ganglion stimulation treatment amongst other things. Download the About My Pain DRG Brochure.
Visit the Treatments section for more information on Neuromodulation and Dorsal Root Ganglion (DRG) stimulation treatment for CRPS.
This is a great blog site from a fellow CRPS sufferer who blogs and tweets poems, stories, inspirational quotes and much more. Visit Mary on her aBodyofHope blog site.
Action On Pain provide a lot of useful information about living with persistent pain in the 'You and Chronic pain' section. There is also a helpline and direct email to contact for support as well.
The Austrailian Pain Management Association (APMA) is a great resource for sufferers in Australia. There is a lot of information on self-help, support groups around the country, video resources and more, including a support helpline.
The British Pain Society (BPS) is an association of professionals who deal with pain management or researching pain and bettering pain management. This may not seem an obvious place to look for information on support for pain sufferers, however there is some information for patients including FAQ's, publications, useful addresses, and other such information.
CRPS Netzwerk is a CRPS information and support website written in German for CRPS sufferers in Germany and Austria. There are details of help, articles and directories that may assist you as a CRPS sufferer. They have around 15 support groups all across Germany and one in Austria. < http://www.crps-nrw.de/ >
JB Occupational Therapy (JBOT) is a very informative website that deals with a number of chronic conditions including Complex Regional Pain Syndrome (CRPS), chronic pain and hypermobility. The blog is expertly written by an Occupational Therapist, Jo Southall, who also has hypermobility syndrome.
Joey Giggles Foundation™ is a US charity that raises awareness for CRPS and other chronic pain conditions. They currently operate through Facebook and have groups such as the Chronic Pain group.
Visit the Live Well Community Cafe in Staffordshire, a community initiative set up by MAC Clinical Research to support people living with chronic conditions including Complex Regional Pain Syndrome (CRPS).
NHS Choices is a good UK resource for health conditions and NHS services and features a section for CRPS which provides a brief overview of the condition and treatments available.
Pain Concern is a UK Organisation dedicated to:
Pain Maps is a resource centre dedicated to neuroplastic approaches to healing pain and neurological dysfunction. In support of self-education and initiative, it offers material, sources and ideas that enable non-invasive, drug-free options to pain reduction while exploring new dimensions in the narrative of neuroscience.
Pain Toolkit was created by Peter Moore and is now a recommended tool for those living with chronic pain. There are 12 pain self-management tools in the toolkit along with videos.
Patient is a UK website full of fantastic information about health, various conditions (including CRPS) and support groups. They also have a Well Being blog packed with information.
Patient Worthy is a great resource for anyone with a rare condition like Complex Regional Pain Syndrome (CRPS). It is an online publication that provides fantastic news, information and support not only to patients with rare conditions but also to their families and carers. They provide support for CRPS sufferers as well as their families and carers. Burning Nights CRPS Support is a Partner of Patient Worthy.
The Royal College of Physicians (RCP) Guidelines for CRPS sufferers in the UK.
RSD/CRPS Doesn't Own Me is a good CRPS resource with plenty of links, articles, etc.
Based in the USA and established more than 30 years ago, RSDSA is another excellent CRPS/RSD resource website for those in the USA and worldwide who have been affected by Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD).
Stand Up 2 CRPS is the English website and project of CRPS Netzwerk.
The Purple Bucket Foundation is a CRPS organisation based in Australia.
These are the guidelines used in the USA for CRPS sufferers.
Versus Arthritis, formerly known as Arthritis Research UK, is an informative website that includes information about different forms of arthritis and also covers Complex Regional Pain Syndrome. There are other sufferers' stories, self-help, research and developments. There is also a lot of information on dealing with other chronic pain conditions that can sometimes come with CRPS.
