Support for CRPS Sufferers
Complex Regional Pain Syndrome support for those living with CRPS
As sufferers of a chronic pain condition such as Complex Regional Pain Syndrome (CRPS), you will always find that there are days or times when you think you are on your own, where’s the next mortgage payment coming from, how you’re going to be able to afford your children’s school clothes, that you’re tired of everything and the world is on top of your shoulders. Well you are NOT on your own with this condition nor these feelings or thoughts you have or anything else surrounding this chronic pain condition.
This page is dedicated to complex regional pain syndrome support for you as someone living with CRPS. We have tried to get as many places where you can go for help, support and advice at any time. There are places to go to deal with finances, your mental health, chatting to other sufferers, health problems… If you use a service or go somewhere that you would possibly like to see on this page then please do contact us with your suggestion and we will certainly look into it. Don’t forget to use our FORUM as a place to go and ‘meet‘ other sufferers.We have 2 support groups running – Manchester and Bath/Bristol. If you are interested in coming along to our next support group in either Manchester or Bristol please check our EVENTS page for future dates. Visit our SUPPORT GROUP BLOG for all the details. Are you interested in starting up a CRPS support group in your area? If so contact us and let us know where you are and if you’re interested in becoming the leader of a support group in your area!
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You can find the following support information on this support for CRPS sufferers page:
- Chronic Pain including CRPS
- General health issues including mental health
- Suicide support
- Legal and Medico-Legal
- General Welfare support information
- HM Armed Forces
PAIN inc. CRPSIn this section we have given you a few websites to look at for general support for people who have chronic pain rather than specifically CRPS as we have an enormous amount of information dealing with CRPS.
- ABOUT MY PAIN (Abbott) – 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. You can download the About My Pain’s DRG Brochure via the DRG Brochure link. (If you want to learn more about the DRG Stimulation treatment for CRPS please visit the Burning Nights CRPS Support blog ‘Complete Guide to the Dorsal Root Ganglion(DRG) Stimulation Treatment for Complex Regional Pain Syndrome(CRPS)’.)
- aBodyofHope BLOG – This is a great blog site from a fellow CRPS/RSD sufferer who blogs and tweets poems, stories, inspirational quotes and much more. Why not give Mary from aBodyofHope a visit on her blog site?
- ACTION ON PAIN – There is a lot of useful information about living with persistent pain ‘You and Chronic pain’ section. There is a phone line for help and a direct email as well.
- ARTHRITIS RESEARCH UK – Arthritis Research UK is an informative website that talks not only about different forms of arthritis but also about 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.
- AMERICAN RSD HOPE – This is an excellent resource for both CRPS sufferers and carers, families, friends and medical professionals interested in CRPS / RSD. Unfortunately RSD Hope have now ceased to trade and their website will remain open for the next 5 years.
- AUSTRALIAN PAIN MANAGEMENT ASSOCIATION – The 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.
- BRITISH PAIN SOCIETY – The British Pain Society or BPS is an association / society where the professionals who deal with pain management or researching pain and bettering pain management. This may not seem like a good place to look for information on support for pain sufferers, however there is some information for ‘patients’ including FAQ’s, publications, useful addresses including for Complex Regional Pain Syndrome and other such information.
- CRPS NETZWEK – GEMEINSAM STARK (CRPS Network – strong together) – This is a CRPS website written in German for those CRPS sufferers in Germany and Austria. They have around 15 support groups all across Germany and a new one beginning 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.
- JGF ™ (Joey Giggles Foundation) – JGF™ is a US charity raising awareness for not only CRPS but many chronic pain conditions. Currently they operate on Facebook and have groups such as the Chronic Pain group
- LIVE WELL COMMUNITY CAFE – Visit the Live Well Community Cafe in Staffordshire! Live Well Community Cafe is a community initiative set up by MAC Clinical Research to support people living with chronic conditions including Complex Regional Pain Syndrome (CRPS)
- NHS CHOICES (CRPS section) – NHS Choices is a good UK resource for health conditions and NHS services. They have a section for CRPS which gives you a brief overview about the condition and treatments available.
