Dr Martin Scurr has been treating patients for more than 30 years and is one of the country's leading GPs. Here he offers advice to a patient suffering from restless legs syndrome.
I have suffered with restless legs syndrome for several years. Every doctor I've consulted tells me that there is no cure, but can this possibly be correct? I spend several hours almost every nightwalking about unable to lie still in bed, which of course causes extreme tiredness during daytime hours. I would be so grateful for your advice.
Dr Scurr says... This is a miserable affliction and, sadly, not all doctors recognise the true extent of the distress it can cause. Restless legs syndrome affects 5 to 10 per cent of the population and is more common in women, usually starting in middle age.
The symptoms you know all too well: a burning, itching irritability and aching sensation - particularly when the legs are at rest, at night when lying down, or when you're trying to get off to sleep. The only way to relieve this is to keep moving constantly.
In most cases I've seen, there's no identifiable cause, although in a few it occurs as a complication of another health condition.
This can include iron deficiency anaemia (such as that caused by heavy periods around the time of the menopause), kidney failure, diabetes and coeliac disease, to name a few.
But in all of these, restless legs is a secondary state of affairs, so it's the main problem that needs to be treated, not the restless legs.
It's a condition that can vary hugely in severity. Some patients have it mildly, while others can be severely troubled with no let-up at all. And when it's this bad, the sleep disruption has a knock-on effect on daytime activities, resulting in a toll on your ability to work and your personal life.
Although the exact cause is unknown, it is thought the condition is associated with an imbalance of chemicals in the brain, such as dopamine, which is related to movement.
Until recently, many patients have been given tranquillisers or sleeping pills to try to suppress the symptoms, but this does not work. Now it is thought the treatments most likely to work are medicines called dopamine agonists, which mimic the effects of the chemical dopamine. For my patients, I favour pramipexole.
While dopamine agonists are the same medicines used in the treat-ment of Parkinson's disease, let me reassure you that restless legs are not a form of Parkinson's, and nor do they lead to it.
But the benefit of dopamine agonists lasts only as long as the pills are continued.
Unfortunately, this means your doctors have all been correct - there is no cure, only effective control. But please be reassured that there are no dangers taking this treatment long-term.
It is worth adopting a few lifestyle changes which may also help ease your distress. Moderate daily exercise helps some people, as may a sensible balanced diet. Massage may also suppress the symptoms and help you get that much-needed sleep.
But, most important, make sure your doctor has ruled out the possibility of the other conditions I mentioned earlier. This will involve a careful examination of your history and symptoms - possibly even blood tests. The diagnosis of restless legs syndrome can be made only when there is no other, remediable cause detected
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daisyw
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or is this basically the article you copy and pasted?
I have read and studied many things to the contrary to what this doctor says about long term use of dopamine agonists. It is not that simple or that cut and tdried. he says "I can reassure you" that tis is safe? They have never done anything longer than a 5 yr study on these meds, and in the US the Federal Drug Administration just put another health warning on Pramipexole-"ncreased risk of heart damage and heart failure." Granted, doses for RLS are a lot less than the dose for treating Parkinson's, so less likely for damage to occur, but there is no long term study to quote. and, it always bugs me when the person being interviewed says"Just make some easy lifestyle changes." Our whole lifestyle is changed because of RLS, and most of us have tried every trick in the book. But, this doctor cannot say that is true about the dopamine meds, because no proof.
You're quite right Nightdancer, there are no long term trials for dopamine agonists, and to say otherwise is totally irresponsible, misleading and shows lack of knowledge. Even if it's not actually dangerous, the medication itself can cause rebound problems, as you know. I wouldn't be too concerned though, it has come from the daily mail where you get little evidence and a lot of pseaudo science
I'm so sorry Daisy. I guess reading it cold does come across as harsh. I'm so sorry, I really shouldn't post during a severe rls attack. My ropinerole didn't work at all last night
My own GP just told me to relax/de_stress/brushed me aside. So I almost thought I was making a fuss. It wasn't until I ended up in a&e collapsed with exhaustion, symtoms like a stroke, that I actually told someone about my legs! He said "oh we can help with that!" I nearly hugged him!
