About 6 weeks ago I had Botox in my thighs , above my knees and calves
I NO longer have the debilitating afternoon and night pain in my legs . Which means I am not laid up with heat packs and can be out and about as I was house bound from 4 pm prior . I can now go out in the evening with my husband .
I take Thompson’s Kava tablet which I find helpful ( do your own due diligence on this one )
20 mg of oxycodone at 8 pm then later at night 10 mg stillnox I now get good sleep.
I hope my new therapy’s continue to work .
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Shumbah
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What a smart and open-minded doctor you have. Not many people on this site are so lucky!
I am not on oxy, I am on methadone, the liquid sort they give to heroin addicts.
It is very cheap, and the liquid allows one to titrate it very precisely. I started on 15mg, just for a couple of days when I was ridding myself of pramipexole, then I titrated down steadily to 6mg over about four weeks.
I have been steady on that very low dose for several months now.
I take 3mg (or1.5ml) in the early evening, and the next 3mg (1.5ml) about two hours later. I use a pipette.
Methadone is very long-acting, so one is covered for 24 to 26 hours easily. I have no symptoms.
Methadone does seem to be the poison of choice of the really up-to-date specialists in the USA and Europe. It does not give a 'buzz', so there is zero chance of addiction at that dose.
I think that oxy is not quite so strong, and that the half-life is shorter.
But I would carry my RLS Alert Card, a letter from my doctor, and hide my meds in small shampoo bottles if I was travelling somewhere with opioid frenzy!
I would need 60 or 70 ml for a three week trip, so it would not take up much space.
Oh my, how we have to plot and plan with this crazy condition - at least now, with methadone, I could sit on a plane for hours without fear and misery. There are quite a few people here who cannot travel - I was like that before opioids.
I am currently in Italy and I am struggling because I’m only on one does 20 mg at night but during the day is tough . Re the urge to move thank good for the pain relief in the legs from Botox .
I’ve only brought a little extra for 24 hour coverage as our trip is 30 hours door to door to and from Australia .
Where r u located ?
Thank god we are going on a cruise tomorrow afternoon .
All the steps in Venice the last 4 days has certainly aggravated the
When you get home, ask your doctor if you could switch to methadone, or at least try it. I cannot see the point of being half-helped. Tell him that you are afraid much of the time. That is not a way to live when it is not necessary.
All the opioids cause constipation, but not all to the same degree. I have found that methadone is less troublesome that codeine, for example.
I control it with a mix of natural fibres that I put together myself - psyllium husks, chia seeds, and sterculia. Swallow a few spoons of that and drink a lot of water. Add a herbal laxative if you must.
Be careful of alcohol Shumbah as it is known to trigger RL. I haven't had a drink for 5 years now. Don't miss it at all but I never was a great wine drinker. Now Baileys Irish Cream... that's a different matter.
And tell your doc that a paper has just been released with the figures for suicide among us - it is almost three times the average. Sadly, many of us know why.
Don't worry too much about your children - the best doctors are working to find new solutions, that I know. There is quite a lot of research going on.
Do you belong to the RLS Foundation? If not, do join. They fund a great deal of research by the best-of-the-best, and one can keep up with new developments. The website is full of sound information, and they have regular webinar series.
(The research on opioids that I posted was funded by them.)
What saved me was knowledge - when I realized that few doctors are trained in this I decided to do it myself. Months and months and months on the internet in the middle of the miserable night, searching for knowledge and talking to fellow-sufferers here and elsewhere.
When I had a fair grip on the subject I took a fat file of scientific papers to my doctor, and I gave him a lecture. He listened, read all the papers, and acted accordingly. First IV iron infusions, (in the nurse's station), then finally methadone.
It took a while, but now we work together. And he is very grateful for my crazy persistence, as he has other RLS patients and now he can help them. I keep him up-to-date whenever I see him.
My doc is a GP, by the way. It should not be necessary to see a specialist.
