Dr Paul Rolfe 2023-08-08 Person 5 5 0

Dr Rolfe saw my 15yr old daughter who suffers with chronic widespread pain in May 2023. She was first diagnosed in May 2020 over the phone during covid with CRPS as a result of either a foot operation (Sept 2019) or prolonged pain cause by a distal femoral stress fracture that was not detected for 3 months (Sept 2019 - Jan 2020) Either way the diagnosis of CRPS from Dr Hans de Graaf at University Hospital Southampton did not sit well with Dr Rolfe who listened to her initial symptoms and said that the condition she is most likely suffering from is either primary or secondary erythromelagia. This made a l lot more sense to us as her pain is neuropathic and in both hands and feet and face and back. He has suggested a genetic blood test but if this is negative it is still likely to be secondary presentation. At least now we have a name for her pain and confirmation that ambient temperature and exercise do cause a worsening of symptoms. Pregablin takes the edge off her pain and she would not be functioning as well 3 years on without it, the gym twice a week and a home education as mainstream school was too demanding and not giving her a chance to manage her pain.