Hi everyone,

My name is Zara and I am part of a care team looking after a lady with HD, and for the past six months her life has been blighted by recurring pain in her arm. She had a shoulder scan and that showed nothing, and we have been working our way through every painkiller imaginable to try and tackle it with limited effect. We have moved onto the morphine now, but as well as tackling the pain, we want to find the root cause as we don't want her to be permanently on painkillers. The morphine can also make her quite drowsy which isn't ideal.

We have contacted GPs, the hospital and physiotherapists, and all are unable to precisely say what the cause of the arm pain is. They suspect posture - sitting back in one position for prolonged periods of time, but that might not be it. At one stage, we suspected dystonia, but health professionals have said that it's not that.

The onset of her pain appears to coincide with the hand clenching that is common in HD - with the fingers together and the hands pointing inwards. However this may be a coincidence and nothing more.

I was just wondering if anybody knows what the cause of this arm pain could be, or if anybody has experienced chronic arm, shoulder or bicep pain in HD?

Thank you very much for reading this, any advice would be greatly appreciated.

Zara