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This is a community for people with chronic pain and those who are part of the care network. The community has been set up as a safe space for individuals to discuss their personal journeys, how their daily lives have been impacted, the variety of stigmas associated with chronic pain, and various strategies that have helped, or not helped. The symptoms vary by individual and are experienced as a mixture of both physical and psychological presentations. It mustn't be forgotten that while it impacts the individual it can also impact the relationships those individuals are maintaining and developing. It is essential to have a multitude of voices and clinicians will provide their perspectives around the management and treatment options that they provide. A few topics coming are: The Pain Scale, How to make visits to our doctor productive, General Chronic Pain information, Relationships, Brain Injury (TBI), Dystonia, RSD/CRPS, Spasticity, and the stress on your body/mind can also cause pain. Controlling pain with a Pain Pump and the experience of a NeuroStimulator. Alternative pain relief that might help and work our way to to the Pump. Please be respectful when joining this community.
This community focuses on a condition called Charles Bonnet Syndrome which causes vivid and silent visual hallucinations after sight loss. This is a condition which can develop in someone of any age – children too – who has lost over 60% of sight. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying. It is not a mental health condition, but caused entirely by loss of sight. Not everyone with sight loss develops CBS but, for those who do, the condition can be distressing and debilitating – not least because it may be confused, mistakenly, with the onset of a mental health condition. Far too many people who develop CBS have received no warning about the condition and, consequently, confide in no one. Professor Dominic ffytche (King’s College London), who is medical adviser to Esme’s Umbrella, explains “From the moment we open our eyes, the nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain. If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but, rather, to increase the cells firing and it is this increase that causes visual hallucinations”