- PAIN CONCERN – Pain Concern is a UK Organisation that is dedicated to:
- Producing information on pain using a variety of media platforms
- Providing support to people with pain and those who care for them
- Raising awareness about pain and campaigning to improve the provision of pain management services.
- Their helpline number is: U.K. 0300 123 0789 And is currently available:
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- PAIN MAPS – 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 – This 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 – 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 – 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.
- RCP GUIDELINES for CRPS – These are the Royal College of Physicians guidelines for CRPS sufferers in the UK.
- RSD/CRPS DOESN’T OWN ME – This is a good CRPS resource with plenty of links, articles etc.
- RSDSA – This is another excellent CRPS/RSD resource website for those in the USA and worldwide, it is based in USA.
- STANDUP2CRPS – This is the English website and project of CRPS Netzwerk
- THE PURPLE BUCKET FOUNDATION – This is a great CRPS organisation in Australia
- USA GUIDELINES for CRPS – These are the guidelines used in the USA for CRPS sufferers.
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HEALTH ISSUES inc MENTAL HEALTH
- ABBEY THERAPY PRACTICE for COGNITIVE BEHAVIOURAL THERAPY & COUNSELLING – Samantha Denney is the Abbey Therapy Practice practitioner in Cognitive Behavioural Therapy (CBT) and counselling. Samantha is a verified and fully registered UK SFTR CBT therapist based in Sheffield. She is also a fellow CRPS sufferer as well as a counsellor and CBT practitioner. She is a fellow supporter of Burning Nights. Please mention our name when you contact her. Her contact details are: Tel: 01142352652 | Mbl: 07483168909 | Email: email@example.com
- COUNSELLING / PSYCHOLOGY – You will 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 and often you need to talk about those feelings with someone outside of your home environment, this is when a counsellor or psychologist comes into play. There are a couple of good websites to be trusted to get a counsellor or Psychologist if your GP is unable to offer you one at your GP surgery or in your home town. The British Association of Counselling and Psychotherapy offers you a link to find a therapist in your area, this then takes you to a new page with ‘It’s Good to Talk.’ There is also the Counselling Directory that is also good not only as a source of information but also to find you a therapist near to you. Please visit our COUNSELLING FOR CRPS & CHRONIC PAIN blog to learn more about counselling.
- LOCAL GP / DOCTOR – 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 then please have a look at the NHS Choices website and put in your postcode, there you will ind your local GP’s.
- MASSAGE THERAPY – This is a proven technique for all of those suffering from chronic pain. There are a number of massage therapies on offer such as deep tissue, shiatsu, hot stone… This website discusses the benefits of massage therapy for chronic pain using a great image with details of benefits for the different massage types. Go to FIX – Health Benefits for Massage Therapy
- MIND – This is an excellent source of help not just for all areas of mental health issues, but also for help with housing, finances, there are also helplines that you can call for help with legal rights, where to get help, advocacy and other things. If you are having mental health problems, please don’t keep it within yourself it will make it worse later on. Don’t feel embarrassed or worried that it’s not important or it will go away because it never does simply go away. MIND also have an excellent guide to crisis services called -> MIND guide to Crisis Services which you can download. Please do visit the MIND website for more information about mental health issues. If you would prefer to contact MIND a different way, these are their details:
- NHS CHOICES – NHS Choices has a good range of information on not only various health conditions but also on NHS services as well. < http://www.nhs.uk/pages/home.aspx>
- NHS SERVICES – If you don’t feel you need to go to A&E, but you need medical help or advice fast and can’t wait for an emergency GP appointment, you can call NHS 111 (in England) or NHS Direct (in Wales). If it is an emergency then phone 999.
- PAJAMA DAZE – This is a great websites will useful blogs, links for a variety of conditions, inspiration or spiritual, book reviews and loads more for people suffering from a chronic condition/illness. Give Pajama Daze a look in!
