Hi ya,I have suffered with restless legs since I was a child,my whole family suffer with it!!
Did anyone watch the channel 5 program tonight? I found it so upsetting to see these poor people & the people around them in so much distress!! It did answer the question as to why my short term memory is so bad!
I tried to email channel 5 but it said the address is not correct 🤦♀️🤷♀️,I really wanted to reach out to these people especially Seema as she lives very near to me!! I hope the rls company/community can get my message to them!!
PLEASE try Ropinirole,it is amazing after 20 minutes it is completely gone!!
Debs x
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Debsmullins6
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I fear many people on then c5 programme were already on ropinirole and it was working against them. Be very very careful and make sure you don’t increase the dose above 1mg.
If you search augmentation on here you will read about other people’s experiences and it isn’t nice. I hope it continues to work for you for a long time but educate yourself just in case -
Great to hear that it worked. It does work. I started on Pramipexole, another dopamine agonist, years ago. It was absolutely brilliant. First night I took it, instant success, first proper night's sleep for months. No wierd feelings in my legs.I
Then, it didn't work so well. No problem just increased the dose, as advised. Soon got to maximum dose which I took for about 10 years.
It's now causing me more harm than good. Now movements are involuntary, affecting arms and shoulders, not just legs, any time of day, chronic insomnia. All caused by the dopamine agonist.
This, as Pam identifies, is called augmentation.
I've read this only happens to 10 to 12% of folks taking dopamine agonists. I don't know how realistic that is. I've actually had augmentation for years without knowing what it was. Maybe a lot of folks never complain about it like I didn't.
So I suggest you stay in as low a dose as possible and it continues to work for you indefinitely. It may do, but just in case I suggest you read up about augmentation and how to detect it and deal with it before it gets too bad.
I think it's true what you say - many people have no idea what augmentation is and are probably suffering it without realising. Unfortunately many doctors don't know what it is either. From the amount of comments on here about it I would guess the rate is much higher than 12%. It is only now gaining recognition but there is a long way to go yet I'm afraid.
GPs vary. One GP once told me that the pain I was having didn't exist. Another told me that you don't get withdrawal symptoms when you stop taking an SSRI.
At least this doctor admitted her ignorance. She recommended I see a neurologist (again) but said it would be best to see one privately, it would take months to see an NHS one. Either way, there would be no guarantee that the neurolgist would be that knowledgeable about RLS anyway, so not bothering.
I've had two really good doctors in the last 10 years. Good that they listened, accepted that I was relatively well informed (rather than being threatened by it) and were willing to negotiate a plan with me. Unfortunately one became chronically ill and had to retire, the other got promoted. Have to find another good doctor and train them up!
Finally, when I told one doctor that my pulse went down to 54 beats per minute, he said that's impossible, you'd be dead
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finally got it sorted i hope
I hope no one has RLS for as long as I've had it.
Hope this post helps someone new to RLS
Help me I have an extreme case of RLS
THERE IS HOPE!
