New, recently diagnosed

[Monty321]

Hello, I’ve just joined as I wanted tips etc on dealing with RLS. I’ve beem to my doctors many times over the years with a prickling crawling sensations in my feet that drive me mad and keep me awake at night, eventually I was given amytryptaline for nerve pain which seemed to help me sleep if nothing else, then due a range of other symptoms I was referred to a neurologist to rule out MS.

I was diagnosed with RLS as well as carpal tunnel syndrome and he wrote to my doctor to stop Amytryptaline and start on Ropinirole 0.25 and to keep a sleep diary for 3 months.

What are people’s experiences with Ropinirole? The side effects list looks a bit scary!

[Joolsg]

Amitriptyline is poison for 95% of people with RLS. It makes it much worse.

Did the neurologist order Full Blood Count tests? Raising serum ferritin above 100 and serum iron above 60 can relieve RLS in 50% of sufferers so I would definitely go down that route before trying Dopamine Agonists like Ropinirole.

The reason I say that is because one of the leading experts on RLS- Dr Buchfuhrer in the USA, believes dopamine agonists permanently damage the dopamine receptors which means you may end up on meds for the rest of your life. I agree with him. I was on a high dose of Ropinirole for 15 years and suffered horrendous augmentation and a terrible withdrawal and despite getting off Ropinirole and being on low dose opioids and pregabalin for the last 3 years, I still have RLS 2 or 3 times a night.

I wish I had never touched dopamine agonists.

However, the latest view is that you should start on the lowest possible dose ( your neurologist has done this) and if it stops working, don’t increase the dose, but consider switching to pregabalin, Gabapentin or low dose opioids.

Raising your serum ferritin and iron should help avoid augmentation on Ropinirole so do ask for the tests and get the actual numbers.

[Monty321]

Hi Guitar bear, thank you for replying!

Have you been diagnosed for long?

Do your meds help?