I've posted a few times before on the forum re RLS. I 'manage' my RLS with one 0.18mg Pramipexole tablet in the evening which at least allows me to be symptom-free by bedtime and I know I will sleep a good 5 hours. I do suffer RLS during the course of the day though, and although I know I could ask to go up to a higher dose (which I was taking two years ago) I know all about augmentation now due to this forum. So I am suffering at times during the day and just have to work my way through it - usually by doing something active. What frightens me is being in a situation where I cannot alleviate the symptoms, for instance when I was sitting on a train for a two hour journey and the RLS started just 5 minutes into the journey. When it gets uncomfortable it puts me into a feeling of panic and seems to rise up into my chest. I twitched and shuffled for the whole of that journey, but if we had not been socially distancing on the train and someone had been sitting next to me, I would have had to leave my seat altogether and try to stand for the rest of the journey. I notice now on the leaflet that is with the Pramipexole medication that it is no longer a treatment for RLS - just for Parkinson's. I know I should be asking the doctor for different medication, but since there is no cure and many doctors don't have proper experience in handling this, I am afraid to take something else which may have other problematic side effects. I know the alternatives, I read the comments and questions here on the forum, but I am afraid.
Has anyone ever tried fasting completely for a couple of days, drinking only water, to see if it improves the condition, and then maybe reintroducing certain foods slowly to see if anything should be eliminated? Or is it purely a malfunction in the brain?
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Sueloops
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Hi, if you're afraid to take any medication at all then there are non-pharmaceutical remedies you can try.
I will say however that all RLS medications have side effects and complications, but in terms of these it currently appears that pramipexole is the worst. Others may have less risks.
Note that non-drug RLS remedies, generally may not be as effective as drugs, may take longer to have effect or may not work at all. They may have no evidence to support their effectiveness.
The first treatment that should be considered for RLS is iron therapy. Depending on the exact treatment iron therapy can be successful for up to 60% of people.
There are also some food supplements that ARE known to help with RLS if you have a deficiency, but not if you don't. These include vitamin B12 vitamin D and possibly magnesium.
You may receive lots of suggestions for other supplements which people find work for them. It's best to see if a LOT of people say they work, then it's more likely to work for you.
The next remedy for RLS is not to look at what could make it better, but what could make it worse. These are called triggers or excerbating factors. Then avoid them if possible.
The most apparent exacerbating factors are other medications. Many common medicines can do this, e.g. antidepressants, sedating antihistamines, anti nausea medicines, some antacids and many others.
Food is a possible factor, either as an exacerbating factor or because some essential nutrients are missing.
Hence, if you can, follow all the usual advice on a healthy diet.
Inflammation is a factor in RLS, so if you have a known inflammatory condition or inflammation you don't know about, then you could try to remedy this.
Bowel inflammation is particularly associated with RLS so if you have IBS or SIBO then treatment and relevent dietary advice could help. If you have a H Pylori infection, this can be treated with antibiotics. General gut health can be promoted with probiotics.
You may have a food sensitivity, this is not necessarily an allergy but can cause chronic inflammation. Different people are sensitive to different things. Examples are gluten or lactose, but there are others.
One way of finding out is to keep a diary. This may identify triggers, i.e. things that quickly make RLS worse, but have only a short term effect.
Sugar, alcohol and caffeine are known triggers.
Another strategy is to eliminate all suspects, then re-introduce them one by one.
Unfortunately, chronic (long lasting) inflammation may take time to resolve and may take time to reappear.
I do believe you can get sensitivity testing.
Generally speaking, it is known that too much carbohydrate in the diet can cause chronic inflammation. The lower the better, as low as you can tolerate.
A low oxalate diet can help or an anti-inflammatory diet.
Taking a strong antioxidant can help e.g. celery juice.
Lastly, hypoxia (lack of oxygen) is possibly a factor in RLS. Certainly it can be exacerbated by poor circulation. Hence some pdople find compression stockings helpful.