Samantha Denney is the practitioner in Cognitive Behavioural Therapy (CBT) and counselling at AbbeyTherapy Practice. Samantha is a verified and fully registered UK SFTR CBT therapist, based in Sheffield. She is a fellow CRPS sufferer and supporter of Burning Nights, as well as a counsellor and CBT practitioner. If you should get in contact with Samantha, please mention Burning Nights CRPS Support. Contact details: Tel: 01142352652 | Mbl: 07483168909 | Email: info@abbeytherapypractice.co.uk
You might find that your mental state changes when under pressure from the stress of living with pain. You may feel angry, upset, depressed, tired and other emotions that need to be dealt with. It can help to talk about those feelings with someone outside of your home environment, such as a counsellor or psychologist.
You might be able to get a referral for counselling through your GP or you can find therapists in your local area through the British Association of Counselling and Psychotherapy, who also provide information on their 'It’s Good to Talk' page. The Counselling Directory is good not only as a source of information as well as a resource to find a therapist near to you.
Burning Nights CRPS Support also offer a CRPS Counselling Service for people living with Complex Regional Pain Syndrome. Visit our article on Counselling For CRPS & Chronic Pain to learn more.
Unfortunately, there are CRPS sufferers who have needed to have the affected limb/s amputated. The Limbless Association is a long-standing charity who deal with all types of limb loss, whether that’s through Complex Regional Pain Syndrome or something else.
Your GP is the best place to start for a lot of things concerning your health. Confide in them and they may be able to help you. If you don’t have a GP and you need to see one, visit the NHS Choices website and enter your postcode to find local practices.
Massage therapy is a proven technique for sufferers of chronic pain. There are a number of massage therapies on offer such as deep tissue, shiatsu, hot stone… FIX – Health Benefits for Massage Therapy discusses the benefits of massage therapy for chronic pain, including informative graphics and details of the benefits of the different massage types.
Mind is an excellent source of help, not just for mental health issues, but also for help with housing, finances, legal rights, where to get help, advocacy, and other issues. If you are having mental health problems, don’t keep it to yourself - it will make it worse later on.
Don’t feel embarrassed or worried that it’s not important or think that it will go because it isn't that simple. Mind also have an excellent Guide to Crisis Services, which you can download. Visit the Mind website for more information about mental health issues and the help available, or get in touch another way:
NHS Choices is a resource for health conditions and NHS services in the UK. It features a section for CRPS which provides a brief overview of the condition and treatments available.
If you don't feel that you need to go to A&E, but you require medical help or advice fast and cannot wait for an emergency GP appointment, you can call NHS 111 (England) or NHS Direct (Wales).
In an emergency, call 999 or visit your local A&E department.
Pajama Daze has a range of useful blogs, links for a variety of conditions, inspiration or spiritual, book reviews and loads more for people suffering from a chronic condition/illness.
There are many ways to contact the Samaritans. They are open 24 hours a day, all year round. Don’t ever feel that you’re alone or no-one can help you; there is always someone there to help guide you and support you in any and every way they can.
Therapy Directory is a UK-based website with links and information about massage therapy and the different types available.
Therapy Route is a directory of counsellors, psychologists, psychotherapists and mental health clinics around the world. There is the option to filter the mental health specialist in the directory for those who treat chronic pain patients.
There are a number of good websites and resources out there. Health and Beauty Listings is a directory that could help you to find what you're looking for.
Suicide is a subject that many people don't like to talk about, but unfortunately, when suffering with a chronic pain and conditions such as CRPS, mental health issues including suicidal thoughts are not uncommon.
If you need help and are having suicidal thoughts, please contact someone or talk to someone you trust immediately. If you struggle to talk to the people around, perhaps because you don't want to upset them, there are a number of charities and organisations who might be able to help. Don't be afriad of telling someone how you are feeling. Suicide is a final, there is no going back.
HOPELINEUK is a free and confidential helpline from Papyrus specifically for suicide and problems associated with suicidal thoughts.
Tel: 0800 068 4141 (UK) (Open Monday to Friday 10am to 10pm, Weekends 2pm to 1am, and Bank Holidays 2pm to 5pm)
Lifeline is a free helpline, available for people living in Northern Ireland who are distressed, in crisis or despair.
