Hi everyone l have had severe restless legs most of my life even before they gave it this name l have been on many opioids which no-one should be prescribed has this particular medication doesn't help as with time this medications dosage as to be increased to a point where you cannot take anymore and the you have to be slowly weened off it these nightmare!I have Been on Berthamorthin very low dosage and for the very first time in my life this medication works.But yes there is a but UK GPS may not prescribe this as it is a replace for many drug addictions.
You may have to go to your GP and insist that you want to try this gabapentin premagablin didn't work for me last resort was this medication relief can't believe it I'm not saying it works for everyone but l am 65yr old and have had this condition since my early twenties.
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Low dose opioids work very well for severe RLS BUT, the short half life opioids, like codeine, tramadol, oxycodone, oramorph are not successful for some of us because they only last 4 hours and cause mini opioid withdrawals. The main symptom of opioid withdrawals is increased RLS.I have not heard of the medication you list, but I'll bet it is a long half life opioid, like methadone or Buprenorphine.
Many of us on here are now taking Buprenorphine with great success. Buprenorphine has a half life of 25 hours, so it doesn't cause mini withdrawals.
RLS-UK is trying to get Buprenorphine trialled for RLS in the UK, so the tens of thousands of people currently suffering woth refractory RLS can be treated.
Your Bio mentions Pramipexole, but I presume you are off that completely? Your doctor should also do full panel, morning, fasting blood tests and raise your serum ferritin above 100ųg/L, preferably 200ųg/L via pills or iron infusions. GP should also ensure you're not on any meds that cause or trigger RLS.
If you're on Buprenorphine, which city do you live near? We're trying to establish where Buprenorphine can be prescribed in the UK, as it's restricted in many areas.
I have all the relevant blood test all my levels where normal l have been taking Buprenmorphine since March this is year my last medication was premaprexol nightmare l was taking well over what is advised. l am in the UK Bolton area it was actually a out of hours surgery where l saw this GP he knew quite a lot about RLS he actually prescribed the buprenmorphine because l had gone cold turkey off the premaprexol and really ill something l know l shouldn't have done but was at the stage l didn't really care what happened to me my legs where really bad and l had started to get the same feeling in the tops of my arms.l am also waiting to see a Neurologist hoping for a stellate ganglion block a injection under anesthetic to block all the nerves that send the pain signals has l suffer with fibromyalgia sciatica from herniated discs l can only hope rhen l can stop all medications.🤞
Many of us are also taking Buprenorphine with the same miraculous results.I hope the operation goes well.
The anaesthetic team need to be told you have RLS, because the anti nausea they use triggers RLS. Please discuss beforehand and ask them to use Zofran, which is RLS safe.
Yes had all necessary tests done all where fine l am waiting to see a Neurologist there is a injection that can help not just for restless legs.l also suffer from fibromyalgia and herniated discs which cause sciatica the injection is named stellate ganglia block which is done under anesthetic hopefully the neurologist will give me this fingers crossed then l come off medication🤞
As you are already taking buprenorphine I feel it is unlikely that anything else the doctors do will relieve the RLS and you may have to keep taking it. However as neuropathic (nerve) pain can be related to RLS then it’s not impossible that things may change if you get a stellate ganglion block. There’s nothing to stop you reducing buprenorphine afterwards as you can always resume it if RLS symptoms are still there.
You might want to read the experience of a couple members that had the stellate ganglia block healthunlocked.com/rlsuk/po...
If you do have it let us know how it was, if it worked and for how long.
Doctors will say your ferritin is fine but what is fine for others is Not fine for those of us with RLS. Ask for the number which you are entitled to have and report back here.
I started Buprenorphine 3 years ago to replace 25mg Oxycontin and 150mg pregabalin, which hadn't helped much after 5 years. I take 0.4mg Buprenorphine sub lingual pills.The first night I took it, I slept 8 hours with Zero RLS for the first time in decades.
But I woke with severe nausea. It was horrendous.
However at day 7, I remembered that chemo patients use cannabis for nausea and I had medical cannabis. I used it for a week at night and the nausea disappeared.
At week 4, I developed opioid panic attacks, but I was expecting them because I also developed them on Oxycontin. I had been advised by email from Dr Buchfuhrer to add pregabalin at night. I started 50mg pregabalin and it stopped the panic attacks.
I also developed a racing heart and head sweats, but the pregabalin helps those as well.
The bliss of going on long car journeys, flights, sitting still through the cinema and NEVER experiencing the torture of RLS is worth the odd sweaty day.
I've been trying to find a UK trial site for Buprenorphine for over 2 years.
King's College Hospital, Bart's, Liverpool and Aneurin Bevan hospital trust have all said they can't do the trials.
That's really interesting - thanks. I'm not clear, are you in the UK? And are you saying that Buprenorphine is not available or has been approved in the UK? I'm in the UK 🙂
I'm in the UK.Most RLS drugs are prescribed 'off licence'. Only dopamine agonists and targinact are licensed for RLS. Pregabalin, gabapentin and any other drug are 'off licence' which means the GP can be struck off if anything goes wrong.
Buprenorphine is also 'red listed' in many prescribing areas so ONLY a specialist can prescribe and monitor.
