Would someone please let me know how best to use painkillers (oxy/Vicodin/etc) to ward off RLS?
I’ve taken myself off ropinerol, but do need something.
I’m a 50 yo woman with fibromyalgia, a rambunctious 8yo and 2 1/2 yo twins with Autism... naps if I can get them need to be had! Lol.
I’ve been taking 1/2 an oxy or Vic as I lay down if for a daytime nap or else RLS will invade my bed. At night I take a full oxy, which somewhat does the trick. But not always, and often not fully.
On particularly rough nights I will indulge in 1/2 a ropinerol... but I limit myself to no more than a few halves per month as I was starting to augment and didn’t know it until I found this website. SO THANK YOU ALL SO MUCH FOR EDUCATING ME!)
Also... what exactly is tramodal and how is it used.
Next I need to get my ferritin levels checked. It’s supposed to be 100+ for RLS sufferers... is that right?
Thank you fir all your insight !
DIane 🌸
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moonhunt18
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Wow, you have a lot on your plate. I also use opioids but because I have no young children, I take 5mg oxycodone around 8pm, then wake up with legs thrashing at 1am so I take another. It does not always work but it's the best so far. I also have augmented on everything else. I was recently given Horizant but that made me feel crazy so I stopped taking it. I am not sure if there is anything else you can do except be tired until your kids get older. I honestly don't know how you do it.
If you stopped Ropinirole you will experience withdrawal symptoms which continue for weeks after the last dose. If you continue to pop a Ropinirole pill on an as needed basis your body will not know what’s happening. Bite the bullet and don’t take any more Ropinirole or your RLS will not settle down.
Oxycodone can be taken at night and you will probably need more during withdrawal. OxyContin taken morning and evening provides a steady level of opioid to the brain over 24 hours without dips and is the usual med for RLS.
You may find after withdrawal from Ropinirole that your RLS settles to how it was before starting dopamine agonists and you may only have RLS occasionally.
If your RLS was daily and more severe you may have to take opioids every day to control it.
Look up all the posts on Augmentation and withdrawal and you will see most people take a few months for symptoms to settle after getting off Ropinirole and finding the right combination of meds for them. Pregabalin or Horizant are other options.
As you’re in the USA check with your insurance- some drugs are not covered . Also if cannabis is legal in Oregan - get hold of some to help through withdrawal.
Tramadol is a synthetic opioid and is helpful for many with RLS but has been known to cause Augmentation as well.
Serum ferritin definitely needs to be higher than 100 for RLS patients. Doctors will tell you bloods are normal if figure is 15 so get the actual numbers.
Iron infusions have helped many on this site and seem to be readily available in the USA.
Lol. Life is interesting these days, that’s for sure! I’m lucky as even with autism, my twins are incredibly affectionate, funny, and smart...and in intensive therapy to bring them into “our” world as much as possible.
Joolsg:
Thank you for the info! I went cold turkey off ropinerol about 6-8 months ago. Only recently started using it as a crutch for particularly horrendous nights. Is that still a bad idea?
I suppose I could take an extra oxy mid-night when I need to, like Hoffie mentions doing. It will probably mean I will awaken groggy and tired, but it’s not like that’s something new lol. . I’m always just very concerned about getting hooked so have been reluctant to take more than my 1-1.5 pills daily. I’m probably overcautious, though.
After I posted this last night I looked back in my online medical charts to see if I’ve ever had a ferritin year. Sure enough a year ago I did and it was only 33!
I’d had been wanting to test it now before starting iron shops so I’d know if it was even a problem. I don’t imagine my iron increased over this past year since my diet hasn’t changed... maybe even worsened.
I’d still be interested in knowing what it is now, but perhaps I should just suck it up and start taking something. But no idea what and how much. (And will constipation be an issue)😳😅
Cannabis is legal in Oregon. I’ve wanted to try it for all my lovely ailments (depression/anxiety/insomnia/ RLS/fibromyalgia...good lord. What a list!) I just never get out of the house to wander into a shop to find out more about it. lol. Also i have no idea what strain or dosage or anything having to do with it I should take.
Wow Diane, you’re going through a tough time. Levothyroxine (T4) is Hopefully helping your tiredness and mood- if not consider NDT or T3 therapy- my daughter recently switched to NDT and both her mood/anxiety & tiredness have improved immensely.
I would definitely not take the Ropinirole - and get the OxyContin instead of oxycodone and take twice a day. For RLS, doses up to 30mg a day are usual and unless you have a history of drug abuse are not addictive for most of us.
Your ferritin is way too low and I think your RLS ( and hypothyroid) will improve immensely once you get levels above 150.
I did it by taking ferrous bisglycinate 30mg pill and iron patch from PatchMD in USA EVERY OTHER NIGHT. Buy both online.They don’t cause constipation.The brain gets the iron quicker this way.
Also take magnesium citrate or threonate every night and consider taking a good pro biotic.
You could also consider keeping a food diary as many people on here have had great improvement by following certain exclusion diets ( low carb/ low sugar/low Fodmaps/vegan/ paleo). Different people respond to different diets.
It probably all sounds overwhelming but if you get any time spend an hour or two reading through this site.
There was a recent post on cannabis strains and if you look at Involuntary Dancer’s reply I seem to recall she listed some strains. It’s illegal here in the UK and most street cannabis is skunk. Not ideal.
I really hope you can get OxyContin & increase your ferritin.
Stay strong 💪- sending positive thoughts your way.
OxyContin is the extended release version of oxycodone and ensures a steady supply of drug to your brain over 24 hours. It’s taken at the same time morning and evening. I take 10mg at 9am and 10mg at 9 pm and also take 5mg at 2am. I have to take 100-150 mg of pregabalin (Lyrica) as well.
Most of us have to tweak our meds to find the right timing and doses.
OxyContin is only addictive at these doses if someone has an addictive personality or history of drug abuse. If you and your doctors work closely together, you can avoid any addiction issues. My dose hasn’t increased in over 2 years.
Oh also- cymbalta is known to worsen RLS- Wellbutrin is fine so if you can tweak the dose of Wellbutrin so you can get off cymbalta- that would be better. Also, mood and anxiety may improve on different thyroid meds ( see my response about T3 or NDT).
Oxycodone 10 mg ER PM and Oxycodone 10 Oral AM works for me. Nothing else worked at all. Good Luck!
You may respond dramatically to an increase in Ferritin - I agree with Joolsg, Ferrous Bisglycinate Chelate - taken on an empty stomach. I used this one $5 and I still have half the bottle. vitacost.com/vitacost-chela...
I have RLS and have had it for over 30 years. I have taken just about all medications given for Parkinson and finally got off Mirapex which was awful. I now take Percocet (oxycodone-acetamophen 5-325 which is the lowest dose and cut the pills in half. I start about 5 pm taking a half and take the other three haves throughout the evening. I take two pills every night. I also keep a small spiral notebook and keep track of the pills I take for fear of taking too many. I find this works for me. Also find that certain foods affect my RLS such as wine (which I have one small glass occasionally but am sure I drink it prior to dinner and drink one glass. I do not drink coffee in the afternoon or evening which really sets it off. I might add the Percocet makes my head itch and while its not terrible my husband does notice me scratching my head and at times remarks that he sees I have started taking the Percocet. I can't believe there isn't anything for RLS yet but know there is research going on. I am fortunate that I have a doctor who trusts me and is willing to work with me on taking the Percocet.
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Has anyone had any success returning to using a DA after a few years break ?
Weaned off Mirapex
Finally off Ropinerol but horrible RLS now... 
How many drug free?