I hope this goes some way to answering your question.
Manerva thank you for such a detailed response - you have been so helpful. I have decided to do a few things and see what effect they have on my RLS, and to help with this I am going to keep a diary as you suggest. I am cutting out caffeine for a start, and this morning I bought decaffeinated coffee and tea, which are both a first for me. Then I'm cutting right back on refined sugar and cutting out alcohol entirely. I was taking 420mgs per day of Ferrous Fumerate when I was on a higher dose of Pramipexole a couple of years ago, but the doctor took me off them after about 6 months and said that I wouldnt need to take them any more. However, my blood hasn't been properly checked since so I think I'll arrange a telephone appointment and ask if I can call in to see the nurse to have this done. There is so much I don't understand about my own RLS and keeping the diary might shed some light on it. For instance I love hiking in the countryside - and after walking 7 miles you'd think my legs were ready for a rest - but no, that's exactly when they play up. Then occasionally I can go one or two days with no symptoms at all. So strange. I will let you know how I get on. Thank you again!
Iron deficiency is the main cause of RLS but it"s Brain Iron Deficiency, (BID) not iron deficiency anaemia. The two can be quite separate from each other.
If a doctor says your iron levels are "normal" or " OK" they often mean you don't have anaemia. I'm guessing "you don't need iron anymore" is more or less the same thing.
However if you don't have anaemia, it doesn't mean you don't have BID.
The recommended way of detecting this is to have all the iron blood tests including serum iron, transferrin and ferritin.
Significantly, for somebody with RLS ferritin should be at least 200. If it's not, then it can be of benefit for you to have iron therapy.
The recommendations are, if your ferritin is less than 75 then take an oral iron supplement.
If it's over 75, you may need an IV iron infusion.
See the link I gave you previously. Here it is again
I suggest you have the blood test done and make sure you get the actual numerical results. Ignore any "normal", "OK" or "you don't need iron" remarks. If your ferritin is below 75 start taking a supplement.
You don't need a prescription for this, you don't a doctors permission.
A popular supplement is over the counter "Gentle iron", ferrous bisglycinate.
To ensure you absorb as much of this as possible -
Take it 30 mins before or 2 hours after eating
Take a vit C tablet or glass of orange at the same time.
Take a double dose, but only take it once every alternate day, NOT daily.
Some exercise is good for RLS, but too much can make it worse. Hence it sounds as if walking 7 miles is too much for you.
Thank you again. Gosh, there is quite a lot written on the Internet about Brain Iron Deficiency. Maybe I am experiencing this. I'm feeling a bit depressed about the walking - it's something I have always loved to do and if it turns out to be bad for this condition when I do a long walk, then that's something else I love which I might have to give up.
Sue, do take part in the campaign to educate doctors about RLS. If they are taught about it ( there's absolutely zero teaching at present) they will be better placed to help us.It's clear you're still suffering severe augmentation. To get relief from that daytime RLS you will have to consider getting off that last dose of Pramipexole. It's hellish, but possible with the help of an opioid like Tramadol or oxynorm and cannabis.
Here's the algorithm for augmentation which you could show to your GP. I'd say you're in the severe augmentation stage.
I find that if I get rls symptoms during the daytime, it's usually when I've eaten too much sugar, I take a double strength ibuprofen pill. This more often than not does the trick.
Yes, that sounds right. You have a choice, enjoy the sugar and suffer the RLS or have no RLS and be miserable!
I'm joking, there are other pleasures.
Ibuprofen can theoretically help with RLS as inflammation is a factor in RLS. If inflammation is a factor in your case then an anti-inflammatory medicine, e.g. ibuprofen can help.
Not advisable to take it regularly or frequently however.
I hope you mean a double dose (2 tablets) of 200mg, the max dose at any one time should not exceed 400mg. I use 400mg tablets, I only ever take one.