So first ask your local pharmacy whether it's red listed in your area.
If it is, you'll need to see a neurologist first to ask for Buprenorphine. Then, you have to hope your GP agrees to prescribe. Some GP surgeries in the UK have a blanket ban on ALL opioids.
That's very helpful albeit a bit challenging. Seems like lots of hurdles to get over. I'll do what you suggest and see where it takes me. I've been playing around with combinations of ropinirole, gabapentin and pregabalin for a while. Have worked to some extent but my RLS now seems to be getting worse - as it does apparently with age. Ferritin fine. I'll keep you updated. Thanks again Joolsg - appreciated 🙂
I think it gets worse if the treatment isn't the right one.My RLS was very severe on Ropinirole, but that's inevitable. Ropinirole, Pramipexole and Rotigitone will all worsen RLS, for everyone.
My RLS is non existent now. On the right treatment, even though I'm 64.
If you still take ANY Ropinirole- that's why your RLS is getting worse.
I understand that about Ropinirole (I'm 66 by the way). The problem I have is that my GP suggested Pregabalin as an alternative, and I was to slowly withdraw from Ropinirole as I increased Pregabalin. But as I lowered the Ropinirole dosage (gradually) the RLS symptoms increased at nighttime which prevented me from sleeping. So while I'm still on both drugs it seems as though it is the Ropinirole that's allowing me to get some sleep. And the concern is that the RLS symptoms are now visiting me during the day and making things very difficult. So I'm a bit stuck not really knowing what to do next. I'm really pleased though to hear your good news story!
That's classic augmentation & withdrawal. Pregabalin does NOT override severe Ropinirole withdrawal. Ropinirole always allowed me to sleep, even when I was in severe augmentation. However, I couldn't sit still in the day and it was SO severe. It moved to my hands, arms and face.You have to go through withdrawal BEFORE Pregabalin starts to work.
Did your GP honestly think you could just swap one for the other with no withdrawal?
Have a look at the withdrawal schedule on RLS-UK under Useful Resources.
You will NEVER be RLS free unless and until you get off Ropinirole completely.
Pregabalin helps many and works around 3 weeks after you're off Ropinirole.
Withdrawal from Ropinirole is hell. Worse than heroin or crack cocaine.
Most need an opioid to settle the withdrawals.
Recently, a few have avoided hellish withdrawal by swapping to Buprenorphine as they reduce Ropinirole.
So please, read all the posts on here about Ropinirole and Pramipexole and you will see the ONLY solution is to get off Ropinirole.
By 0.25mg every 2 weeks.
I am so eternally grateful that I followed the advice on here 8 years ago and got off that poison. I realised my GP and neurologist knew absolutely nothing and were giving criminally negligent advice.
The only neurologists to listen to are Drs Berkowski, Winkelman, Buchfuhrer, Koo etc in the USA.
Joolsg is 100% correct. Let me just expand on it. First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
If you find that is too much to reduce by you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
hi. I’ve had this a long time as well and it can be a nightmare. As you have done you just need to see what suits you. It may not be for everyone but a cure would be nice.
Like you, I was on Oxycontin and pregabalin for 5 years and still had very severe RLS, up several times a night.I pushed, and kept pushing Professor Ray Chaudhuri at King's College to let me try Buprenorphine. He refused initially, but eventually sent me an email to say he would have no objections if my GP agreed to prescribe it.
Luckily, Buprenorphine is not red listed in my prescribing area, so my GP agreed to a 3 week trial.
The first night I took it, I slept 8 hours with zero RLS night or day.
I suggest you ask for Buprenorphine. There are now several UK neurologists who are aware that it works brilliantly and they will either direct your GP to prescribe it, or issue a green form prescription to you.
Dr Chris Murphy in Salford, Dr Robin Fackrell in Bath, Prof Alistair Noyce at Bart's London and Professor Matthew Walker at UCL London are all familiar with Buprenorphine for refractory RLS.
Myself and a few other women I have spoken with did not like Gabapentin at all. It didn’t stop the RLS and we felt very drugged in the morning. I’m on the lowest dose of Ropinirole now and it works well. I’m aware of the augmentation factor but I haven’t been on it long enough yet to be concerned. Good luck to you.
This info is not really directed at you, but just at anyone who happens to read it.
When I took gabapentin (I'm female) the first dose was 100mg and I felt like I was going to float away. However --- you get used to it, and I ended up NOT feeling much of anything at 2400mg. It was helpful for the RLS (this was about 15 years ago) but wasn't a cure-all by any means. Now if I avoid ingesting the things that I know are causes, I don't need anything very often. I'm taking 3000mg of L tyrosine and 1/4 teaspoon of red vein kratom. Very likely you have no access to the kratom. But tyrosine does raise dopamine in my experience.
No, I didn’t but I DID read that it takes a few weeks to kick in. I can’t wait that long so I just went back to Ropinirole. My sister takes Horizant and LOVES it. You might not have it in the UK.
So why don't you come off ropinirole and go on horizant? You are aware of augmentation and even on a low dose that can happen and it is a lot harder to come off it when that happens.
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