I finished taking Ropinerol about a week ago (gradually reducing the dose) but I'm still hardly getting any sleep and gabapentin isn't making any difference (I'm spacing out the dose 1200mg over several hours). I'm also taking a high strength valerian tablet and have tried CBD/THC too. Nothing seems to help apart from repeatedly getting out of bed and doing leg stretching and excersises.
Is it now time to ask my GP for opiods? If so what type, dose and duration?
Many thanks!
Gabapentin won't help much until you are off ropinirole for several weeks. Yes I would ask your doctor for a low dose opioid. You could try tramadol or buprenorphine. Start with a low dose. Or you could try kratom. It is banned in the UK, but according to Joolsg you can get it at kraatje.eu/contents/en-us/d...
So I spoke to my GP who said opiods would not normally be prescribed in these circumstances (in the UK). So she's prescribed me zopiclone for 2 weeks instead.Let's hope it gets me some sleep!
I was prescribed Temgesic (Buprenorphine) in UK to help me get off pramipexole (a similar dopamine agonist). And despite what your doctor thinks, it's the most appropriate time to prescribe opioids. Keep pressing them.
nice.org.uk/advice/esnm67/c.... Tell her to have a goosey gander at this!😝
Very early days yet. It takes a minimum of 3 weeks before the withdrawals from Ropinirole settle. Give it time. Short term low dose opioids are given in the UK to help the withdrawal symptoms but UK doctors have no idea how horrendous DA withdrawal really is. The US experts tell you to expect 2 weeks of little to no sleep.It will start to settle.
Yeah, the zopiclone had virtually no effect last night. I'll try increasing the dose tonight, but if this doesn't work, I'll insist on an opiod.Many thanks for all your help everyone !
I am on 30mg of hydrocone a day for 4 yrs now. my rls has worsened over the 4 yrs and the 30mg no longer controls the pain. I spend 12 hours in bed trying to get 5 hrs of sleep so I know what you mean. Here in the states it is very difficult to get pain meds prescribed. Opiod abuse has made it so doctors are getting arrested or their license revoked if cdc thinks they are prescribing too many pain meds. My dr made it clear that she will never increase my dosage higher than 30mg. Is it difficult to get pain medication in UK as well?
Try also taking 25 to 60 mg of ferrous bisglycinate an hour before bed on an empty stomach. You might be lucky like many of us on here and get relief in one hour. healthunlocked.com/rlsuk/po......
I screen clipped some comments about a patch and dosage someone said they were taking and going to look it up online after I was done reading everything I could on this forum. I dont absorb iron easily so thought that might be a solution. thank you for the suggestion.
The Patch is iffy as to actual amount delivered. A pharmaceutical grade patch is on its way. I can’t absorb ferrous sulfate. The bisglycinate is a whole different story. Good luck either way.
I've been taking ferrous bisglycinate and ferrous fumerate every other night for 2 months now. Hopefully it'll make a difference soon and I can start to lower the gabapentin I'm currently stealing from my wife.
Yeah, UK is the same despite doctors not getting sued or prosecuted here.
You’ve already been given great advice here but as far as opioids go I recommend starting with Methadone 5mg and increase to 10mg, if necessary. Doctors are not as scared to prescribe Methadone as they are other opioids. It has been a complete game changer for me. Best of luck to you.
Interesting that!
Hi,I went through Ropinerol withdrawal five years ago after titrating down my dosages for a year. My RLS doc took me off Gabapentin (I didn’t have to titrate off it, because she put me on Pregabalin (both are alpha legand meds, but Pregabalin is stronger and much much better. Some people get off it too soon because it can cause one to gain 5 or 10 pounds at first, but after 6 months you’ll begin to go back down. I guess it just increases the appetite.
Anyway, she put me on 100 mgs of Pregabalin 3x/day and 100 mgs of Tramadol 3x/day. These are taken together spaced 6 to 7 hours apart. Tramadol is a mild opioid, but it rarely causes addiction, unless you’ve had trouble with addiction in the past. Also CBD without the THC, because the THC can heighten body sensitivity and that causes one to become more conscious of their RLS sensations. I use 500 mgs every morning and occasionally at night when I can’t sleep. I do take Valerian Root before bed and every other night I take Gentle Iron, which is 28 mgs of iron bisglycinate w/a 500 mg bit. C pill—enables the iron to cross the blood-brain barrier. Be sure to only take iron every other day— too much iron isn’t good either. You should get you doc to do blood panel for your Iron levels.
