Relief for me

[Shaunygee]

Hi all, joined this group a couple of days ago and I've spent hours reading all the really helpful and informative posts. I've had RLS for years but it became unbearable around 5 years ago so I went to see my GP. I was prescribed ropinerol and it was absolutely amazing, I started sleeping again and not feeling like one of the walking dead. I've had to up the dose so that I take 1mg around 6pm, so I can sit and watch a bit of tv without being kicking my partner off the setee (sometimes I have spasms or jerks in my legs/arms), and 1mg at bedtime but the effect is definitely wearing off and I think augmentation is starting to kick in. Anyway, I'll stop waffling and say what helps me. It sounds a bit weird, but without fail, my partner lightly tickling my back with her nails almost immediately stops my RLS (sometimes for hours). I'm guessing that the sensation interrupts the nerve signals somehow? If you've got an understanding partner you should give it a try.. as with anything to do with RLS it's worth a try. Oh, and Hi to everyone 😀

[Madlegs1]

I love it- and I know Raffs will as well!😆

Thanks.

[Hidden in reply to Madlegs1]

I still think if my wife licked my whole body every evening that my RLS will be much more manageable. Maybe if i start with tickling..........

[Madlegs1 in reply to Hidden]

Would you try paintin your bodywith White Belgian chocolate - never fails for me! 😂😝

[Hidden in reply to Madlegs1]

Funny you mention that, I did try it once. Unfortunately it was the day my wife realised she was diabetic

[Madlegs1 in reply to Hidden]

Yeah- sugar free chocolate isn't up to much! 😆

[Hidden in reply to Madlegs1]

And sandwich paste is very filling

[Hidden in reply to Hidden]

I think you two should be renamed The chuckle brothers.

[Hidden in reply to Hidden]

Is that Big Ian and Martin! Don't know which of those I'd like to be!

Mind you it could have been worse - you could have compared us to those other comedians Bush & Blair

[Madlegs1 in reply to Hidden]

Or Trump and May?

[Hidden in reply to Madlegs1]

I'll be May, I've great legs for a skirt, (and as my wife says - a great head for a balaclava ).

[Hidden in reply to Hidden]

I didnt say Morcombe and Wise cause your not in their league yet.

[Hidden in reply to Hidden]

I don't know, I've seen some wise posts from Madlegs1 and I'll not explain why I'd like to be more come

[Hidden in reply to Hidden]

Bad boy. !!

[marsha2306 in reply to Hidden]

Hahahahaha

[Madlegs1]

And back to the poor OP - I expect they will never post again!!!

Shaunygee- what do you plan to do about the Augmentation?

[Shaunygee in reply to Madlegs1]

Sorry, just back from the shop with whipped cream, dark chocolate and syrup. I'm not sure what to do about the augmentation or what the choices are. I've heard lots of bad stuff about coming off dopamine agonists though.

[Madlegs1 in reply to Shaunygee]

Just do a search here and educate yourself! The sooner you face up to it, the easier it will be.

Cheers.

[Sleepless1950 in reply to Madlegs1]

I came off Mirapex after 20 years.

It was still working but I was worried about long term side effects. It was tough going off but my Dr. put me on Hydromorphone. 6mg at 7pm.

It works like a charm but now I am worried about taking a narcotic the rest of my life.

My Dr. thinks I should go back on the Mirapex. I don't know what to do!

Please help. I am so confused!

Sleepless1950

[Madlegs1 in reply to Sleepless1950]

Hi Sleepless. First- why did you come mirapex originally? If you weren't suffering augmentation, then it would be ok to go back on it. Starting at the lowest dose and titrating up very gradually to a level that gives relief- but not more than .25mg.

I dont know about hydromorphone but low dose opiates are a perfectly good medication for rls.

The world expert on rls is happy with opiates of upto 20mg oxycontin for long term use 20years plus.

Hope this clears up some of the confusion.

Do come back if any further questions.

Cheers.

[Kaarina Administrator]

sleepreviewmag.com/2015/02/... This is a good link regarding augmentation

[Kaarina Administrator]

This is a posting written by Pippins2 on Augmentation, a few days ago, which I am sure you will find helpful.

Augmentation is something that comes up every day on RLS groups so to save me repeating myself over and over I am putting up this post for information

Augmentation is something that can happen when you are taking one of the Dopamine Agonists meds eg Mirapexin(Pramipexole, Mirapex, Sifrol ),Requip ( Ropinerole ) and Neupro patch.

Symptoms of augmentation are needing to up your dose of medication, it helps for a while then symptoms come back so you need to up the dose again

Symptoms start earlier in the day

Symptoms start after shorter periods of rest and relaxation

Symptoms spreading into other body parts most commonly the arms

Med not working so well at night

Basically your symptoms are worse than when you first started taking the Dopamine Agonists

The Neupro patch has the lowest rate of augmentation of all the Dopamine Agonists.

Due to the problem of augmentation the experts are now advising patients to keep the dose very low, no more than 2 mg daily for Requip ( Ropinerole ) or 2x 0.088mg of Mirapex ( Pramipexole ) and no higher than 3mg Neupro patch

If you think you have augmentation do not just stoptaking the medication. You need to wean off very slowly under doctors supervision and will most likely need a back up med to help as withdrawals can cause very severe RLS symptoms.

Unfortunately many doctors are not aware of augmentation and keep increasing the dose which is the exact opposite of what needs to happen.

It may be helpful to say where you live as there are very few RLS experts especially in the UK and another member may be able to recommend a good Neurologist.

This is for general information. Always seek medical advice. rls-uk.org has excellent information including information about augmentation and a section for Professionals. It may be helpful to print it off.

Pippins2 x

[involuntarydancer]

Hi Shaunygee,

I will forebear from commenting on the miriad of 'information' you are now burdened with concerning Madlegs and Raffs. I was struck by your tip about the tickling as read an identical suggestion on another rls forum, although in that case it was a girl who suffered from the rls and an understanding boyfriend who was performing tickling duties. Actually, do forgive me if I have made the wrong assumptions - as I type it occurs to me (without wanting to further inflame Madlegs and Raffs), that you are non-gender specific in your post and possibly you, as well as your partner with the feminine nails, are female ...

Well done for reading around the forum before posting - I think it is the best way to absorb all the wealth of information that is available on here.

[Shaunygee in reply to involuntarydancer]

Sorry to possibly ruin your fantasy.. I'm a bloke, north of England and served 22 years in the forces 😀

[flailingman]

I have found that anything that distracts or stimulates the attention or alertness level in the brain, seems to provide limited relief. mostly when the rls is moderate. It has been my opinion that the condition is of a psychological / neurological nature.