Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Chronic Pain and Sleep Study

2020-03-12

Participants wanted for a chronic pain and sleep research study

Everyone experiences a bad night’s sleep occasionally, and we recognise the consequences of this the next day. Feeling groggy or irritable, low in mood and less alert overall. Most of the time, our bodies are able to recover the next night with little issue and no long-term impact. Sleep is an essential pillar of our health, and even though its role is not fully understood by researchers and scientists, we all know how restorative a good night’s sleep is!

For some people with chronic illnesses however, the issue of sleep can have a huge impact on the management of long term conditions, and equally, research has shown that individuals who have disturbed sleep over long periods of time are at higher risk of developing certain illnesses over time. We call this interaction a bi-directional relationship. We know this interaction occurs regularly in people with chronic pain conditions; in that persistent pain can easily disrupt sleep over long periods, and research has also shown that disturbed sleep may also heighten pain experience.

The new SCRIP study, being conducted at University College London’s Lifespan Learning and Sleep Laboratory, led by doctoral researcher Zoe Zambelli is trying to understand what advice and services people with chronic pain are accessing regarding sleep management as well as pain management.

Chronic Pain and sleep study participants needed

There are many excellent pain management programmes and effective treatment pathways, but often sleep disturbances among these individuals are overlooked and not promptly addressed. Therefore, there is an opportunity to not only unravel the relationship between sleep and pain further, but to understand from individuals themselves how to improve services so that sleep issues are addressed at an earlier stage, before they become problematic.

At present we are calling for adults living with any non-cancer chronic pain to participate in the first phase of research: an online survey which asks about access to treatment and services, as well as general wellbeing. If you fit this criteria and would like to be involved, you can access the survey via this link: https://uclioe.eu.qualtrics.com/jfe/form/SV_8ekwsc5TwLdS8ct.

You may also wish to visit the webpage: www.lilaslab.com/SCRIPstudy or contact the research directly if you have any questions or comments zoe.zambelli.18@ucl.ac.uk. This research project has been granted ethical approval by the UCL IOE Ethics Committee.

About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Albawanderer3296

    Hi there, My name is Mike and I would dearly like to be considered for this study, though I have one issue and that Is that I live in the Edinburgh area of Scotland.
    Besides having CRPS , I also have DVT’s , Veinous Leg Ulcers, Post Thrombotic Syndrome, Chronic Fatigue Syndrome and Post Traumatic Stress Disorder. The conditions that I mentioned occurred in 1986-1987, I always mix the two up. But the one condition that occurred about 5-6 years later was the Chronic Fatigue Syndrome.
    And when I was born I was born with Epilepsy and very mild Cerebral Palsy. The CRPS has ruined the last 34 years of my life; at the time I was in the Royal Observer Corps and I was a disabled athlete for Scotland, both of these were snatched out of my life very quickly.
    Because of the pain I feel that the doctors need to amputate my left leg, and if they do that it needs to be taken from the hip. I’m also waiting to hear about a spinal cord stimulator.
    I’m aware that if the doctors refuse to help me by taking this leg off then I will make more of a concerted effort to end my life because I truly cannot cope with the level of pain that I’m going through each day. I’m certain that the coating of the nerves have been stripped and that is why I’m suffering so very badly.
    Thanks for listening to me.

    With Kind Regards.

    Mike Rose.

    You can contact me through Email or telephone
    My Email is:- splintermanrose@yahoo.co.uk

    My telephone number (landline) :-01312833320
    My mobile number is:- 07719181672 or. 07864741490

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