We do need to get it out there, especially to GPs.
I don't read most of the press by the way, they are all just reporting or passing on gossip rather than researching and being informative
I also probably overreacted and I'm sorry because it's not in my nature, but when the RLS is at it's worst it's difficult to be ''our usual selves''
It's unfortunate that most of the info we have access to is unproved, but I think (and hope) more notice and research is being taken of the condition. The trouble is every case seems to be different!!
I hope you feel a little better soon and that things improve for you
take care
I suppose even tho not all of what he says is correct, (we who have taken or are taking the dopamine agonists know differently) for the most he is a doctor who DOES reconise the condition. He just needs to be corrected on the dopamine meds. the augmentation they cause for all most everyone who tries them. That is not mentioned either, so long term treatment for using them is not an option for most because of the augmentation...
I agree. I should not post late at night, either. lol Yes, it is great that he is a doctor that does not laugh when he sees a patient with RLS, and that he recognizes as a valid disease, which IS half the battle. Both halves of the battle can take a long time, so always better when you get a doctor who knows, or a team of doctors. And, when we are exhausted, it is the little details that always bug me. But, I am in the US, though, so some things are quite different than in the UK.
Hi everybody am enjoying the different opinions. The medical profession do a great job,i am on ropinorole two just before bedtime and most nights i get at least six hours undisturbed sleep, i also take a multivitimin high in iron, which i feel helps i buy it from a chemist £1,00 for twenty five. RLS is also connected to low magnesium, which i take by eating foods high in iron and magnesium, I am always looking at alternative treatment, to enhance my body to do it's job , give it a little hand now and then. It's not important to me weather it's genetic or hereditory, i'm interested in the here and now, ivory soap is also supposed to be good, place it in your bed close to your feet, i have not tried it yet, but i'm told it does work. Well guys and gals hope i have ben helpful , chat soon .
i wouldnt bother with the soap trick, it does not work at all, although your feet will smell nice in the morning, we have heard this over and over again, but not one person says it works
I agree, also whether you go along with him or not at least he recognises that there is a problem which is about 40% of the moans about GP's on this blog
Hi all happy 5 a.m. in the morning. I have been on the Neuropa patches for about a week or so. Definitely better than the Requip. However, my sleep ;patterns are still rock and roll. Does anyone take a sleepibng aid that helps but doesnt leave a hangover? Is there such a med? Let me know. than
Yes, I take Clonazepam two 0.5mg at night (low dose) about an hour or so before I go to bed. It's the best night's sleep for me and I do not wake up groggy in the morning, I am wide awake. You may or may not need to take a stronger dose it depends on how bad your symptoms are and what other medication you are on. I do not take any other medication, even though I still wake up with achey legs but that is a small price to pay, as long as I can sleep I am relatively happy. Speak to your Doctor about them and see whether he/she thinks they are suitable for you.
hi all . Cant believe how many of you sufferers out there!! Found this site by accident and have enjoyed reading everyones comments . Ive had rls many yrs but only the last yr or so due to a back injury i was put on Tramadol , wow that worked wonders 4 my rls but since havin to stop takin them its come back with a vengence . due to see doc on fri to see wat me blood test results are. It ll be interesting to see wat he prescribes!! Thank u everyone for your info on this terrible affliction . chocchip
I`ve read all about dopamine antagonists, & also the common side effects such as vomiting, which would be worse than the condition that they`re meant to treat.If I were a hindu, & believed in reincarnation & karma, I would assume that RLS is a punishment for sins committed in a past life. It certainly feels as if I`m being punished when I can`t get a decent night`s rest, & I`m yhinking "what could I pssibly have done to deserve this?.
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