Restless Legs Syndrome (RLS) Discussion Board

Pancake_muncher wrote: ↑

Wed Aug 19, 2020 8:37 pm

badnights wrote: ↑

Tue Aug 18, 2020 5:03 am

pancake, I am still worried about the sudden onset of your WED/RLS, and the possibility of internal bleeding. Did your doctor rule that out?

It finally clicked.I had to give blood to my brother after his operation. I had to because there was a complication and he lost some blood and I am an universal donor.It happened around the time my RLS got worse.Maybe 3 days before.And it now starts at 9 pm. and is 50% of its previous intensity.

YES! Many of us stopped giving blood because of this. This is great news.

I am so relieved. Bear with it, keep taking iron, and it will get better. Don't give blood again unless it's similarly urgent and you're sure no one else can do it. Meanwhile, take some sick leave from work , if you work, and sleep whenever you can during the day. When the symptoms are bad at night, you can sit on a ball to watch TV or stand at the counter to read a book, or do all your house-cleaning in the evening, or otherwise accept the situation as a temporary inconvenience.

Polar bear, you say you were on too high a dose of Ropinerole and had started to augment. How high a dose?

I was taking 5mg spread over 24 hours. I had been on ropinerole for many years, about 16 years, starting when the daily dose of 4mg as indicated by the manufacturer was acceptable.
Nowadays the expert RLS consultants consider that 1mg is tops to try and avoid augmentation.
With great trepidation I weaned myself off very gently over 10 months and did it without major issue, using codeine and pregabalin for support. It would have been possible to have weaned off much quicker but gently and slowly suited me.