Tel: 0808 808 8000 (Open 24 hours a day, 365 days of the year)
Mind is a mental health charity and provide guide on how to cope with suicidal feelings. Visit the Mind website for more information about mental health issues and the help available, or get in touch another way:
There are many ways to contact the Samaritans. They are open 24 hours a day, all year round. Don’t ever feel that you’re alone or no-one can help you; there is always someone there to help guide you and support you in any and every way they can.
SupportLine in the UK handle a variety of different issues, including suicide. You can contact them by phone, email or in writing.
You are able to choose the country you live in and find telephone numbers for befriending support in your country.
W: www.befrienders.org/need-to-talk
Tel - Calgary, Canada: 403-266-HELP (4357)
Email: help@distresscentre.com
Available during the hours of 7pm-4am (AEST).
W: www.lifeline.org.au/Get-Help/Online-Services/crisis-chat
A helpline in Austrailia, available 24 hours a day, 7 days a week.
A directory of suicide helplines in different states in the USA and internationally.
W: www.suicide.org/suicide-hotlines.html
Based in Canada, The LifeLine has a 24-hour crisis helpline and online chat, guides and resources,
Tel - Canada: 1-800-668-6868
A 24 hour helpline in USA.
Ingham Graham are a Partner Practice of St. James Place. Should you wish to discuss anything concerning finances or wealth management you can contact them via Tel: 01457 864157 | Mobile: 07714 827 210 | Or visit: www.igwm.co.uk/
The Partner Practice is an Appointed Representative of and represents only St. James’s Place plc, which is authorised and regulated by the Financial Conduct Authority, for the purpose of advising solely on the Group’s wealth management products and services. More details of which are set out on the Group’s website: www.sjp.co.uk/products. The 'St. James's Place Partnership' and the titles 'Partner' and 'Partner Practice' are marketing terms used to describe St. James’s Place representatives.
SJP Approved xx/xx/xxxx
The UK Government website is a good source of information, but due to its vast size, it can be diffifult to navigate. We have tried to divide it up into smaller sections (see below) to assist you in finding the help you might need with any finance issues that have arisen because of your CRPS or persistent pain.
Burning Nights CRPS Support is a professional member of Benefits and Work, an organisation that provides specialist guides to claiming Disability Living Allowance (DLA), Personal Independence Payment (PIP), Incapacity and Employment Support Allowance (ESA). This is an excellent resource for information on UK benefits and what you may be entitled to.
There are different benefits available to people who are unable to work due to disability. GOV.UK have a page dedicated to benefits for disabled people and there is a similar page on the website for the Northern Ireland Government.
If you are in need of help to either re-sort your finances, get information or advice on the state of your finances, the Government have set up the Money Advice Service. It is supposed to be free and impartial and offers a good range of information on debts, pensions, borrowing, getting work if you are ill or disabled, budgeting, appealing against benefit decisions, and more.
The site is also available in Welsh and for those living in Scotland, Money Advice Scotland also has free, impartial and confidential help, support and advice on its website.
In itself, this is again a very big area to deal with. Each local authority has its own Social Services department and it can deal with a variety of different issues - from disability equipment to home care help with shopping, gardening, cleaning, etc... However, you will require a 'needs assessment' from your local Council before you can request anything. This is only applicable in England and Wales.
In Scotland and Northern Ireland it is slightly different. In Scotland, take a look at the Independent Living section of The Scottish Government website which provides a wide range of information on getting help in the wide area of support and social care. In Northern Ireland, visit the Health and Support section of the Northern Ireland Direct Government Services for a range of topics relating to support in social services.
An article written by Nauert, R. PhD for Psych Central website, giving a list of tips to help you talk to your spouse / loved one / partner about money troubles and problems as well as during the good times.
Burning Nights CRPS Support has a small Legal Panel for claims relating to Complex Regional Pain Syndrome (CRPS), consisting on law firms who have experience in handling CRPS legal cliams. Find out more about our Legal Panel.
Fiona is a barrister at Kings Chambers, Manchester, Leeds and Birmingham. Fiona has been practising Personal Injury cases for over 25 years and has specialised in chronic pain and chronic pain conditions, like CRPS and fibromyalgia, for over 10 years. Ms Ashworth is also our Charity's Patron.