- SAMARITANS – There are many ways to contact the Samaritans; phone (08457 90 90 90), email (firstname.lastname@example.org), by letter (Freepost RSRB-KKBY-CYJK, Chris PO Box 90 90, Stirling, FK8 2SA) )or visit in person. They are open 24 hours a day and all year round. Don’t ever feel that you’re alone or no-one can help you because there is always someone there to help guide you and support you in any and every way they can. Don’t be alone!
- THERAPY DIRECTORY – This is a UK based website with links and information about massage therapy and the different types available. Available from: <http://www.therapy-directory.org.uk/articles/massagetherapy.html>
- VARIOUS HEALTH SITES – www.healthandbeautylistings.org There are a number of good websites including Burning Nights – CRPS Support.
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SUICIDE SUPPORTSuicide is an area that many people don’t want to talk about, but unfortunately when suffering with chronic pain or a chronic pain condition such as CRPS/RSD, suicidal thoughts are common amongst sufferers. Please remember that if you need help and you are considering suicide, please contact somebody or tell somebody immediately, don’t wait. Don’t be afraid of telling someone how you are feeling. Suicide is final, there is no going back.
- MIND the mental health charity have an excellent guide on how to cope with suicidal feelings which you can download -> MIND – How to cope with suicidal feelings
UK and NORTHERN IRELAND
- HOPELINE UK / PAPYRUS – This is a specific helpline for suicide and problems associated with suicidal thoughts. Their details are:
- LIFELINE Northern Ireland – This is a FREE helpline is available for those living in Northern Ireland who are distressed, in crisis or despair. Call FREE on Northern Ireland 0808 808 8000
- SAMARITANS – They are open 24 hours a day 365 days a year. You can telephone, email or visit in person.
- SUPPORT LINE – SupportLine in the UK handle a variety of different areas including suicide issues. You can contact them by phone, email or in writing. Here are their details:
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SUICIDE HELPLINES OUTSIDE UK
- BEFRIENDERS WORLDWIDE – You are able to choose the country you live in for telephone numbers in your particular country
- CENTRE FOR SUICIDE PREVENTION – This is in Calgary, CANADA
- Crisis ONLINE CHAT: Available during the hours of 7pm – 4am (AEST) Visit this part of their website – www.lifeline.org.au/Get-Help/Online-Services/crisis-chat
- LIFELINE AUSTRALIA – This is a 24 hour 7 day a week helpline in Australia
- NATIONAL SUICIDE PREVENTION LIFELINE – This is for those in USA
- SUICIDE.ORG – There are different numbers for each state in USA & New Mexico.
- THE LIFELINE Canada – Based in Canada and has a 24 hour crisis helpline and online chat, guides and resources
- THE SAMARITANS NYC – This is a 24 hour helpline in USA
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FINANCES INCLUDING BENEFITS
- INGHAM GRAHAM WEALTH MANAGEMENT LTD (IGWM) – IGWM are a Partner Practice of St. James Place Wealth Management and are now Burning Nights’ Financial Advice Partner. Should you wish to discuss anything concerning finances or wealth management, don’t hesitate to call on Tel: 01457 864157 | Mobile: 07714 827 210 | Or visit www.igwm.co.uk/
- BENEFITS and WORK – This is an excellent resource full of information on the UK benefits that you are entitled to including Personal Independence Payments (PIP), ESA, DLA and more. Visit the BENEFITS and WORK website.
- DISABILITY BENEFITS (UK) – There are a few benefits available to you if you are unable to work due to disability. I have got the link from the GOV.UK website to its main page for benefits for disabled people. There is a similar sort of and also Northern Ireland Government website as well for similar sorts of information but for Northern Ireland.
- MONEY ADVICE SERVICE – If you are still in need of help to either re-sort your finances, get information or advice on the state of your finances then the Government have set up the Money Advice Service. It is supposed to be free and impartial. It does offer a good range of information on debts, pensions, borrowing, getting work if you are ill or disabled, budgeting, appealing against benefit decisions…. There is simply too many topics for me to include here, so please take a look and see what you think. This site is also available in WELSH. There is a MONEY ADVICE SCOTLAND which also has free, impartial and confidential help, support and advice on its website.
