Following the advisory note from NICE yesterday on chronic primary or secondary pain sufferers and their pain management I felt compelled to respond. Many sufferers and I, with the primary pain label, are metaphorically 'banging our heads' at the injustice of not being believed, yet again.
For many sufferers with medically unexplained symptoms under Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders and other conditions/disorders often go undiagnosed. This is because symptoms are complex, do not seem joined up or present in a usual medical explained way. Medical practitioners are not trained to recognise conditions such as ours and thus we would be considered as chronic primary pain patients rather than chronic secondary pain sufferers. Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders are considered rare by NICE, but I would argue the most common presented type hEDS HSD are rarely diagnosed due to lack of knowledge, understanding and even interest.
Many are told or insinuated to be hypervigilant, hysterical or just ignored. This leads to patients either giving up or finding their own way forward. Even if we are believed the tests provided, i.e. X-rays or MRIs often might find some small damage if any, but it does not tell the whole story and often we are sent away saying they can’t see anything wrong. We are taught to believe what we are told in the main by professionals who mean well, but the training is lacking in these areas.
As Professor Rodney Grahame states “No other condition in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome”. So, denying primary pain sufferers pain medication (albeit managed) because it is considered primary and not secondary chronic pain, I would argue is discriminatory on the grounds of our conditions not being believed. I believe an eclectic range of approaches to pain medication are necessary, which includes some primary and secondary approaches for all
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