Mums legs have started again after 2 years off an we are at our wits end. Mum is 85 and has had RLS on and off for about 12 years. We thought we had cracked it. Weened her off the Anti D's and it went away. Now when she is even more frail than before it comes back. Mum has Advanced Macular degeneration (almost blind) a knee so bad they will not operate on it. Dead feet from Diabetes. A crumbling coccyx (base of spine) Oh and her kidneys are packing up due to the Metformin for the Diabetes. She can barely shuffle around but RLS does not care, it is the most evil of diseases. I think our problem was to change her drug cocktail. We changed it on doctors advice that she needed to come off Metformin and reduce her Glickazide because they are damaging her kidneys. She started on a new form of Diabetes drug as well. It is a trial and if it worked she would avoid having to have Insulin injections.
So going back to the Doctors (when we can actually get an appointment) and I think our best bet is to return to whatever drug cocktail she was on 3 months ago when her legs were good. I always have to lead the Doctors when it comes to RLS because they are merely aware of it. No one can truly understand unless they have it or have lived with it. I know that mum would rather expire from Kidney disease than suffer another night of RLS.
If anyone had ever died due to RLS and had it put on their death certificate then perhaps the drugs companies would take notice. I would like to know how many people died or had their lives shortened by having RLS as a secondary cause of death, probably none also.