Hi allI have not been on the forum for some time. I have primary RLS . I am 60 now but have suffered since I was a child. Went on Ropinerol 0.5 mg in my late 30s up until then no treatment as I didn't know how to articulate the sensations and only realised it was a condition that others suffered with after seeing a documentary about a sleep centre and heard others describing the same symptoms and that it had a name. After 15 years of being almost symptom free unless I forgot my meds I started noticing they were not working as well as they used to. I did not want to take more in case I kept needing to up the dose so did my research and found this group. I was unaware of augmentation until I joined. Managed to get my GP to prescribe Tramadol 100 mg and Lyrica 150 mg . These worked quite well but not as well as the Ropinerol did initially. The downside of Tramadol was it made me feel wide awake when I needed to be asleep but it was better than being wide awake with nasty sensations. Then a few years ago I started needing a second dose or I would get break through in the early hours. I wrote to Dr B in America. He said I would probably need stronger Opioids. I tried to resist these as long as possible. I had COVID a second time in September ( not too bad ) and then just kept ill . Would get over one thing and then be ill again . No energy , very breathless. This kept happening so I began to get really depressed. After a round of blood tests I found I had really low levels of Vitamin D . I have been on a high dose since mid October. Energy levels back to normal now but the depression was so bad just before Christmas I was put on Fluoxetine. I knew it might make the RLS worse but I was in such a state I thought I would have to take the risk. Mentally been much better but 8 weeks in and my RLS is through the roof . I have symptoms in the day something that has not been a problem before except on the odd occasion. I decided I will have to stop the fluoxetine but am terrified of feeling suicidal again but can't cope with these relentless symptoms. My GP has given me Oxycodon 5 mg pills and said I can take up to 2 a day . She has said she is happy to swap to the long acting version if needed. .My question is how long should these act for . I am only getting about 4 hours before I need to take the second one then have to be awake for about 40 mins to an hour until the second pill kicks in . For those of you who take it is 4 hours usual? Tramadol used to keep it at bay for most of the night before it stopped being so effective. Are any other Opiates better ? I also have the Therapulse buzzy device that you strap to your leg/ legs but have not found any benefit from using this . I remember people saying they found Kratom helped them but I am in the UK and think it is illegal here but I may be wrong. If anyone has any suggestions I would be grateful for them. Also any ideas on how long before the residual Fluoxetine will cause issues for. I did ask about the 3 antidepressants that are not supposed to be a problem for RLS sufferers but GP said they don't like prescribing them anymore as they are old addictive types , 1 she had never heard of . TIA
Oxycodon : Hi allI have not been on the... - Restless Legs Syn...
Oxycodon
Buprenorphine is a better opioid because it lasts 24 hours. As you found out oxycodone only lasts 4 to 6 hours and the long lasting ones aren't much better.
Yes kratom is illegal but Joolsg will be along to tell you where you can get it,
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.
Thank you , not taking OTC meds, started fluoxetine a couple of months ago.I take vitamin D . Re Buprenophine what is the dose usually needed? The Oxycodon seems to make my heart race when it wears off. Stopped talking fluoxetine a few days ago.
oxy extended release lasrs about ten hous but u need a higher dose. bupe and methadone are the long acting ones. they use a lot stuff like gabapentine/amitripylene here. my gp doesnt prescribe a lot of things now so ppl buy a lot stuff like that or failing that kratom is legal where i am (uk) but i believe theres a lot of dangers to kratom.
tramadol is awful for keeping ppl awake, lowers seizure threshold too. bupe u can start as low as 0.1mg. maybe pick up some oramorph so u can take it when needed.
Start with .2 mg. The usual effective dose according to the Mayo Updated Algorithm on RLS is .5 to 6 mg.
Kratom is illegal in the UK. However, you can buy it from
They send in a discreet package as herbal Moringa tea. Tramadol is the only opioid that also causes augmentation.
Oxycodone is short acting and is supposed to last around 4 hours and Oxycontin is supposed to last 12 hours. They don't for many RLS patients. I wasted 5 years on 25mg Oxycontin. It would last around 4 hours, then my RLS would become very severe.
Long lasting, low dose Buprenorphine has a half life of 24/25 hours so it covers day and night RLS.
I take 0.2mg at 9pm and 0.2mg at midnight. I have no RLS. Others need slightly higher doses. The average is 1 to 1.5mg.
Buprenorphine is red listed in many UK prescribing areas, so ask your GP if they will consider a 3 week trial. You may need to see a specialist to get it prescribed.
The only RLS safe anti depressants are trazodone and Bupropion.
Thanks for the help. Having exactly the same issue with the Oxycodon it's like a switch taking me from zero to a hundred in seconds. Will go back to tramadol until I can get a prescription for the Buprenophine. Hoping when the fluoxetine is out the system things will return to how they were.
Bear in mind tramadol is the only opioid that can cause augmentation. Hope the fluoxetine leaves your system soon.
Yes pretty sure I am augmenting on Tramadol but it still lasts longer than Oxycodon so will stay on it until I see a GP Re: drugs on the red list - does that mean the GP can't prescribe them or just flags up a warning. ? Do you know of any private consultants that are well versed in RLS ? I live in Stansted so 45 mins from London.and 30 mins from Cambridge. The last time my GP tried to refer me to Neurology they rejected the referral and gave GP to try a different dopamine agonist. After just going cold turkey from Ropinerol there was no way I was going to go back on a similar drug . There is a sleep centre in Papworth Hospital,Cambridge. I will ask for a referral there but don't hold out much hope.
