Answer Summary

Members connected over the challenging experience of restless leg syndrome alongside polycythemia vera, with many sharing that magnesium... Read more

Members connected over the challenging experience of restless leg syndrome alongside polycythemia vera, with many sharing that magnesium supplements (often 1000mg daily) and vitamin B1 (thiamine) have provided significant relief, while others found prescription medications like pramipexole, tizanidine, or gabapentin helpful though not always fully effective. Several members described the overlapping pain of erythromelalgia, characterized by severe burning sensations from feet to knees that makes even sheets unbearable, with some finding temporary relief through walking, cold packs, or topical lotions with mint and cinnamon. A recurring theme was the importance of distinguishing between MPN-related symptoms and separate neuropathy issues, with strong encouragement to seek thorough neurological assessments and consider consulting an MPN specialist when symptoms worsen or standard treatments fall short.