- SOCIAL SERVICES – This again is 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 from disability equipment to home care help with shopping, gardening, cleaning etc.. However you will need 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 there is the Independent Living section of The Scottish Government website which does provide a wide range of information on getting help in the wide area of Support & Social Care. In Northern Ireland there is Health and Support section of the Northern Ireland Direct Government Services which gives good range of topics to help with support in Social services.
- TIPS for TALKING MONEY to your SPOUSE – 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.
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LEGAL & MEDICO-LEGAL
- BRIAN BARR SOLICITORS, UK – Brian Barr solicitors are based in Manchester, UK and deal predominantly with fibromyalgia, chronic pain, CRPS and critical illness legal claims. They also have a regular blog about fibromyalgia and Complex Regional Pain Syndrome.
- BLB SOLICITORS, Bath, UK – This is a firm of solicitors in Bath, UK who have various specialisms as well as accepting various chronic pain condition legal cases such as CRPS, fibromyalgia and others. They also write an excellent chronic pain blog about various aspects of the conditions.
- FIONA ASHWORTH, Barrister – Fiona is a barrister at Kings Chambers, Manchester, Leeds and Birmingham. Fiona has been practising Personal Injury cases for over 25 years and 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 – 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.
- PANISH SHEA & BOYLE LLP, USA – The attorney who wrote this article about the litigation of chronic pain cases such as CRPS/RSD cases, is a trial lawyer at the firm of attorneys called Mr Spencer Lucas and has extensive experience in this area.
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GENERAL WELFARE SUPPORT
- REVITALISE RESPITE HOLIDAYS – At Revitalise we create amazing holidays for our disabled guests and their carers. Over the last 50 years we have become both the UK’s largest provider of respite holiday breaks and the UK’s largest residential volunteering charity. We 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. We welcome guests of all disabilities.
- THE ACCESSIBLE PLANET – This great website is a wealth of information including mobility, fitness, charities, news & articles, things for children and much more. If you want to take a look click The Accessible Planet. TheAccessiblePlanet.com – fastest growing resource for everything wheelchair accessible and for those with reduced mobility. Wheelchair access vehicles to stairlift prices!
SERVING OR SERVED MEMBERS OF HM ARMED FORCESFirstly, may we take this opportunity of saying a very big THANK YOU for having been in Her Majesty’s Armed Forces or are still in the forces. You all do or have done a fantastic thing in serving Queen and Country, so Thank you! There is help out there for members or ex-members of the forces in many areas of their lives who have a chronic condition or chronic illness, however 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 a totally different pace. If you go to or know of anywhere you use to help you in areas of support then please do CONTACT US and we will look into it and probably post it on this page.
- ARMY of ANGELS – This website gives help and support to those members of the Forces who were mentally or physically injured whilst serving in HM Armed Forces and are also having financial problems. They can give grants for a variety of things such as rehabilitation equipment, alterations to your home or even respite breaks
- BRITISH LEGION – This is a great charity that can help not just those who have served, but also serving members and their dependents. The site offers online support, pop-in centres and a telephone line (freephone number on UK except ROI 0808 802 8080 phone number is ROI is 1800 992 294) There is a Legion in Scotland called Poppyscotland, Wales in English and in Welsh and Ireland
- HELP FOR HEROES – Help For Heroes is a UK charity that will provide support for those soldiers who have received injuries and illnesses that have been sustained whilst serving in any arm of the British Armed Forces. There are various ways you can receive support from Help For Heroes, why not have a look at the support and help they can offer via their website.
- SSAFA – This is the charity to supporting both serving and veterans of the Armed Forces. They can give you support in various ways such as housing advice, confidential helpline, health services, social services, support groups etc. There are 2 sections to the SSAFA site VETERANS and SERVING PERSONNEL . There are a couple of telephone helplines that are available the FORCESLINE is not 24 hours a day but it is available for those serving, veterans and also their families.
- Nauert, R. PhD. (2015) ‘Tips for Money with Spouse,’ Psych Central Website. August 5, 2015. Available from: < http://psychcentral.com/news/2015/08/04/tips-for-money-talks-with-spouse/89755.html>