JUNE 2019 - New Members

[Rustsmith]

Friday, June 28

Welcome to

jds, who has had symptomsof RLS for in excess of 10 years and is now 48. jds also has polyneuropathy, PLMD and some additional movement problem. Cause of each is idyopathic and symptoms cotinually worsen. It has drastically affected jds's quality of life.

Please post a note telling us a bit about what you are doing to manage your RLS and PLMD (which are related) so that we can offer you some suggestions to discuss with your doctor.

[Rustsmith]

Saturday, June 29

Welcome to

JoyB, whose RLS rules her life. She has had RLS for about 50 years. Without medication she cant stay still long enough to visit the doctor, have a hair cut, ride in a bus, sit to eat dinner. Sleeping was the first casualty. This affected her marriage. They loved each other until the day he died, but they couldn't share a bed or even a room. Her restlessness kept him awake and he needed to sleep to be able to work. Most nights she wandered until about 4am. In the weeks after his death, she was offered Sinamet. For the first time in years she was able to go to bed and sleep, she just wishes she could have been given it while he was alive, but it did help her to cope. Today, she is in her 70s and its 20 years since she was first given Sinamet. She has been in hospital this week and while there she was told to stop the Sinamet.

Why did they tell you to stop and was it your doctor or another one? Did they suggest something else for your RLS? Did they explain how difficult stopping Sinemet will be after all these years? FInally, many doctors do not know how to treat RLS.

[Rustsmith]

Sunday, June 30

Welcome to

gfischer4, who feels hopeless... RLS in early evening.. till bedtime.

Please post a note telling us what you are doing to manage your symptoms so that we can help you out.

[Rustsmith]

Sunday, June 30

Welcome to

Tinabuglaw, whose RLS causes severe sleep deprivation along with completely tortuous feeling mostly in her legs but sometimes even in her hips arms and shoulders. It's so bad sometimes she just wants to commit suicide. She recently was prescribed methadone 5mg which seems like a miracle no high, no side effects just complete relief from her restless legs first time in 30 years!

Welcome to the group. Please feel free to post a note with any questions that you have.

[Rustsmith]

Sunday, June 30

Welcome to

Rlslibrarian, who has suffered with RLS for over 45 yeas. She has been to numerous doctors and has taken most all classes of drugs with no long term relief. She is looking for help.

Please post a note giving us an idea of what medications you have tried so that we can try to suggest something else that could work.