New to group

[Robbosara]

Hi I just wanted to introduce myself to the group. My name is Sara and I suffer with restless leg syndrome and I also have polycystic ovarie syndrome (pcos) I am writing this post at 3.56 am as I can't sleep due to my restless leg . I take pramipexole 2x35 mg in the afternoon and 1 x 18mg at night, sometimes I am fine aslong as I don't take my dose to late but other times I get problems and I am tossing and turning or having to walk about at night. I think my iron is low so I need to sort that out. Anyway that's the basics.

[Joolsg]

Hi Robbosara,

Welcome. Like you I can't sleep and it's 4.40 am. I'm having severe reactions to oxycontin (anxiety/panic attacks/twitching/shivering/confusion/memory loss). How long have you been on pramipexole? Are you on any other meds which might make the RLS worse? You should definitely get your serum ferritin levels checked.

I hope you manage to doze a little before sunrise.

take care,

Jools

[Jeanniebeannie]

Hi i too take pramipexole and also prefablin together. And as i work all week im not too bad at night .but at weekends my life can be hell and i pace the floor at night till my rls stops in my arms too at times. But if i dont keep busy i kno im in for it . So do sympathise pacing the floor when the world is asleep in no joke.

[Jeanniebeannie]

People keep going on about iron levels .my iron is fine as doc said tho has given me more which i do take . So not always the awnser .

[DicCarlson in reply to Jeanniebeannie]

Docs said my iron was fine at 49. Finally found Johns Hopkins Neurology Dept. website... "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulphate twice a day on an empty stomach) on average improved RLS symptom after 3 months." It eliminated RLS symptoms in me, almost immediately. Ferrous Bisglycinate 18mg/daily. hopkinsmedicine.org/neurolo...

[Capricorn66 in reply to Jeanniebeannie]

Hi Jeaniebeanie , I have a problem with iron. My Dr has taken bloods some months ago & found me needing iron, so went on tablets / tried 2 sorts then he did another blood test & it showed I can't absorb iron so pointless my taking it. So taking iron won't be of any help, & I'm not a lover of iron rich foods ie liver, but green veg I have often.

As I'm due a visit to Drs I have written some ideas of everyone & from the rls site.

Thanks to all of you I now know I'm not alone with the jiggles. I love that word it says it all!

[Madlegs1]

Welcome. And sorry for your plight.

Firstly your Pramipexol dose is way too high for rls. As I compute it you are on almost .9mg (allowing for misplaced decimal points) --- .25 should be max for rls. After that you are into Parkinsons territory. 😨

If you have been on this dose for longer than a few months- or have increased it due to increasing rls- then you are experiencing augmentation (use search facilty above)

Depending on what other medicines you are on , this needs to be addressed.

Come back on here for more advice if my description sounds scarily familiar.

Good luck.

[Kaarina Administrator]

Robbosara

If you do not know much about augmentation this link may be of help to you:

sleepreviewmag.com/2015/02/...

[Tara1974]

Hi Sara I know how you feel I take 3 0.18mg at night which are a god send if taken in time but as with fibromyalgia my memory isn't to clever so I rely on my daughter to make sure I've taken them.

I find because I take amitriptyline as welll for inflammation it does sometimes over ride the pramipexole which isn't good then I'm in the bath several times, walking about and when your so tired and just want to sleep it's a nightmare .

There does seem to be a lot of people who suffer with rls and it's an illness I wouldn't wish on my worst enemy its horrible ..Tara

[Tara1974]

My iron level is ok but my vitamin D is low again due to FM it seems like theres one thing after another at the moment

[Pippins2]

Tara you would do much better with your RLS without the Amitriptyline .It is poison to most of us

Is there another med you could replace it with?

Pipps x