Hi all - I’m soon to move house, and so with that will be getting a new GP. My previous GP just put me on a sleep study for RLS, and was advising on some medication I’d been warned about here.
Approaching my new GP, what’s the current medication people suggest here for RLS? I broke both my elbows a few years back (very embarrassing!) and was prescribed codeine for it which gave me the best night’s sleep I’ve ever known, but don’t think I’ll be getting an opioid prescription in the UK for RLS, I don’t think?
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aluminumium
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Hi, I hope your new GP is knowledgeable about RLS and willibg to discuss options with you.
Or at least, is willing to discuss options, many doctors, unless they've taken a special interest in the condition aren't trained to deal with RLS.
The first thing to consider if you've been diagnosed with RLS is if you have iron deficiency which is the main casue of RLS.
Therefore you should have had or should have blood tests for serum iron, transferrin saturation and ferritin.
If your serum iron and transferrin sat are low then you probably have iron deficiency anaemia. Treating this can relieve RLS.
However, if both these are OK and your ferritin is below 75 then you may have Brain Iron Deficiency (BID), the cause of RLS. In this case you can start taking an oral iron supplement.
NOTE : if your GP says your ferritin is "OK" or "normal" this isn't sufficient information for somebody with RLS.
It is better in many respects to take an over the counter supplement rather than a prescription one.
See this link, which you can show to your new GP if necessary
The second thing is to consider is if you have anything that may be aggravating your RLS i.e. making it worse. Many things can do this including any other medications you may be taking. The main medications to avoid are antidepresants and sedating antihistamines. There are many others.
What you eat or drink may be making your RLS worse. Sorry to say you should abvoid alcohol and sugar. You may have a food sensitivity which may be casuing inflammation and inflammation is a mediating factor in RLS.
Medication is available for RLS but shouild be avoided if possible becaue although medications can be effective, they all have some undesirable consequences.
NOTE then when prescribing a medication, as is the same for any treatment your GP requires your informed consent to take it. THey cannot dictate to you, coerce you or in anyt way put pressure on you to tke a particular medicine. They also need tomensure that before giving consent you are informed about the medication. This includes
B - the benefit of the drug
R - the risks, side effects or complications
A - alternatives, what other drugs could be prescribed.
N - nothing, what happens if you take nothing.
GPS who aren't up to date with developments with RLS tend to prescribe a "Dopamine Agonist" (DA). These are pramipexole, ropinirole or rotigotine (neupro).
However, they often fail to warn you of the major complications, these drugs can cause.
They also often fail to tell you that there are alternatives, the recommended ones being prgabalin or gabapentin.
The major complications, besides side effects that DAs can cause are Dopaminergic Augmentation and Impulse Control Disorder (ICD). ICD isn't too common luckily but is a very serious condition. Augmentation is very common, one could say, with time, virtually inevitable.
For this reason, DAs are no longer recommended as the first treatment for RLS.
Codeine can be prescribed intermittently alongside other RLS medications if RLS is accompanied by pain. However, it is not the best opioid for RLS, the opioids prescribed for "referactory" RLS (when first line treatments have failed) are more potent.
The UK National Institute for Health and Care Excellence (NICE) have publsikhd evidence based guidance for GPs on the management of RLS. It's possible that your new GP may not be aware of this, the NICE publishes a lot!
I'm afraid that if you have RLS, you not only have to contend with the codnition, you also have to contend with the lack of knowledge that surrounds it.
I suggest you follow the link below to the NICE guideance and familiarise yourself with it.
Manerva, you're an absolute saint - this is just the information I was looking for. I did have an iron test done which did show my ferritin was more than alright - but one thing I've completely overlooked is that I have gone onto antidepressants and so do need to bring that up with them. Thank you so much!
Hi my partner has high hemoglobin not low and has very bad restless body and legs hes on dialysis the only thing that helps is oxycodone not good but tried a lot of other natural products .Hes thinking of trying tramadole again for RLS
Quite a few are on opioids in the UK. I developed severe augmentation on Ropinirole and tramadol and gabapentin didn't work for me. I'm on Oxycontin. Several have managed to get Temgesic.It will depend on your new GP. Manerva has listed all the relevant info.
Hi, I too did a sleep study which showed I had a combination of RLS and PLMS. I now have a combination of rotigotine patches and gabapentin at night, which works brilliantly for me and I'm sleeping solidly for the first time in years. I took codeine through 2 pregnancies and it did help a bit, but I wonder if a GP would be reluctant to prescribe opiates long term. My best advice would be to ask for a referral to a neurologist that specialises in RLS.
After my sleep study, I was put on pramipexol and gabapentin. After 7 years and a weight gain of 60 pounds, I am slowly reducing the pramipexol from 2.0 mg/day to 0. After 16 weeks reducing at 0.125/2 weeks, I am at half or 1.0mg/day and I have lost 10 pounds. I think the reductions cause sleep problems after 2-3 days of each reduction. The weight gain has increased my sleep apnea events. I wear Based on my experience and this website STAY AWAY FROM PRAMIPEXOL AND MIRAPEX. You are correct, Manerva should be either canonized or knighted.
I have a similar history and was prescribed codeine for back pain, then developed RLS. Changed to Tramadol which helped for a while, but then the RLS came back. So I continued to use Tramadol for a year or so and I think that while it helped with RLS symptomatically, the regular use of any analgesic was also the root cause of my RLS. As time went by, I needed a higher and higher dose of the painkiller to suppress the RLS which got worse and worse and then it didn't help any more and I was drugged to the eyeballs. So then I took an iron supplement Ferrous Sulphate 200mg X three times a day for two months. That dampened down the RLS enough for me to stop the painkiller altogether. Changed to the slow release Ferrograd 375mg one a day for a few weeks and then stopped that too and the RLS has stayed away - happy chappie! Good luck aluminumium.
Hi alminumium, on the rls-ul.org, there is a page specifically for gp's. Nice have been pushing to stop codiene. But my nurologist prescribes it 60mgs at night, but I am also on pramipexole & pregablin at night. Still have odd nights when sleep is disturbed. Or the dreams so true to life but actually arn't. One thing gp's don't like is you telling them, but I learnt if you go armed with info they have to listen. Good luck
NICE has issued guidance that states that if somebody is diagnosed with chronic pain then they should not be started on any one of a list of drugs which includes opioids and gabapentinoids.
The only drugs recommended for chronic pain are antidepressants.
This guidance does not apply to RLS, but is causing some confusion.
RLS is NOT chronic pain. The NICE guidance for RLS (2020), still recommends gabapentinoids and codeine for RLS.
The new guidance (for chronic pain) also says that if anyone is already taking one of the blacklisted drugs, then a withdrawal plan should be discussed with them.
Some people it seems think this means that you can be "forced" off these drugs, but the guidance does not give doctors the mandate to do that.
I am aware of nice, but some gp's are taking it as it has to stop. Antidepressants aren't the answer to pain. They don't stop the pain. RLS is not researched as much or have as much push as other health issues at present. Let's just hope it comes sooner rather than later.
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