This is very encouraging, thank you! I've been in the same situation for a very long time. I had to self diagnose initially, and all my medications which have been prescribed to me were on my own proposal at the time. If only I could now find any doctor to prescribe methadone. For now, Kratom has been my life saver, but it's a problem for traveling plus I'm unsure if I can keep my dosage low long enough. Opioid treatment hasn't caught on in Germany where I live, at least not with any of the doctors I've been seeing. Wish me luck!
Hello Wonko-the-Sane! You deserve a medal and abundant health for your lovely name alone. Well done for that.
You might point out to your doctors that methadone was invented by a pair of very smart German scientists in 1937.
I am the only person I have heard of (who is not a heroin addict) that uses methadone syrup, but it is very cheap and the ability to titrate accurately is a big plus. Mine is decanted at my pharmacy from a Big Brown Bottle in the old-fashioned way. No boxes with child-proof closures or little silver blister-packs.
I do think there is every hope, but I wish we could all push together as a group. We know so much between us.
There are class-action suits pending/litigating in the USA, I believe, against the producers of pramipexole and possibly other dopamine agonists. I hope the actions are won.
Wow, i didn't know about those lawsuits. How this horribly addicting and potentially life-destroying drug is still a first line treatment (it is here) is beyond me. Given the abundance of incompetence around our condition (which most of us have painfully experienced) , I probably shouldn't be so surprised. Luckily I managed to at least postpone augmentation until I had found an alternative (Kratom), but it cost me about 10 years of good sleep (by refusing to increase my dosage at libidum). Still, doctors prescribe it en masse without warning the future victims. I've all but given up warning the people in a German Facebook group I'm in about it. So many praise it as their life savior as they are on quadruple the recommended dose..
How did you learn about the lawsuit? I read all scientific research (thank you, Google Scholar!), but I'm missing almost everything that's not a science article.
Thank you for your kind words about my name. The dolphins were delighted when I told them! You're invited to the outside of the asylum any day!
I'm interested in the Kava tablet. I've done a lot of reading about it for anxiety and sleee but not come across anything about it for RLS? Do you have any knowledge that you can share please?
From what I've read, it's important to only use it for up to 3 months at a time. Is this what you do?
What did you start taking it for? was it your RL? or as a sleeping tablet?
I think the steps will certainly help you sleep, as long as you don't do too much and exacerbate your RL. Also being on holiday I hope your stress levels are reduced. I know stress for me is a bit trigger and my legs are always worse when there's something happening that raises my stress levels.
I get my liver checked every 6 weeks for something else.
I was taking it at night but I reckon dinner time is better a few hours before bed .
However the other new thing I have tried when at home marijuana. I have NEVER done recreational drugs until a few months ago but this disease will drive you to try anything . The marijuana was recommended by a doctor at John Hopkins she said edibles were best for this condition however I got verdigo the next day . A few puffs on a marijuana cigarette right before bed clean my teeth and safely sleep like a baby occasionally will get up around 3 for a couple more puffs then straight to sleep . It is so safe although disgusting smoking . I have got me head around it now I just do it slow , I had to have a lesson or 2 😆
I spend a lot of time over seas so my regimes change so I do tend to shake it up a bit depending on where I am in the world .
I will have to try that. I'm running out of other options. You say you're in Australia? Did I read that? I too am in Australia so we're bound by the same laws! My latest appointment with my sleep physician, who doesn't really know a lot about RL, did say he would fight for me to get cannabis oil if I need it! I think that's very kind of him and I know he is renowned for being an advocate of his patients.
You've given me several things to think about, thank you.
My Natropath organised it easy as . So yes I do have that also a bush joint is better .
I find with the spray it is called nanabis I need about 14 pumps over the evening for my legs to stop . I do use it to its handy I just took it to Tasmania a few weeks ago had my letters etc I did not get stopped .it tastes foul but that will not stop us sufferers I add good quality essential oils lemon or orange that helps .
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