Suffering from chronic pain conditions can be incredibly difficult depending on the severity of the condition, and poor understanding on the subject means that complex regional pain syndrome sufferers don’t necessarily have access to the resources that a person needs to live as well as possible.
CRPS is a condition that causes intense pain in a limb and usually occurs after an accident. The exact triggers are unknown and as a result there are limited options for treatment; while the condition can sometimes improve on its own, it can also persist throughout a person’s life. The nature of the condition varies from person to person but there are still many roadblocks to be navigated.
Thankfully the internet has allowed for new opportunities to open up. One of the earliest features of the internet was the forum, and whilst the internet has drastically advanced to allow for all kinds of formats, sometimes all that people really need is a safe space in which they can share their feelings, express their fears and seek out the experiences of others with the same condition.
Such resources can be hugely beneficial to someone with a condition like CRPS for a variety of reasons. For one, they can easily access information on the internet, giving them the ability to learn more about their condition such as the stages of CRPS, options for treatment and contact information for local support groups if applicable. The following are just some of the online resources available for easy access.
- Burning Nights
Burning Nights is a British website run by Victoria Abbot-Fleming, a CRPS activist that started the site after developing the condition after an accident at work. The site has a forum where people can discuss the subject of their condition but also provides plenty of information, helping users to understand the stages of complex regional pain syndrome and buy awareness products from car stickers to med-alert USB sticks to be used when on the move.
- CRPS Clinical Research Network UK
This site is a great resource for CRPS sufferers. It provides a registry that you can enter your details into, and was first created in order to facilitate studies and pharmaceutical trials for future treatments. The primary aim of the site is to raise awareness and understanding of the condition in the medical community and society at large; they frequently hold seminars and events, including a national conference offering support to sufferers, friends and family.
CRPS is also known as RSDSA, which stands for reflex sympathetic dystrophy syndrome. The Reflex Sympathetic Dystrophy Syndrome Association is an organisation dedicated to encouraging research into practical treatments for CRPS through investments and funding to other organisations. The site is packed full of information, including a list of resources linking people to organisations across the globe, support groups and more.
It’s vital that people with conditions like CRPS don’t feel that they’re alone or without help. Resources like the ones available online have given CRPS sufferers the chance to open up their world and meet likeminded people with whom they can share their experiences. It’s easy enough to locate a CRPS forum online, why not start today?