Do you know much about Kratom? I know nothing except that some say it helps. Is there a variant that is better than other? I have know idea how you take it either. . Sorry to ask so many questions , I am feeling desperate as get very little sleep and have to work . It's difficult to concentrate on anything as so tired all the time. I hate going to bed now as I associate it with tossing and turning, pacing and stamping.
I used kratom to help get me off Ropinirole in 2016. It was legal in the UK then.I used red vein borneo, a teaspoon when needed, but I kept the dose low as I know kratom can quickly stop working. It tastes foul. I used to add it to orange juice and drink quickly. It takes effect within 30 mins.
It can be bought from Holland, BUT it is illegal in the UK. Kraatje ship quickly and discreetly as moringa herbal tea. If you decide to go down that route, try to use it only when absolutely necessary.
If Buprenorphine is red listed in your area, GP cannot prescribe it at all. Only a neurologist or sleep specialist is allowed to prescribe.
Professor Walker at Queen Sq in London does private work and is knowledgeable BUT recently he said Ropinirole is fine up to 2mg ( nonsense- people can augment on 0.25mg) and he has decided NOT to prescribe Buprenorphine any more because a few of his patients had teeth issues ( Buprenorphine causes dry mouth for many). However, mamy of us have NOT had any teeth issuees.
Another possibility is Dr Guy Leschziner in London.
Papworth Clinic has good reports so you could call in advance to ask if they prescribe Buprenorphine or methadone or iron infusions for RLS.
Which version Oxycodone are you using? Are you on 10mg Longtec?
i take buprenorphine, lower doses only last about 6 hours so i prefer oxy. i needed high doses of bupe for the extended effect. it does stay in the system 24 hours but the half life makes it ineffective after 6 hours i find but its depending on the dose.
kratoms been shown to cause a lot of long term damage only a lot of which is just coming out. its easy to buy in uk with a quick search. we have a couple of herbal shops that store it where i live but prob best avoided if u can get pharma stuff.
It's very complex because we all have different reactions to drugs. I take a low dose of morphine successfully. Good luck.
Hi Mantel. I am 60 as well and have the same sort of history as you.
I was interested to read what Sue said below. I am now (finally) on 150mg Pregabalin plus 10mg Longtec (the long release version of Oxycodone) ever night, and whilst I do get a few "shuffles" sometimes, and slightly worse than that if I have too much red wine (!), my RLS is pretty much under control.
I used to get daytime RLS but that was only because of the final augmentation from Ropinirole.
I can only speak for myself, but it might be worth giving the concoction of 150mg Pregabalin plus 10mg Longtec a go. I was prescribed this by Professor Walker, one of the RLS specialists at the Neurology Hospital at Queen Square, London.
Thank you, the GP did say I could try the longer acting version but the regular tabs made me feel horrible when they suddenly wore off and my symptoms were really bad during the day time which normally is not an issue . I had a couple of long acting morphine pills that I took away from my mum as she had dementia and we were worried she would take too many . She was given them when she broke her pelvis. I tried one last night and had a really good night's sleep.
my modified release oxeltra works through the night but it didn’t resolve the insomnia so I was prescribed CBD oil to help with sleep (private prescription through Curaleaf clinic). I also have Long Covid and I also have a private prescription for LDN and that is helping with energy and low mood.
Where did you get your private prescription for LDN my son reacted to his booster jab and he now had vaccine induced long covid and wants to try LDN but GP said he can't prescribe it.
It is a private prescription organised through LDN trust, I searched online.
Fluoxitine (prozac) has had no effect on my RLS. I take Vicodin (hydrocodone), 10/325 every 4-6 hours as needed. I've been able to go as long as 8-9 hours without feeling the RLS if I slip a half pill in there around the 6th hour. I've been on the same opiate dose for almost 10 years with no increase in dose needed. Please don't shy away from a drug that will relieve you of the misery that is RLS just because you think you might get "addicted". Your quality of life is important. Please look into it.
I will definitely try to find an opiate that works . I have no issues taking them . It's convincing the Dr to prescribe that seems the difficult thing.
Yep. They're kind of aholes about it. So afraid of the authorities that they no longer advocate for their patients. And they justify their refusal to Rx opioids by saying that they're looking out for our health. No they're not. Not sure where you are. I'm in AZ, in the US. No GP will prescribe. They send you off to a Pain Management Specialist, with a referral, to appease your insurance company. They're not following the science. Nor are they following their conscience. They're following the safest yellow brick road. I'm thoroughly disgusted with the system.
Totally agree, I am in the UK , if I can't get something that works I will buy from India. If you are desperate you will try to get them from wherever you can. They should just prescribe in line with the Mayo guidelines . It says patients should not be refused opiates when 1st and 2nd line treatments are not working.
Hi Mantel, My story is very similar to yours. I took Oxy for about a year. I was not able to get through the night without symptoms. My usual night was about 4, maybe 5 hours of sleep. I then switched to methadone, 5 mg to start then to 10. I really didn't want to take 10 mg, so I split the dose thinking if I need the second dose , I would take it. ( always ended up taking it) This was not working. My neurologist told me to take both together( 10 mg), BINGO, that was what I needed. So perhaps you could try taking the 10 mg together and see what happens. Good luck!
In the US, I've been on 10mg/day of methadone for 5 years and it has completely eliminated my RLS symptoms, but UK MDs are too ignorant to prescribe it. Kratom works well temporarily but I eventually built up a tolerance to it and was lucky I found a doc to prescribe methadone which is so low-dose that tolerance doesn't develop. Buprenorphine seems to be your best bet in the UK or Australia. Both meds do well because they are long-acting.
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