Hi Caringheart,
I have Myelofibrosis too and have never had joint swelling although I do occasionally have joint pain. It must be difficult not to be able to communicate with your mother regarding her symptoms. I can tell you some of mine though which might be able to assist you with hers. I can quite understand her wearing her PJ's around her hips as any pressure around her waist would be very painful. I find that by the end of the day, I can't have any pressure at all on the spleen and liver area as they become very painful. She is probably also having a lot of pain in her long bones, in both arms and legs and the shoulders seem to be greatly affected as well. I find it difficult to wear bras for long periods as the rib area also becomes painful. You sound fabulous and very caring. I think at the end of the day, nobody can really understand this awful disease unless you have experienced it in some way. Just keep loving your Mom, that is the best gift you can give her. I know that the love I receive from people around me helps me a lot. Take care
Madelon