Medico-Legal Associates work with only the most talented experts who are recognised to be leading clinicians in Pain and Anaesthesia by their profession, peer group and their patients. They are also well respected by many leading Barristers and Solicitors whether working for the Claimant or the Defendant. Medico-Legal Associates are also able to take on Complex Regional Pain Syndrome (CRPS) cases and their expert Doctor, Dr C. Jenner is also a CRPS specialist.
The attorney who wrote this article about the litigation of chronic pain cases, such as CRPS cases, is a trial lawyer at the firm of attorneys called Mr Spencer Lucas and has extensive experience in this area.
Revitalise create amazing holidays for disabled guests and their carers. Over the last 50 years, they have become both the UK’s largest provider of respite holiday breaks and the UK’s largest residential volunteering charity. Revitalise have three holiday locations located in Chigwell, Southampton and Southport, which are fully accessible for wheelchair users. Each location provides the reassurance of 24 hour on-call nurse-led care to those who require it, as well as exciting excursions, in-house activities and entertainment, and the opportunity for both the carer and cared for to enjoy a break. They welcome guests of all disabilities.
The Accessible Planet is a website provides information on a number of topics, including mobility, fitness, charities, news and articles, things for children, and much more. They are the fastest growing resource for everything wheelchair accessible and for those with reduced mobility - from wheelchair access vehicles to stairlift prices.
Are you interested in running or cycling? Check out the races on runABC Midlands! As a charity we have a number of places in running and cycling events. Contact us for information on how you can get involved.
Firstly, wed like to take this opportunity to say THANK YOU for serving in the Armed Forces on behald of Queen and Country
There is help out there for members or ex-members of the forces for many areas of their lives, including those who have a chronic condition or chronic illness. We have selected just a few to include on this page.
Once you leave the Forces you will most likely be at a total loss of where to go, what to do… Often you have spent a long time in one of the branches of the Armed forces and you have grown accustomed to doing that job and then you go into 'civvy' street and life runs at a totally different pace. If you go to or know of anywhere you use to help you in areas of support, please do Contact Us and it could be added to this page.
This Army of Angels is a website that gives help and support to those members of the Armed Forces who were mentally or physically injured whilst serving or who might be experiencing financial problems. There are grants available for a variety of situations, such as rehabilitation equipment, alterations to your home, or even respite breaks.
The Royal British Legion is a charity that can help those who have served, as well as those still serving, and their dependent. The site offers online support, information about pop-in centres, and a telephone line. There are also Legions in Scotland (called Poppyscotland), Wales (also available in Welsh), and Ireland.
Help For Heroes is a UK charity that provides support for soldiers who have sustained injuries and illnesses whilst serving in any arm of the British Armed Forces. Find out more about the support available via their website.
This charity supports both serving and veterans of the Armed Forces through support such as housing advice, confidential helpline, health services, social services, support groups, and more. There are 2 sections to the SSAFA site: VETERANS and SERVING PERSONNEL. There are also telephone helplines that are available - the FORCESLINE is for those serving, veterans and their families (not 24-hours).
At Burning Nights CRPS Support charity, we are trying to not only raise awareness of Complex Regional Pain Syndrome (CRPS) but also provide support anyone affected by the condition. Not not only those living with a diagnosis of CRPS, but also the families, friends, carers and loved ones.
If you need CRPS help and support please don’t hesitate to Contact Us and we will endeavour to support you and your family, loved ones and friends.
The third parties mentioned on the websites are exclusively responsible for their own products and services. Burning Nights CRPS Support accepts no liability in relation to third party products or services or any failure to supply such products or services. You may access third party websites through links contained on our Website. Such third party websites are not under the control of Burning Nights CRPS Support and Burning Nights CRPS Support is not responsible for the availability of such Websites or their content. Any links provided on our or their websites are provided for your interest or convenience only and do not represent or imply any endorsement of such linked websites by Burning Nights CRPS Support. You acknowledge that your use of such third party websites is governed by the terms and conditions of use as applicable to those websites.