Desperate for something to help with this nightmare RSL

[cat57]

Hi everyone i'm new to this forum and been searching in sheer desperation to try to find something to help me with this nightmare condition, i know its no a life threatening disease so to some might sound a petty condition to have but when you have it weather mild or severely you know its not petty at all..... just a quick history on my condition... since in my mid to late 20's i had this what i called eebejeebies ( my mum used to have this and fidgetty feet also i remember her say this as a child) but I doubt in 60's-70's it wasn't diagnosed. anyway i remember these symtoms as i mentioned as early as in mid-late 20's sitting in the cinema long journeys in the car or flights on a plane.. I just put up with it however anoyingly wierd and uncomfortable it was.

but over the years gradually got worse, I suppose my late 40's it got really worse until i couldn't get to sleep at night i was so desperately tiered and all i wanted to do was have 1 descent nights sleep just 1 would of done... so i decided to go to the doctors, not really knowing how to explain what symtoms i had.. i have to keep moving my feet/legs strange feelings in/on me legs like something was crawling up them, uncontrollable jerking on my legs whilst trying to get to sleep, not being able to sleep most nights... and when more severe the condition was in my arms and hands.. i felt like a freak explaining all this.

but at the time i had a very understanding doctor who put me on medication which was Ropinirole you gradually built up to a regular dose of 500mcg 4hrs before bedtime...which helped quite well.. for a while, then i started taking 2 tablets, than after a few years i for the symtoms through the day, this i might add gradually happened over quite a few year, I am now 60 and wake up with it and have it continuously throughout the day I am taking tablets 4 times a day now. its driving me crazy.. a few weeks back i went to the doctors and said the tablets just aren't working anymore, ( I dont condone this and please dont do this but i was almost doubling my doses< i did check maximum doses but i know i shouldnt of done this it was stupid) but i was desperate for some relief however small but it never happened. so anyway when i went to the doctors he change the tablets he wasnt keen to do this but the pharmacist has also mentioned to me sometimes the body gets used to one tablet and looses it effect so a change is needed, i had to wean off on the ropinorole and gradually over a course of 3 weeks change to Pramipexole 0.125mg 3 times a day.. which i did but they done nothing at all.. so i weaned myself back onto the ropinirole which isnt working one bit either, so I am trying to get a appointment for the doctors today to see what else if anything i can do/take.

But i wake up after grabbing about 2 hrs on and off sleep throughout the night, i have it now im desperate to get up from the computer to move around but need to finish this off... i will have this all day if i get up and be active it helps but theres times when you just need to sit down and relax .. an i cant even of a evening i cant just sit with hubby and watch tv i have to keep getting up and in the end goto my bedroom and fidget as i cant sleep with hubby as i keep him awake moving and jerking around all night and he has to go to work. I dont know what i expect from righting this its not sympathy i am wanting, i just wondered if anyone else ( im sure there is lots of people in the same situation as i am) is living day to day like this or has anyone have anything that they have though worked for them that would be worth a try... i have tried showering in the middle of the nigh, ( i cant get soak in the bath as i have 2 hips that wont allow me to get in and out of it) walking on cold tiles, cold water foot soaks, warm water foot soaks.. plus things i have most probably forgotten... im just at the end of my tether, and cant find any relief from this dam condition.... i do apologies for going on so long i do tend to waffle on sometimes lol xx

[Hidden]

Hello cat57!

You just described me to a tee! I’ve gone through the exact same thing! You have “augmented” on dopamine agonists and should probably come off of both Requip and Mirapex. But you can’t just stop taking it without consulting your doctor to get something to replace it, like Gabapentin. Hopefully you will get a reply from someone more experienced that can explain it better than me! I’m trying to figure it out too. I understand your agony and I’m so sorry that you’re suffering. The very few things that help me are the new Magnesium Oil spray that I just received in the mail yesterday, cannabis, knee-high compression stockings and ice packs for my legs. I know it feels like a curse, but keep trying to figure out what helps you. So many people here have great advice and information that’s relevant and helpful. You will more than likely hear from them. Keep searching, my friend! 🙂🌷🙂

[Pippins2]

Hi I am rushing at the moment but you have severe augmentation from the medication. Put augmentation in search on here and tell your GP to Google augmentation from dopamine agonists. There's a warning on the medication patient lealeaflet. Also tell GP and you yourself go to RLS UK website for information on RLS. Do not under any circumstances up your dose you are way over. Also get your ferritin iron levels tested. Tell us also of any other medications you are taking

You will need to very slowly wean off the Ropinerole and will need strong painkillers to help you, many find Tramadol helpful x

[Pam34]

rls-uk.org/augmentation-reb...

This is what you need to read.

And follow Pippins instructions. Let us know how you get on. It will be hard but you must get off the dopamine meds.

Pam

[cat57 in reply to Pam34]

thank you i will have a read

[Kaarina Administrator]

Hi cat57,

This is a helpful link on augmentation: sleepreviewmag.com/2015/02/...

[rsears57]

Two 5/ 325 hydrocodone and trazodone work for my restless leg and my sleeping

[DicCarlson]

The advice above is spot on. I think there are many of us - that sort of exist on the brink of RLS due to iron and dopamine regulation and dysregulation in the brain. Something happens - your biochemistry changes, magnesium and other minerals tank, iron stores get pulled down and RLS fires up big time. I had it as a child (growing pains) then just now in my 60's, but no evidence in between.

[Milefulano]

Hey there, you've come to a place where many can relate. The only bit of help I can offer is what's worked for me and if you go this route you may save yourself a lot of additional misery.

The standard of care for this condition is a set of drugs called Gabapentinoids.

If those do not work, the doctors will prescribe dopamine agonists.

Most people end up in a nightmare juggling the side effects AND the worsening of the condition.

I've been down both paths and can tell you that the only thing that currently works and is proven effective over dopamine agonists in all clinical trials is Methadone.

I've been taking 5mg Methadone/25mg Trazodone for 6 months and have been sleeping like a rock.

Don't believe the hype, this works. Good luck.

youtu.be/iCNI_UCj7SI(Not working as expected?)

[Feah]

Dihydracodine 30mg works for me, I've got my life back thanks to that 😊