RLS agony

Hi I’m new to the forum. I’m 50, female and have had RLS since about age 18. It’s got worse as I’ve got older and I’m on a relatively low dose of Gabapentin and Ropinerole because I was on a spiral of them being increased to scary levels in my opinion and I wasn’t happy with that. I’ve had low levels of ferritin and periodically have to take supplements. My nights lately are horrendous. I writhe around on the floor crying most nights. I need to change something and find new medication. It’s nice to read people’s stories on here and realise I’m not alone in the way I feel.

[Madlegs1]

It's the Ropinerol that's possibly doing the damage. Please read up about "augmentation" and start going off the Rop--- very slowly and by tiny increments.Good luck.

[Hidden in reply to Madlegs1]

Yes, I’ve read about it before and tried to come off it previously without success! The tablets are so small and a weird shape to try and cut but I will definitely give it another try, thank you x

[joepublic in reply to Hidden]

You can get smaller denominations & other shapes than those hexagonal shaped ones - I did.

[Hidden]

Thank you I will definitely try to reduce my ropinerole starting tonight. I would try anything besides drugs. I’ve thought about weighted blankets but not sure. I’ve been through my medicine cupboard already and found some ferrous sulphate I had prescribed a while back as my levels were low after a blood test. I’ve requested some more but they may send me for another blood test which is absolutely fine. I will discuss upping the gabapentin then. Thanks for this very helpful info

[TheThirdDoctor in reply to Hidden]

I have just come off Ropirenol, and it has been a pretty grim experience. Let me encourage you, however, by saying that as soon as the 36 hours after my last dose the day time RLS has significantly reduced, and during daylight hours I can live happily enough as I now am. I am pretty sure that you too will begin to find some improvement as soon as you clear that last hurdle.

[Hidden in reply to TheThirdDoctor]

Oh my gosh thank you. I did go ‘cold turkey’ once and didn’t sleep for 2 days and had to have time off work. I do feel positive though about reducing it and I will persevere. Thank you for your advice 🙂

[TaliT]

Hey, I can relate. I started with mild RLS at 17, would be a bit twitchy every few months. But it was bearable. After I had my son, at 30, the symptoms got worse and worse rapidly. I started on pramipexole, dose kept being increased. Saw a neurologist when that stopped working and was put on ropinorole XL. The PLMD started around 2916. That’s been increased to 4mg at night, 1mg clonazepam and 900mg of gabapentin three times a day. A sleep study showed 254 movements per hour, never enter REM, and my total sleep efficacy was 10%. I’d kicked up a fuss to be seen in London, then Covid hit. So have been battling on. Got to speak with Professor Leschziner in December and he wants me to reduce the ropinorole by .5mg a month. So a weaning length of 8 months. I was given Targinact (oxycodone - stronger than morphine) to take to help with withdrawal. I’m down to 1mg of ropinorole now. My symptoms are 24 hours a day, if I go to bed I spin like something in a horror movie. Kick walls etc. Due to the symptoms and pain being unbearable I rang the Dr, got someone new. He suggested I take some paracetamol! I wanted to scream. Another Dr rang me up and said “try and breathe through the twitches”, I was distraught. My limbs feel like they are being ripped apart all day long. He then suggested, double my clonazepam, take 30mg of codeine, 40mg of oxycodone and 20mg morphine oh and lidnocaine patches on my legs. Even after all that I have been up all night. I’m now at the point that if I do nod off, I start sleepwalking, this only occurs when so sleep deprived.

I spoke to my normal GP this morning who is appalled by the advice I was given yesterday, and I’m currently packing my case to stay in neurology and get ropinorole out my system - hopefully with intrathecal morphine and fentanyl!

I’ve tried cutting out food items, weighted blankets, good bedtime routine, no technology in the bedroom, hot baths, cold baths, bar of soap in the bed etc. More research needs to be done. It’s a disease that is debilitating with the most stupid name that people laugh at. I wouldn’t wish this upon anyone.

I hope you find some relief, because severe RLS and PLMD does not feel like fizzing in the legs, or ants crawling. It’s agony!

[Hidden in reply to TaliT]

Oh I’m so sorry to hear what you’re going through. You’re right, it is a debilitating condition with a stupid name that most people have never even heard of and I feel utterly embarrassed when I try and explain it. Unless they’ve had it it’s hard to emphasise how awful it is. I really hope you get some proper help and can start to live more ‘normally’ again. I always feel grateful when I get 4 hours sleep but that is never without waking anyway. I get it in the daytime sometimes too. Being ‘trapped’ in a seat on public transport or even at a theatre trying to enjoy a show has been a nightmare and ruins it. Sitting there squirming like a bored child is so embarrassing but the more I try to keep still the worse it gets. I dig my nails in my legs or anything just to get relief and create a distraction in my head. God this is such a horrible condition isn’t it? Lots of luck to you xxx