Thank you to each and every person who has taken the time to share their thoughts, comments and feedback with us – whether by email, social media, or talking to us. Your testimonial means a lot.
“A massive shout out to Burning Nights CRPS Support as without their support and help from the community a lot of people may not be here today. It’s good to know you’re not alone and have someone to give advice about something that myself and so many others suffer from” – Andrew, CRPS patient
“So appreciated by all as not only do you inform you bring us all together worldwide” – Lorrie, CRPS patient
“Burning Nights are brilliant for all the support they offer. They have helped me find some amazing friends too” – Bex, CRPS patient
“I mentioned you and your fantastic website and how informative it was to my specialist as when I was diagnosed I wasn’t told anything about the condition! I told her without your help and fantastic website I would never have known anything about CRPS. I would just like to say thank you personally to you for everything you and your website do to raise awareness of this awful condition” – Bex, CRPS patient
“Thank you for all of the information you provide. I have had CRPS since adolescence and each day, each step is still a challenge. Thank you for being a voice for us all” – Amy, CRPS patient
“I was diagnosed with CRPS in 2014 after two years of searching for an answer. This is one of the non-profits that has kept me going hundreds of nights over and they probably don’t even know it. The amount of knowledge you can find on their website, to the forums and connections I’ve made through it, has more than saved my life a thousand times than any hospital, doctor or psychiatrist has . . . and I’ve never paid a dime for it” – Sophia, CRPS patient
“I sat with 15 specialists and they still couldn't give me the same information or the same support I have had received from Burning Nights CRPS Support. As a mother I would highlight Burning Nights CRPS Support as anyone's go to for information on this debilitating illness” – Lyndsey, Mother of a CRPS Patient
“The support you show, work you do and awareness you raise for CRPS is incredible and as one out of thousands I am truly grateful” – Emma, CRPS patient
“The work Burning Nights do to help sufferers, families and medical professionals is indescribable compared to any other organisation I have come across. Thank you all for your continuing support and guidance.” – Sue, CRPS patient
“Burning Nights CRPS Support really do make you feel like you’re not alone and just having other people who completely understand your pain and everything that comes along with this awful disease is comforting” – Jen, CRPS patient
“CRPS is a rare condition, but there are a lot of us brought together by the CRPS charity – Burning Nights CRPS Support. I would recommend people to check them out if they haven’t already., They have a website and are on all social media platforms and are just amazing” – Jennifer, CRPS patient
“The man I love suffers from CRPS. Thank you for your advocacy and education. I learned a lot from your site.” – Julie, Partner of a CRPS patient
“Because of you and your support, I have been able tomanage CRPS in both of my legs. You gave me the information I needed to stay firm with my doctors that CRPS does make my legs swell and split open and that they needed to do more!” – Lily, CRPS Patient
“It’s hard, this disease is so isolating but their page and online CRPS support groups helps” – Aedan
“Since knowing about Burning Nights CRPS and seeing what others go through when you are trying to get people to understand without successes lifesaving. I have seen so much helpful information and products that would help. I would like to thank everyone who shares their knowledge” – Sue
“Privileged to be involved with Burning Nights CRPS” – Emma
“You keep us informed and bring us together whilst educating the world on the devastating disease CRPS. Some of us are alive due to you literally. Thank you from the bottom of my heart.” – Lorrie
“This charity’s support is never ending from undiagnosed to wrongly diagnosed, to the end of that painful process to the part, once that’s done seek the legal advice. Why can’t other charities be the same? As always well done and thank you for the work you provide to sufferers.” – Sue
“Finally my wife has found a group of people who are suffering with the same condition as her. It makes a lot of sense when she can see the various treatments and diets and so on to help her. Her condition is spreading very fast now but I love her so.” – Andy, Husband to a CRPS patient