This combo of Pregabalin and Tramadol taken regularly every day made all the difference. After I got through the symptoms of Ropinerol withdrawal, I couldn’t believe the difference—no more RLS. It’s been five years and I’m still doing well. I do occasionally get symptoms at night when I’ve overworked my legs or I get stressed about something. For that I discovered Magnalife’s Restful Legs cream. It’s for RLS among other types of leg irritation. I just apply it and magically my RLS disappears. That’s it. Oh btw, I found this time frame for my Pregabalin and Tramadol combo really works: 8 AM, 3 PM
and 10 PM. Best wishes.
Thank you!I'll discuss this with my GP.
Bganim1947 mentioned pregabalin which is similar to gabapentin, and he takes it 3 times a day, but unless one has RLS during the day which she apparently does it is only needed at night.
Thanks Sue, I'll bear that in mind. I do only get RL at night.
Hi. Did you order the kratom, as we had discussed on another post? No need for such suffering, while you figure out your meds and next steps.
Good luck with the opiates! Getting them I mean. Pain clinics' decisions to remove opiates from pain treatment ought to be suffering chronic pain themselves before making decisions for those that do! Merciless masters of my fate.
PS: Valerian works by triggering the onset of sleep, but won't KEEP you asleep through intense pain. I'd ask for Seraquil, excellent for a good long nights' sleep .
That's useful to know. I think I know someone who can lend me some seroquel to try. Thank you!
Seroquil makes RLS worse in most people. If you need something to sleep I would suggest ativan.
Seroquil makes RLS worse in most people.
Really? Well I personally have only taken it on 2 occasions, many years ago now, so I can't comment further.
It was many years ago, & it WASN'T prescribed, so you'd probs best not follow my stupid advice. SORRY
Hey, no worries. There seems to very few right answers with this horrible condition. I've used a few meds without a prescription. In fact my biggest problem was my original prescription for Ropinerol 😖
Merster here. I don't know if anyone else has combined a low dose of ropinerole with a low dose Ms cointin ( morphine sulphate) . My previous doctor for 30 yrs allowed me to do this as he knew my history of using the opioid for chronic pain. I landed in the emergency room after kidney stone surgery and after being infused with morphine my rls dissapeared for a week. The requip on it's own becomes less effective and eventually augments and is a nightmare. Combined with the opioid it is almost 100% effective and does not augment. So now I have been on this combination for close to 4 yrs and I am 95% back to normal. Go off my regimen and I am reminded very quickly that I have chronic rls. Doctors new to Rls and a new patient will be very reluctant to allow this . if it works for me I am sure it would for others.
That's really interesting. But, as you say, GPs are so reluctant to step outside the box, I doubt they'd even consider this for me. Mine refused to even give me an opiod; the zopiclone has been next to useless even at a higher dose than was prescribed. 😖I'm so glad you found something that works for you. According to others on this forum, it's going to be another 2 weeks before I'm fully over the withdrawal from Ropinerol. After that I'll try gabapentin for a few months.
Interesting for me none of the other opioids worked like the Ms Contin. Maybe something about the slow release and it's ability to maintain a level in my system. I did have to go back to the requip when my doc retired. The new docs agreed to the morphine if I dropped the dose to 90 mg per day . At that dosage it left gaps in my day when the rls should rev up but combined with a low dose of requip they work well together. Just have to remember to take them on time.
Each patient is different. Don't listen to anyone who tells you on this forum to take a specific amount of a specific drug. First of all, that's for a doctor to decide. And second, every case of severe RLS is different.
I augmented out of ropinirole and was left with no choice but to try the low dose opioids. I was of course reluctant, but they are low dose. I will say, it took me a few months (working with my doctor of course) to find the one that worked best for me (which is Belbuca). But it has been a game changer for me.
I wish you well in your journey. There is hope and there is help!
Thanks, things are very slowly getting better. I'm now taking 1.8g gabapentin and my nights are a bit more bearable. I still wake up with RLS a couple of times but it usually goes away again fairly quickly.
Maybe in a few months I'll try to reduce the dose and see what happens.
Glad you've found a solution for yourself. RLS is sooo 💩.
DA Augmentation, foot pain & Opiods.
Stopping Mirapex after 18 years
continued RLS after stopping statin
Continuing nightmare after stopping Pramipexole
getting no sleep after stopping miripex
