RLS and augmentation – the battle for sufficient treatment.

[Gibbel]

A HUGE thank you to everyone who has answered and advised me - both on inquiries regarding switch from pramipexole to pregabalin and experiences of treating RLS with morphine only.

It has been a BIG help - thanks to you, my doctor has for the time being agreed to give me a small dose of morphine while I taper off the pramipexole completely (down to half of the 0.7 mg, so now I got 3 x 0.018 mg.

I now get 1 tbl. Malfin depot a`10 mg (each tablet contains 10 mg morphine sulfate corresponding to 7.5 mg morphine). Contalgin, which I first got, is no longer used in DK. The small dose of Malfin helps a little with the pain in the legs, which is worst in the middle of the night.

But I don't get much sleep, and my doctor overhears this - even though it is the main problem for us with bad RLS and augmentation! She couldn't understand that I hadn't started taking pregabalin – to which I replied that I had to taper off first (isn't that right?)

They say that "The patient is an expert in his own life" - if only we could be allowed to be, because no doctor who has not personally experienced how terrifying a disease RLS can be can understand what we are dealing with. . NONE ! But they are the ones with the prescription pad. And even though the patient is 83 years old, she would hate to become an addict - even though death must have a cause :-).

The hope that my iron will continue to rise and that it might help down the road keeps me going. It is going slowly, but the right way and in 11 weeks Ferritin;P has risen from below 10 to 36 and Iron;P from 9 to 17.

It also keeps the courage up, knowing that you are not alone in the world with RLS!!

So THANK YOU to all of you!

Gibble

[Cookiebum24]

well done for getting this far.

I have recently come of Pramipexole and had the same battle with my GP…..too afraid to give opiates for fear of dependence despite the fact that they happily prescribe dopamines which in my opinion, are far worse!

I am now waiting to see a private neurologist to hopefully get Buprenorphine. I will happily take it for the rest of my life if it means I get sleep. Trying to hold down a full time job on a few hours broken sleep every night is a nightmare but apparently not a concern for our GP’s.

Good luck.