I take one 400mg when I need to. I also get a bad back for which this helps. I think my back pain and rls are connected and both caused or made worse by inflammation. Funnily enough I seem to get rls more in my ankles rather than elsewhere now and I find rubbing ibuprofen gel in them also helps
I think sometimes, as WE get older, (I'm getting older), we tend to get all sorts of muscular, skeletal or neurological "twinges" which, if we have RLS we tend to assume they're all part of the RLS.
They MAY be part of it, they may only be related or they may be something completely different.
I'm not automatically assuming YOU're older by the way!!!
Depending on what the cause of your back pain is it may be related to your RLS. If it's not muscular pain, it may be due to skeletal changes causing neuropathic pain.
If you have any neuropathy it can exacerbate RLS.
One feature of neuropathic pain is that the neuropathy isn't necessarily where we feel the pain. Example I feel neuropathic pain in my left ankle and thigh. There's nothing wrong with nerves in either these places, but the nerves coming from them get trapped in my lumbar spine.
Bear with me!
It's possibly the same with RLS. Just my conjecture. We get sensations in the legs, but the problem is really in the brain, not the legs.
Inflammation can generally affect RLS e.g. by affecting iron metabolism.
I'm getting there!
If you only get "RLS" symptoms in your ankles, then it may be that there's an issue only in your ankles. Generalised inflammation would probably affect a wider area.
In addition whereas ibuprofen taken orally will affect generalised inflammation, if you only put it on your ankles, it will really only affect your ankles!
Summary - what may be possible is that your back pain and RLS are related, but your ankles aren't.
However, please do be wary of anything I might write, sometimes I write complete rubbish.
Conclusion, if something works for you and isn't doing any harm, why stop doing it?
Interesting. The reason I'm connecting my back pain to rls is that when it was bad, when I was taking pramipexole, I could feel the creeping sensations originating from my back when I was sitting on the sofa. It would then seem to spread to my legs and kick off, literally. I discovered if I used a massager on the base of my spine it would help somewhat and sometimes go. I also used gel on my back then and this too sometimes helped. This was before I started augmenting. Long story short I stopped pramipexole and am now taking gabapentin, if I do get any rls symptoms now after triggers I just get it in my ankles. I am fortunate in that it's under control at the moment. I know how bad it can get
That' s great. Similar story to my own, took pramipexole, suffered augmentation, weaned off and started on gabapentin. Symptoms now satisfactorily controlled.
I do have a definite spinal neuropathy though, diagnosed by spinal MRI and more recently a bone scan. I get pain in my left thigh and ankle, but gabapentin also helps this.
I have had RLS for about 60+ years only slept about 3hours a night I now take 3- 25mg Pramipexole a night with some help, i also take mild medical mj to help. It does help me to sleep most nights.
Hi, just to clarify, Sueloops writes she is taking 0.18 mg of pramipexole which is equivalent to a third of what you're taking. She does say she has some problems with it and she does mention augmentation.
I think in that case she realises she shouldn't increase the dose and really wants to stop taking pramipexole because it's that which is causing the augmentation.
I see you are currently taking 0.75mg pramipexole and it appears it isn't fully working. This may be "loss of efficacy". I'm only guessing, but I imagine this has happened before when you were on a lower dose and your Dr increased the dose.
In your situation I would predict that the pramipexole will continue to fail. You cannot increase the dose further because you are now on the maximum dose.
Further, increasing the dose when it fails is not a good idea as it rauses the risk of augmentation. First augmentation usually occurs after a raise in dosage. Second the higher the dose, the higher the risk.
It cannot be predicted for any individual, but you may have augmentation already, I couldn't say. However, I think it's almost inevitable you will get it.
The best advice even for somebody on a relatively low dose of pramipexole who has augmentation is to withdraw from the drug.
For your sake I suggest you read about dopaminergic augmentation.
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Pramipexole not working now. 
Tried going privately to see a neurologist
RLS during in the morning and during the day when trying to take a nap?
Has anybody tried Light Therapy?