“The help I have had has been invaluable and even the care and support, I feel a part of a family.” – Anon
“Without this charity I would be lost, they have & still provide me with monthly support & I don't feel alone with the people that I have met along the way. A massive thank you to everyone one working very hard at the burning nights” – Anon Response, Impact survey 2020-2021
"Thank You for Being There. It's a relief just to talk to people about the condition who understand the pain I'm going through." – Toni, CRPS Patient
“The woman who runs this charity is amazing. She was one of the first few people who helped guide me through learning about CRPS. She is kind and committed to helping others learn about CRPS and the resources available to them. CRPS can take so much, but Burning Nights is one example of how you can take the power back and make something new. Take a minute and check out her site and read her story” – Anon Supporter via Facebook
“Victoria is a beautiful lady, I have CRPS and her story helps others. She is an inspiration and has set up a big meeting for people in Newcastle for others to meet up and discuss problems etc. and she invited doctors and other professionals. How amazing is that when she has problems of her own? She is highlighting the pain suffering and hell that someone with this condition can go through, and no it is not all in the mind as some may think. Thanks Victoria for being brave” – Angela
“Victoria is one inspirational lady who made me realise I needed to be stronger and I could live a life with CRPS. I will always look up to her I just now need to meet Victoria in person after speaking with her so much I cannot wait for that day.” – Julie
"Thank goodness for her husband who has a heart of gold. Victoria you have the will to live. Good luck.
She has her spouse for support and often all we need is that one person who loves and supports us.
I feel sad for what she experienced. No one ever deserves that drama and trauma.
Victoria, you are an amazing woman. I love your courage and gratitude. May every day hold something special for you and your darling husband!" – Elizabeth McLeod, USA, Chronic Pain Sufferer
"I have been connecting with Victoria Abbott-Fleming and she is ONE AMAZING HUMAN BEING. Not only has long term pain taken away her promising life- she has dedicated the life she has, to helping others with the same condition. I am inspired and humbled by the Path she has chosen to take..." – Tina Petrova, CEO & Founder of Give Pain A Voice (Canada, 19 May 2015)
"Thank you so much for sharing your story Victoria. I am hoping that everyone who reads this story will understand how you are such an inspirational person. You are someone that we all should look up too. How you have been through hell and back 20 time over and you came back through the other end fighting and still continue with life the best way you can." – S. Jackson, CRPS Patient via Facebook
“The service has genuinely changed my life for the better. For the first time since being diagnosed with crps I felt truly listened to and understood. I would recommend to anyone. The amount of counselling is amazing I can't access counselling on the NHS because I'm deemed to difficult and could never afford to pay privately so this has been a god send. My counsellor set me up for life with the skills and understanding she taught me. I can't verbalise how much good the service has done for me.” – AD, CRPS Patient
“[My counsellor] really was amazing! I can’t thank her and Burning Nights enough for the support I have had. There is a long road ahead but I feel I have been given the tools to move forward.” – Anon, CRPS Patient
“I cannot recommend Burning Nights' counselling service enough. When I first began with counselling, I was struggling to come to terms with my diagnosis, I found it difficult to talk about my CRPS in depth and I was very much struggling to get to grips with what CRPS would/will mean for my life to come. However, by the end of my counselling sessions I feel such immense positive changes within myself not just around my CRPS but also with my mental health as a whole, and I have come out with so many tools to help me in the future. Additionally, having a safe space to talk to someone with first hand experience of CRPS who has been so lovely, kind and friendly has been a real blessing for me. Thank you so much for this service Burning Nights.” – YJ, CRPS Patient
“Great, friendly service with good advice and support” – MC, CRPS Patient
“Amazing service, thankyou” – KQ, CRPS Patient
"My counsellor was incredible. She made me feel validated, and she listened intently with advice and guidance. I can't thank her enough" – JL, CRPS Patient
