Your Guide to Navigating Our Helplines, Support Services and Social Media

If you or someone you care for lives with Complex Regional Pain Syndrome (CRPS), you are not entirely alone in facing your difficult moments. Thousands in the UK and around the world are battling the condition, which means there are people amongst us who are more than willing to jump onto a chat service to speak through your concerns and anxieties.

Burning Nights CRPS offers support in a range of ways to patients and their loved ones, though we understand that not everyone knows their way around our helplines and chat services and what each offers. Our services are easy to access online or via telephone and mobile, so do take advantage of the charity’s full range of communications. Although, please note we are unable to provide crisis support or advice related to medical treatment, legal matters or benefits.

Read on for all the ways to get help from us:

If you prefer speaking over the phone, call 01663 795055 to talk to our team including volunteers with lived experience of CRPS. All conversations are confidential and no information is shared with third parties, unless:

1. The charity is required to do so by law

2. There’s a legitimate safeguarding concern or a potential risk of harm to the caller or others.

Calls to this number are not recorded and can be made between 10am to 4pm on weekdays, though availability may vary.

Our helpline is unable to offer crisis support. For urgent help, please call Samaritans UK on their 24-hour number which is 116 123 instead.

This free and confidential service is for when you would rather use online messaging. Patients and carers can gain a greater understanding of the medical and social aspects of life with the condition from our friendly and approachable trained volunteers who all have lived experience with CRPS. They can share useful information and support, such as how to live life after a CRPS diagnosis. The volunteers also discuss how to be referred to pain clinic hospitals that offer specific CRPS-related treatments, and which pain clinics are CRPS specialist centres. 

During busy periods, you may not always receive an immediate response when entering queries into the website’s chat function or ‘speech bubble’. But hold on, when a volunteer is free, they will chat with you.

Live Web Chat opens from 11am and closes at 6pm on weekdays. On Saturdays, the chat is open between 12pm and 4pm. The days and times listed exclude bank holidays, when both the helpline and live chat service are closed. 

Should you feel more comfortable emailing the charity, simply contact support@burningnightscrps.org, and allow up to a week to receive a response. Our lived- experience volunteers are able to answer most queries from anyone, not only in the UK, but worldwide.

Burning Nights CRPS Support can be found across various platforms including Facebook, Pinterest, YouTube, LinkedIn, X, TikTok  and Instagram. Handles for the charity’s accounts are below. Check them out for useful information, anecdotes, the daily thought of the day and tips, as well as to connect with others affected by CRPS. Remember you can direct message us with your CRPS thoughts, questions, concerns and queries too!

Additionally, if you care for or are a parent or guardian of a young person with CRPS, head to our private Facebook group to connect with around 1,500 others, who are likely navigating similar experiences to yours.

If social media’s not your thing, our Online Community Forum offers another alternative for help, peer support and information. And all you need is an email address to create a forum account. 

Though monitored by our volunteer moderators, those joining the forum are encouraged to speak with each other. Unless you have a query about Burning Nights CRPS, in which case get in touch with the charity directly.  

When you’re looking to combat the loneliness and isolation that may result from the challenges of managing your symptoms, our Befriending Service – which is not counselling – is a great recourse. 

Our trained lived-experience volunteers can either speak to you over a weekly phone call or Zoom meeting for 12 weeks. To sign up for this service you must:

• Be over 16 (if younger, you’ll need permission from a parent or guardian)
• Have your own landline or mobile phone (should you choose a call)
• Can hear and be understood over the phone (should you choose a call)
• Have access to a quiet area or space for the call or Zoom chat
• Can commit to a regular call or Zoom chat each week (for up to 12 weeks)
• Live in the United Kingdom
• Either have CRPS or be a family member, parent, spouse or caregiver of a person affected by CRPS.

Whilst our charity is currently dealing with a high number of registration forms for the Befriending Service, we still ask that you complete the form for access to this service. 

Our counselling and therapy service offers weekly one-to-one sessions via Zoom or over the phone. Over 12s get up to 20 one-hour sessions in which to talk about their experience of CRPS or anything they feel the need to discuss, in a supportive environment with no judgement. 

The qualified volunteer therapy team are each insured, as well as being registered with a professional organisation, such as the  British Association for Counselling and Psychotherapy (BACP).

As an organisation we follow BACP guidance on online therapy. This means our Clinical Lead will first assess you to make sure this is the right option for you and will confirm if it is. 

Please click here should you wish to sign up for therapy and counselling, or here if you are searching for a volunteer placement as a counsellor or psychotherapist. 

Our support groups give you the chance to connect with others,  reduce isolation, hear from those living with CRPS about their experiences and receive emotional support. You can also learn about CRPS coping mechanisms. 

Held on a different date each month, find out more about upcoming Zoom events.

Online meetings have been held since Covid, and were held in-person at locations across England, such as the capital, Manchester, Bath and Bristol, before this. This service is open to people worldwide. 

Although hugely helpful to many, our online peer support groups cannot solve all issues and they don’t replace the services and care from healthcare professionals and pain specialists. 

Let us know if you’re interested in joining an online support group – we need around 5 to 10 people to take part for the group to run.

Links to a full range of support services mentioned above are listed here:

Helpline: https://www.burningnightscrps.org/helpline/

Live Chat Service: https://www.burningnightscrps.org/live-chat-support/

Email https://www.burningnightscrps.org/support/for-patients/support-by-email/

Support on Social Media: support-on-social-media

Online Community Forum: https://www.burningnightscrps.org/support/online-community-forum/

Virtual Befriending Service: https://www.burningnightscrps.org/support/for-patients/befriending-service/

Counselling & Therapy Service: https://www.burningnightscrps.org/support/for-patients/crps-counselling-service/

Online Support Groups: https://www.burningnightscrps.org/support/for-patients/online-support-groups/

Worldwide Crisis Support Helplines: https://www.burningnightscrps.org/support/for-patients/support/for-patients/worldwide-crisis-support-helplines/