Rls

Hi. I got diagnosed with rls 8 months ago and have been taking pramipexole ever since. I have started with 0.25 mg.. a month a go I thought that it stopped helping me... I started being careful about what I eat and I think that helped big time. I stopped drinking tea(alcohol etc. ) after 4pm. Also if you are a chocolate lover stop that too. :) anything that has caffeine in make s the rls worse I believe. What do you think? I am now taking 0.125mg of pramipexole to see if u can come off them slowly. I got so worried after reading the threads here that pramipexole is addictive. I talked to my doctor and he was rubbish as when I asked him about the medicine side effect he read it out from the screen. Never mentioned that it might be addictive. Any remedy tips that anybody know to make rls better ? :) thanks in advance.

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  • Hi there,

    You are quite correct to be careful what you eat and in particular about the timing of it. I too have found that limiting counter-indicated substances to before 4 pm has been helpful. In terms of remedy tips there are loads on here and it is definitely worth looking through and trying them as some work very well for some people. Particularly I have seen people recommend the fodmap diet and also a diet low in oxalic (?sp?) acid. It is worth getting your serum ferritin levels checked (a blood test which you should be able to get at the GP surgery) as raising levels to above 100 is considered optimal by experts in the US and certainly helps a large number of rls sufferers. Your experience with your GP sadly matches that of many rls sufferers and it is unfortunately necessary to educate yourself about the condition.

    As regards pramipexole, I would say that you have done the right thing to reduce the dose in response to a perception that it is ceasing to be as effective. You have been unusually proactive in this regard, particularly as lowering the dose of any med when symptoms worsen is so counter-intuitive.

    You do not say how you long you have been on the lower dose, or how it is working for you. If it works ok I would be inclined to remain on it for now and only reduce further if your symptoms seem to get worse again. The lower the dose the less likely augmentation is to set in. It may also be easier to come off it eventually if you have been on a lower dose.

  • Have you tried the low fodmap diet yet? Don't mean to be pushy but it's a more worthwhile approach than those stupid bloody pills our neurologist's give us!

  • @ Involuntary dancer -- Super advice👍

  • There r other substances that can trigger RLS. In light of the fact that your RLS started just a year ago (?) be aware that the following are triggers: melatonin, 5htp, HRT, statins, calcium channel blockers, metformin, warfarin, Splenda, Equal, antidepressants, certain antacids, anti-nausea med, antihistamines, salicylates and as you know caffeine. Possibly certain blood pressure meds.

  • Also surgeries, epidurals and spinal problems can trigger.

  • I have seen a list of meds that can eliminate magnesium from your body. Magnesium is linked to keeping your nervous system and your muscles in good function, whereas a shortage of magnesium causes RLS to act up badly. I have certainly experienced this, and when I take magnesium (which I make sure to do now all the time) my RLS is ALMOST non-existent.

    (Unfortunately) one of the triggers can be too much alcohol (who wouldn't like a bit of wine here and there?.) But that means too much not just a little (have to have a few pleasures in life.) Taking enough magnesium can counter this. Otherwise alcohol removes a large amount of magnesium from your body. Look it up.

  • Try the low fodmap diet. Working very nicely for me so far. Still sleeping like shite but the daytime is sooo much easier because I have barely any RLS. It's like a pleasant buzz which feels just incredible. Anyway definitely search it up and see what it's about, it has helped many people with IBS and is helping a few RLS sufferers such as myself.

    ibsdiets.org/fodmap-diet/fo...

  • Hi. I've heard that term FODMAP, and looked at the website, but it doesn't answer my question. What is FODMAP?

  • I won't try and explain it because I don't know much about it other than they are essentially small chains of carbohydrates that most people can tolerate and some can't. Read this:

    fodmapfriendly.com/what-are...

  • That website that I first linked you is just the diet list. On my recent comment I left a link to a website which explains it.

    fodmapfriendly.com/what-are...

  • Backtobasics95,

    Checked out the link. I knew this was some sort of food grouping or type, but had no idea what the acronym FODMAP stood for. Now I know. It stands for something that is also too long and complicated to remember.

    Thanks

    FoxyLocks

  • Yeah you don't really have to remember the acronym. You just have to start! There is a low fodmap diet app by Monash university (costs about $8) which is really good. It has been an absolute life saver for me so far

  • I tried decaffeinated tea. That made no difference. Tea is also high in oxalates and I'm finding a low oxalate diet is beneficial. My nights are much better. Even on 1.25 mg Ropinerole I was getting up from 2 - 3am. Now my legs give me no trouble in the night. I'm now hoping to reduce the Ropinerole.

  • Very good news here. I myself am trying the low fodmap diet. If the low oxalate diet ends up not really working, definitely try the low fodmap one. Let me know how you're doing each week?

  • I will, Backtobasics

  • Thank you very much for all the replies.

    I have only been taking reduced dose last week or so. Some nights are ok some aren't. I started taking some paracetamol some nights with pramipexole. What do you think?

    I don't have rls during the day.

    I had a look at the foodmap diet and realised that I must stop having garlic. :) (I love garlic. ) pretty much everything on that list that I am not allowed to eat. I don't know what I will eat instead. :)

  • "Old hollow" - (I think) had a post about paracetamol and rls a while back. More as a test for whether one actually had rls or neuropathic pain.