"[My therapist] was so amazing with me and so patient. He has made me realise just how much I actually can do. I wasn't sure at the start if this would help me as I've tried so many different ways before with no avail. I built a fab professional relationship with [my therapist] and even managed to laugh at times.. for me personally he is a credit to the charity and is always able to make me feel at ease. I can't thank him and all of you enough for giving me a slight bit of normality back ❤️" – KQ, CRPS Patient
“My counsellor was amazing and really helped me to find mindfulness helpful and I am trying to use this now. Yes it’s difficult, yes sometimes I still have panic attacks and anxiety, but I am slowly learning how to cope. My mental health is up and down, I’m still struggling, but trying to see positive more than negatives whereas before I only saw negatives…I have had CBT before and that didn’t work but I do believe I have learnt some good lessons and will continue to try use them to help my mental health. I mean being I constant pain has to effect our mental health at some point and I’ve been struggling for over 10 years. But I am grateful for Burning Nights who provided this service free of charge and as they understand what people with CRPS go through it helps to know we are listened too." – GT, CRPS Patient
"A life saver " – MS, CRPS Patient
"I have taken part in counselling and CBT in the past and really struggled to engage in it and really didn't feel I got many long term strategies out of it nor did I feel understood. [My therapist], however, has a very calm and clear way of explaining things. He has been so patient from the start and given me space to feel whatever I am feeling and to work through it. I feel better equipped to deal with my pain and to manage my condition and I feel more confident to implement the strategies with have worked on. With his many metaphors, our exploration of behaviours and thoughts and coping strategies I feel empowered to move forward with my life. I was really struggling when I signed up for the service as I was battling to control something that is not controllable. The last few weeks I've had a bad flare up and I've really noticed the difference in how I've managed and coped with this…I feel more hopeful for my future and for whatever comes my way…I would whole heartedly recommend this service to anyone in need." – RB, CRPS Patient
“The befriending service has given me an outlet to talk to somebody about chronic pain and everything in life that it affects, I thoroughly enjoyed befriending service I would highly recommend it to anybody, Burning Nights CRPS Support it’s a wonderful organisation fight the good fight stop the fires burning at night.” – JM, CRPS Patient
"Had no expectations of befriending, the bar was very low, I was expecting to be let down again but I can’t say enough good things.
Money can't pay for it, invaluable service for people going through hell, lives changed for the better. Best help around speaking to those who get it…In a selfish way people going through it know what you're talking about, don't feel as alone in it all anymore." – Anon, CRPS Patient
“thanks everyone for all the information given me a much better perspective than half hour I had with a Dr and their leaflet” – Anon
“Thank you everyone for allowing me to listen to your experiences. These sessions are hugely important.” – Anon
“Thank you for being there for us, I follow other CRPS accounts and they don’t interact with their followers. You do and it’s so valuable. I believe you deserve an award for your education to CRPS sufferers globally. What a wonderful group of people you really are” – Lorrie
“It’s always a pleasure to recognise, such a dedicated account that helps so many people coming to terms with. Coping with and caring for people with CRPS and other conditions causing crippling pain. Thank you you’re special.” – Anon Supporter via Twitter
“Your replying makes me feel a bit better about what I’m going through and I can’t thank you enough. You are a beacon of light in the darkness for those who suffer” – Julia
“Thank you for your amazing posts! They truly give me more strength to keep fighting this awful beast known as Complex Regional Pain Syndrome, Stage 2. It is spreading more rapid than my doctors and I could have ever imagined!”– Anon, CRPS Patient
“Thank you all so much for your understanding and support. It helps make life more bearable when you know there are like -minded people there for you.” – Anon Supporter via Instagram
