I take Quetiapine a anti-psychotic drug for mental health. This drug works brilliantly but has the side effect of producing really severe RLS.
Ive tried many things to combat the RLS but eventually I settled on Codeine. This was because it is referenced in a UK NHS article ( nhs.uk/conditions/restless-... )
Obviously codeine is an opiod and has its own risks. However, I can say that the Codeine has stopped my RLS completely. I don't suffer any symptoms at all. If I stop taking Codeine the RLS returns.
I am posting this just to provide feedback on what works for me personally in case anyone is at the end of their tether and really struggling to find a solution.
Codeine may work for you as well.
Codeine is obviously addictive but taken responsibly it works fine.
I take x6 30mg tablets a day.
Anyone wants any more information let me know.
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batesm0t3l
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Thanks. I get some people may be worried about the risks of Coedine. However, taken responsibly it can be a great solution to RLS. NHS article states
"A mild opiate-based painkiller, such as codeine, may be prescribed to relieve pain associated with restless legs syndrome."
This is great, I'm glad to hear you found this solution and thank you for sharing. It is quite true that opiates can relieve RLS symptoms.
You also recognise that there are risks with taking opiates which is good. One risk is dependence and addiction. If you take it regularly then you will definitely become dependent. This means that you must never stop taking it suddenly because you will have withdrawal effects.
Never exceed the prescribed dose, even if your RLS symptoms "break through". Any changes need to be agreed with your doctor.
It can also cause constipation, so you ought to take steps to prevent this.
Codeine is a "mild" opiate and some RLS sufferers take a more potent opiate. One such opiate Oxycodone is actually licensed for RLS in the UK, so is known to work.
Your type of RLS appears to be what is called "secondary" RLS i.e. it's induced by the Quetiapine.
I suffer from primary idiopathic RLS which is a genetic disorder and I take one of the other drugs mentioned on the website you give a link to.
Normally, anyone with primary idiopathic RLS tries these other treatments first and only use an opiate if the "first line" treatments fail.
I'm not quite understanding. I mean how do you know that yours is primary ? I want to find about myself too. If its secondary, does it go away ?. I have been thinking about my RLS, which was not really an issue only a few months ago but now I'm dependent on Pramipexole. Also, my ferretin has dropped to 20 from 35 despite taking Iron Bisgylcinate, which is just sad.
When I first got RLS I did a lot of research and was able to identify that there is a link between Quetiapine and RLS. Mine is secondary because its caused directly by taking Quetiapine. If I stopped taking Quetiapine the RLS would stop but unfortunately for Mental Health reasons I cannot. In terms of does it go away, as long as I take Quetiapine if I stop taking Coedine the RLS comes straight back. However, while Im on Coedine I get no RLS symptoms.
Primary idiopathic RLS is a genetic disorder which is an inherited "predisposition" to developing it.
Secondary, RLS is RLS - like symptoms that occur because of another, underlying, disease or condition that causes the symptoms.
I was diagnosed as having idiopathic RLS by a neurologist. This diagnosis was based on a Family History, a Previous Medical history, routine blood tests and a neurological examination.
In my case, my father had it, symptoms started fairly early in life, my 30's and I had no histlory of any condition that could cause it. Blood tests showed I had no underlying condition that could cause it. The neurological examination showed nothing of note. By a process of elimination I had idiopathic RLS which actually means, no apparent cause.
If any underlying condition had been detected and it was the sole cause of my RLS, then if it could have been treated successfully, then my RLS would disappear.
If an underlying cause cannot be treated successfully then it will have to be treated symptomatically, i.e. more or less the same as idiopathic RLS.
Just to stress, this is a very simple explanation. In practice, it's not so simple and everybody needs to be treated as an individual.
As regards idiopathic RLS, the genetic element is not a single gene so this means
- not everyone with the genetic predisposition actually develops RLS
- just because near relatives are known to have it, doesn't necsssarily mean you have it.
- just because no near relatives are known to have it, doesn't mean that you won't have it.
- it is possible that you could have idiopathic RLS AND an underlying cause of secondary RLS.
There are several factors which may make RLS more or less severe which may be common to both forms. Iron is one, more on this later.
Including iron there are various "micronutrients" which can affect RLS symptoms. This includes some metals/minerals and some vitamins including -
Deficiencies of magnesium, potassium, vitamn B12, or vitamin D.
Too much Manganese or possibly too much Copper,
NOTE - improving the levels of these will relieve RLS symptoms but not necessarily totally and this may be only if you have a deficiency. If you don't have a deficiency then it may make no difference.
It's unlikely for a manganese or copper excess to occur.
It's a good idea then to have a blood test for these and only take supplements if you do have a deficiency. You can of course check for dietary sources of these.
It's especially not a good idea to take potassium supplements if you have heart or kidney disease.
You may have already been tested for the common underlying conditions that cause secondary RLS. You could ASK for tests, but for some of these it may already be obvious that you DO NOT. You don't need testing for these.