    Paracetamol is useful to potentiate opiates and possibly other meds. It is safer to use than Ibobrufen.

  • Yep, garlic is a HUGE trigger for me. So is onion. But there are substitutes. Garlic infused oil is fantastic as well as onion infused oil. For me going on the diet was hard initially but I can't tell you how much research I've done. There are apps to help you out, podcasts to listen to and of course experts to get in contact with for help. At the end of the day you gotta ask yourself, is garlic so good that I can't give it up for a few weeks to try and improve my health? I think you know the answer. Please do let me know if you try it out, I don't have much knowledge of it compared to others but I'd be more than happy to help you out :)

  • Paracetamol is very unlikely to help rls. If you are looking for over the counter remedies, Codeine might help but I'm not sure you can buy it OTC without it being mixed with paracetamol.

  • Codeine is addictive too though isn't it?

  • I've been taking Dihydrocodeine (obviously containing Codeine) with success for about 14 years. I'm trying to work out why all of a sudden it isn't working so well and I need extra to take the RLS away, which it does completely. Luckily, I don't suffer during the day unless I'm trying to rest or travelling or in the theatre - anything that means sitting still.

    The need for extra tablets began when I was given statins by my GP, and low-dose aspirin for circulation problems. Though I stopped both on advice from this site, the problem persists. I've since started the aspirin again, but morning instead of evening.

    I'm sure Dihydrocodeine is addictive - it's a controlled drug because people do abuse it - but I've been on much the same dose for most of the 14 years I've been taking it.

  • Dihydrocodeine can be addictive. If you are taking extra to get relief then i would say you have become tolerant to it, not yet addicted to it. I would see your doctor and tell him/her, because taking more than that has been prescribed is not good. It sounds like you will have to change that med to something else. Did you stop the aspirin and your statins after discussing it with your doctor. ? You shouldnt just stop any med given to you by your doctor on the say so of what people say on the forum. Altho we say what experience we have had with a med, does not mean its the same for you. Something else might be going on with you that we dont know about.

  • I have an appointment in April with the GP who originally agreed to give me Dihydrocodeine, to discuss it, also to ask about ferretin levels etc.

    I am on almost the same dose as when i began, around 14 years ago. I am still below the limit of 8 tabs per day, and when I need to 'top up' I do it with a quarter or a half a tab.

    What is disturbing me is that the dose I take around 12.30 is only lasting until about 3am, then I get the starting surge in my left leg and have to get up and find something to do until I can take the next dose, at about 4.15. I never take it without this interval, no matter how exhausted I am. This has only been happening since the statins. The vibration throughout my body (which i have constantly, though liveable with during the day), is also worse.

    Were it not for this drug I would have ended my life years ago; I have RLS everywhere, it is severe and vicious and I feel bruised and half-mad with it. I assure you I am very responsible with it, as it is so vital to my existance, and that's why my doc prescribes it.

    I also suffer from severe insomnia, which makes things even worse, but being able to lie still and peaceful, even if awake, is the important thing. Luckily, I don't have to hold down a job any more. But I am so very afraid of Dihydrocodiene not working any more.

  • I think what ever we take is addictive but to be honest I don't care as long as it's gone and I sleep and have my life back what suit one dont another so it's try and see All GP no zilt we tell them it's awful complaint to live with but people don't understand think it's funny well it's not I am on good run but nightly dread it will come back

  • Yes, although my understanding is that there is a much lower risk of addiction for those taking codeine and other opioid drugs for relief of rls than when the same drugs are used for pain relief. Dependency is more of a problem.

    All of the pharmaceutical treatments for rls have unfortunate baggage attached. That is one of the hardships of the condition. Another is that even of you are reconciled yourself to taking them you may encounter difficulties finding a Gp who will prescribe them.

  • Agree fully- I don't understand this hangup on " dependency" - it's as if people are confusing dependency with addiction.

    Dependency is a crutch- absolutely nothing wrong with that! It is, in fact, essential for survival and functional wellbeing.

    Addiction is abuse. One is not just dependent on it- one needs more and more of it, not for survival, but to satisfy a overpowering craving that knows no moral limits.

    Chocolate does it for me- and powertools from Aldi!😈

    I'm a sad sad case!😩

  • I'm obviously a sad, sad case also; I love the powertools from Aldi - and chocolate from Lidl (whole nut milk choc is the best there is).

  • Oh yes- that nut chocolate is mindaltering.

  • This is a good point. It's why we have not moved from this area and this surgery.

  • It does seem that people are confusing addiction and dependency. Alot of people HAVE to take meds and they are dependent on the, to survive, so the meds we take we are dependent on them. Addiction is when you find you are taking more of the meds not to get relief from your condition but because you find you are craving them. Thats when you are in trouble, if you ever find you are getting into that situation, then its time to see your doctor before it runs away with you.

    Oh and i have just seen madlegs as said more or less the same thing. lol

  • Look up what we are saying about iron bisglycinate, magnesium and b vitamins, esp folic acid. I have just posted a rather long explanation about magnesium etc, and can't write it again. But the info is there.

  • Thank you.

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