“Thank you for replying to one of my tweets and directing me to your site. It’s a great source and very helpful to me.” – Anon Supporter via Twitter
“Your messages when I was at a really low point a few weeks ago got me back on track.” – Jennifer
“I don’t know what I’d do without you guys, sometimes your posts are all I have for support and understanding. Love you!” – Anon
“I wanted to pass along a thank you from my wife and kids. For posting things like this, that help to keep myself and so many others, going. HUGS” – Anon Supporter via Twitter
“…Thanks for the posts to help people understand what we go through. Yall are awesome” – Anon Supporter via Instagram
“Thank you so much to everyone in Burning nights. I’m feel so better with your daily support. I feel that I’m not alone in this fight. I don’t remember how I found us but I am very happy that you very important part of my life. Thank you so much” – Anon Supporter via Instagram
Pet Bandana: “My dog Billy is very pleased and proud with his new CRPS awareness pet bandana. I bought a second one for me which I will sew on the back of my motorcycle jacket” – Paul Garritty (Switzerland, 2 March 2018)
Enamel Badge: “WOO HOO! We love chronicpaincrps.com new enamel badge. Be loud, be proud ~ #GivePainAVoice.” – Tina Petrova, CEO & Founder of Give Pain A Voice (Canada, 19 May 2015)
Wristband: "Burning Nights - CRPS Support Has WRISTBANDS ! Please support this amazing community by following them and liking them. They #GivePainAVoice" – Tina Petrova, CEO & Founder of Give Pain A Voice (Canada, 19 May 2015)
Wristband: "I ordered these from the Burning Nights website, to help them fundraise to become a registered charity. Good prices & quality & great to be able to help raise awareness too. Arrived the day after I ordered! Check out the website, loads of helpful information too." – Susan Brown, UK, CRPS Patient
Enamel Badge / Wristband: "I received my badge and awareness band today. Fantastic products the band is well designed and really stands out and the badge is bigger than I thought. Great products. Thanks" – K. Wright, UK, CRPS Patient
“Fantastic training session last week by Burning Nights CRPS, thank you so much for coming up and giving us things to think about when looking at wheelchair provision for someone with CRPS” – Jenny
“We first met Victoria at the OT Show 2016 whilst she was promoting CRPS Awareness with Burning Nights CRPS Support and soon started chatting about the work to increase CRPS awareness. Victoria is a terrific advocate and passionate about early identification of CRPS, she is taking every opportunity to get the message to the masses.
Enable Therapy Services invited Victoria and Michael to a learning session, her relaxed presentation style to share her knowledge was well received by the OTs. Burning Nights were able to provide lots of promotional materials to remind the OTs of the signs to consider with clients to assist with earlier identification of CRPS.
We enjoyed Victoria’s visit and look forward to seeing her again at the OT Show.”
– Clinical Operations Manager, Enable Therapy Services (Leeds, 9 June 2017)
"I would definitely recommend the CRPS awareness training session to others. It gives a good insight into a complex condition. Victoria gave a really good presentation, expertly delivered - Thank You!”
– Clinical Director, Manchester Neuropathy Centre (8 November 2016)
"I would definitely recommend the CRPS awareness training session! It went over training I had 10 years ago...and gave more updates and raised awareness. I really enjoyed it - made me reflect on my experiences and has given me an idea of where to go if I spot the symptoms on a patient."
– Session for Occupational Therapists and Physiotherapists
"YES! I'd definitely recommend this session to others. I found the presentation very helpful! Presenters' knowledge and experience - excellent!"
"The CRPS awareness session was well presented, good materials shown. Personal experience added appropriate extra emphasis."
"Informal but very well presented and knowledgeable!"
– Comments following CRPS Awareness Session at Royal Oldham Hospital (9 June 2017)
"Excellent knowledge and very informative - should be seen by all primary care practitioners"
"Would DEFINITELY recommend the session! It was a very interesting and informative talk especially as it's presented by a patient from a patient's perspective - Thank You!!!"
"I would definitely recommend the CRPS awareness session to other professionals. It was very enlightening."
"I'd love ALL physio departments to hear this presentation. I would ABSOLUTELY recommend it!”
– Comments following CRPS Awareness Session for Oxfordshire MSK Physio Service (11 January 2018)