Hi fellow RLSers I'm a 67 year old woman and I've had RLS for at least 30 years I'm a very fit and active individual always have been don't drink a lot of alcohol or coffee.
My doctor first of all told me to try tonic water as the quinine may help. No!!!.
So I was put on 1 tablet a day of Ropinirole after a number of years I'm now on 2 tabs one I take late afternoon the other going to bed.
My RLSis getting worse even with the tablets I would love to find a natural way of getting rid of the awful curse.
Would anyone in the group have any suggestions please
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Janeco1
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Janeco1, welcome to the forum.Please read up on the pinned post on this page about " augmentation" . You will learn a lot about your condition and possible courses of action.
I know of someone on another forum who takes a low dose of Ropinirole and a low dose opioid which has controlled his RLS for several years. If however you are augmenting on Ropinirole, you may wish to come off it. You then have several other options to consider. However, it really depends on where you live and prescribing laws/practices in your country.
The first and most important step is having your iron levels esp ferritin checked out and possibly having an iron infusion (there are many posts on this on this forum). This improves RLS in approximately 60% of cases.
*Cannabis (cbd oil with THC, smoking or ingesting cannabis/marijuana).
Beyond that there are non pharmacological approaches such as restrictive diets, moderate exercise, nutritional supplements etc but these aren't always sufficient for many sufferers.
Hi Janeco,Sounds like Augmentation. Ropinirole was miraculous at first but then it turns on you and makes the RLS more intense and 24/7.
Withdrawal is possible but very difficult. Your GP clearly is useless- tonic water sums it up! There's a campaign happening now to get RLS included on the curriculum for doctors( they're taught zero about RLS at present) so it would be great if you could join. The template letter is there, you just need to email to the organisations listed. The more of us who do this, the better treatment we will receive.
As Manerva suggests, show your GP the NICE guidelines and make sure you get help reducing Ropinirole.
I reduced by 0.25mg every 2 weeks. Tramadol and cannabis can help and starting a replacement med about 3 weeks before the last dose of Ropinirole is a good idea. Pregabalin or a low dose opioid are probably the best options.
Your GP will know nothing about augmentation or how to help you through withdrawal so spend an hour or two reading up on augmentation and the posts on here and the replies. You'll learn enough to be able to argue your case.
My mother was on Gabapentin for many years with excellent results.have you tried that? Recently, the Gabapentin was not working as well and after surgery for a broken hip, it seem to stop working altogether. Her doctor put her on Ropinerole, 1 tab, but that was making her very groggy in the morning, so we cut back to 1/2 a tab at night and that seems to be working now. You might also get your magnesium levels checked. When we added magnesium to mom’s nighttime pills, it was very helpful in getting her legs to relax. Best of luck.
Janeco1, welcome, you found the best place for information on RLS. Please read Manerva's post over and over. I can't tell you how much he (or she) has helped me.
Augmentation is hard. I unfortunately made the decision to quit cold turkey. I was not warned. DAWS is real, so please withdraw slowly.
I know you have had RLS a long time, but please do a morning fasted full iron panel. Nothing improved my RLS until I got my iron under control. Iron can help with augmentation!
I am a fit person, I reported so many signs of anemia, but the response was, my blood was fine, iron was low. Giving me iron was like giving me steroids as far as endurance goes.
Manerva explains it better than anyone, I unfortunately just survived it.
Wish I could be of definite help, Jane. Sadly not. All I can say is that I have been on Ropinirole for seven years. Always taken four tabs at night about 90minutes before going to bed. Worked OK until the last year or so when it just stopped. Altered diet to tackle problem. Stopped eating chocolate; worked for a few days and then the RLS demon sussed it out and started symptoms again. Similarly, took out all refined sugars, desserts etc. Worked for about a week. Finally went to a (expensive private) consultation with a neurologist who decided to try switching me to pregablin. Have not started this yet because, having tried drastically reducing coffee intake, the worst of symptoms have disappeared. Just waiting to see if the demon will find a way round that, too.Reading here and elsewhere, it seems that ropinirole will stop working, It can work for as briefly as a year or more, or it can go for seven/eight years. The RLS demon is a nasty, devious beast; it'll try to get you somehow.
I have tested positive for toxic metals like lead, mercury, aluminum and several others. Most people in today's world have these. They greatly aggravate my nervous system. Often using a detox binder, or mix of them, will alleviate my RLS. If that doesn't work, a coffee enema will often do the trick. About 10% of the time, neither works. Supplementing with natural iron and eating red meat definitely helps. Another thing to look into is KPU, a genetic condition that disrupts heme metabolism. BioPure makes a supplement called CORE which addresses this. Also sleeping on a slant wedge mattress which seems to help calm down and "drain the brain."
Weaning yourself off ropinirole (with the help of your dr) will lessen your RLS. Mine had become unbearable on ropinirole. Once off, mu RLS returned to just being at night and sometimes in afternoon. I had to give up all traditional medications due to various side effects. I have been able to control my symptoms 95% of the time with CBD. It takes some time to find the right dose but I’m so happy to not have any side effects anymore. Any DA drugs like ropinirole also can cause personality changes and compulsive disorders. Oh, I also try to keep my ferritin level up by taking iron with vita C a few times a week. Good luck.
Most CBD has trace amounts of THC in it and is called ‘full Spectrum’ CBD. It is possible to find it without THC, however most manufacturers claim that the trace amount in it would not show up on a drug test if that is your concern. I personally think that would depend on how much you take. If you are consider trying CBD be sure you get it from a reputable supplier that has a third party double check each batch. The first time I took it I bought it, it was from a store front that only sold CBD. It made me drastically sick with just a little bit. I found Lazarus Naturals online who does have their products third party checked and you can go online to see the results as each product has a run number on it. Also if you are a veteran you can get a 60% discount on their products. And no I don’t work for them. Just a happy customer with very little RLS breakthroughs! Hope this helps.
Thanks Irmajs for your reply. I'm not so concerned with where to source it, or driving issues. I was really just interested to know if the product that works for you has THC in it (not as a trace ingredient but as an 'active' ingredient).
After reading many posts about CBD, firstly, be aware there is a whole host of products called "CBD" and there are a vairiety of contents in the products. The BBC did a survey on some so called "CBD" products last year and even found that one of them had no cannabinoids in it at all.
"Full spectrum" sounds impressive but may not mean a lot,other than it contains all the cannabinoids.
It is the content of the CBD which is is significant. both cannabis and hemp have cannabinoids in them, but cannabis has more THC. It does seem that the more effective products do have more THC in them.
In which case, it seems that any "CBD" which is going to be effective will not be legally available in the UK.
It is available in the UK. I take cannabis oil with 20% THC. Twenty21 will prescribe it for RLS sufferers but it's only available on private prescription for now so works out around £2-3 a day.
I wish I could find someone that would prescribe an iron IV in the States (Arizona). The first time I had my ferritin level checked it was 7. I went to a neurologist that specializes in movement disorders and through taking iron I got it up to 94. It’s a constant fight to keep it there. My GP doesn’t understand and I gave up on the neurologist because she only wanted to put me on drugs for my RLS. I’m doing pretty well controlling with CBD but think the iron boost would help from getting breakthrough sysmptoms. Thank you for being here for all the people looking for help. You are a great resource!
Thanks Manerva, medical cannabis is very tightly controlled here in Australia and the products tend to be very high grade. I'm always interested to hear of others experience with CBD but agree, it is very difficult to draw comparisons given the variations in products and quality.
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