They include =
During or after pregnancy
Diabetes
Small fibre neuropathy
Other neuropathy
Hypothyroid
Iron deficiency Anaemia or Pernicious Anaemia
End stage kidney failure.
Gluten or Lactose intolerance
NOTE - in some cases of secondary RLS it is not possible to treat the underlying cause, because the underlying condition may be irreversible e.g. Small fibre neuropathy.
Iron
In simple terms, iron is treated differently in different parts of the body. It's treated differently in the blood than it is in the brain.
RLS is associated with a deficiency of iron in the brain, brain iron deficiency (BID).
Iron deficiency aneamia : a deficiency in the blood can lead to BID because the body gives precedence to blood iron levels.
However BID can occur without a lack in the blood. and this is where Ferritin comes in because this an indication of the amount of "stored" iron (i.e. extra to the iron needed by blood). This can affect BID. This is why it's good to raise Ferritin levels.
There are several ways you can do it
1 Increase the amount in your diet : iron rich foods
2 Oral supplements
3 Intravenous infusions.
Unfortunately, raising the Ferritin level is not easy.
There are two sources of dietary iron know as non heme iron and heme iron.
Heme iron is only found in meat and is more easily absorbed than non heme iron.
No heme is found in a vegetarian/vegan diet and non heme iron is less easily absorbed.
You could research which particular food sources are richer in iron. However to some extent the problem with this is the same problem that occurs with supplements.
As an analogy taking extra iron orally (food or supplements) may be like pouring water into a bucket that's already full. In this case the bucket is your blood.
When there is sufficient iron in the blood, you will only absorb enough from the gut to replace the small amounts that have been lost. This is regulated by a protein called Hepcidin. As the amount of iron in your blood goes up, then Hepcidin levels go up and this prevents further iron being absorbed. It just "passes" through you. This is DESPITE there being BID and low Ferritin.
Another factor affecting iron absorbption is the acidiity in the gut.
This is why some experts advise IV iron infusions as this bypasses this limitation. The problem wkith this is, depedning ko where you live e.g. UK or US you may or may not be able to access IV iron. You will also find contradictory information about how safe it is and there are various factors affecting this.
To increase the chances of increasing Ferritin by taking extra iron orally there are some things you can do.
1 Make sure any source of iron you take (food and/or supplement) is Heme iron. That is unless you have a moral reason for not using meat products.
2 Only take the supplement every other day. Unless it upsets your stomach/bowels you can take double the daily dose. This may help "fool" the Hepcidin system into allowing more of it to be absorbed.
3 Always take a drink of orange juice or a vitamin C tablet when you take the supplement , ((Ascorbic Acid), on an empty stomach.
My GP initially didn't agree that Codeine would help. Unfortunately these days GPs see opiate and panic. However, I did my research and presented them with what Id learned/found. As a result since I started Coedine its stopped my RLS, I get no symptoms what so ever and get uninterrupted restful sleep. I am on the same dose now as I was when I started. As time has gone by I haven't had to increase the dose in any way. So at the moment its all good.
I plan to do that too. I've been on Pramipex but I absolutely hate that I have to take it at the same time and if I forget my night gets destroyed doesn't matter if I'm out or at home.
How long have you been taking codeine for ? What dose ?
Glad you have relief. Long may it continue for you.
Firstly other than mental health issues, Im in perfect health. I don't have any other conditions. The RLS is caused by Quetiapine which is my mental health medication.
I started my Codeine dose about 2 years ago now. I take 6 , 30mg tablets a day. As a result I dont get any RLS symptoms.
If I stop the Coedine Im guaranteed to get crippling RLS.
People will see the word codeine and suddenly get alarm bells ringing because its an opiate and addictive. However, I couldn't cope with RLS, it was crippling and I was in massive pain and at the end of tether.
I haven't increased my dose over the last 2 years. I take now what I did the first day I tried it.
Im aware that my body probably has a dependency on it now, but TBH, I dont care. I found a solution that works for me and gives me brilliant quality of life where the RLS is concerned.
Every year I have blood tests to check my live function and kidneys etc and the codeine hasn't caused any damage at all. My GPs opinion now is we found a solution that works so they see no reason to change it.
The use of Coedine is referenced in the UK NHS Medical article under treatment :
If definitely works but the "war on opiates" we keep hearing about can make it harder to get it approved by a doctor which is a shame. My view is like any drug if your sensible and responsible it's fine.
I was taking zapain but I seperated the paracitamol and codeine. I take 6 to 8 codein a day and vertually no paracitamol. This may seem a lot but I am 65 and rsl symtoms have got worse since birth.
Thanks for posting this. My daughter has been on Quetiapine and did have RLS symptoms. She has come off it and instead she is taking Fluoxetine. She also takes aripiprazole .The RLS symptoms are now much less troubling.
I have a Neupro patch and use 200mg of Tramulief. I also take 450mg of Pregabalin. Despite all this the RLS is breaking through. I have a prescription for Zapain which is a 30/500 codeine and paracetamol mix. I wonder whether adding these to the cocktail may help? I see a neurologist next week so this can be discussed then
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