Our son gets leg and foot pain in bed which is relieved by Calpol and hot water bottles, could this be connected to problems in the lymphatics?
Lymphoedema is not usually painful – you may get a bit of discomfort particularly if you’re on your feet all the time, but as a general rule it’s not going to cause pain so if there’s no swelling, it’s just pain so I don’t think so. We do get quite a number of children who seem to get joint pains in the teenage years and we’ve often puzzled about that. There are various theories but it doesn’t seem to be progressive and damaging arthritis and it does seem to improve with time and to be resolved with local treatments and with things like Calpol and paracetamol. At the American meeting in Seattle in July, support groups – CFC, Costello, NS – made presentations and all raised this issue of pain so I think it’s very common across the pathway and I think it’s very poorly understood but an American research group has recently got a small amount of funding to start looking at it.
Question asked and answered at our family’s day 2015