What is restless legs syndrome and why does it matter? - BBC REEL

hi i'm howard and i make stuff for bbc real for a long time now can't quite remember when it first started my legs and arms seem to have been gaining minds of their own you know i'm not talking about learning algebra or reciting nietzsche i mean they seem hell bent on making me want to go and run a marathon in the middle of the night or go and play tennis when i'd rather be in bed surely not i hear you cry that's impossible cut down on the caffeine and the sugar well it's actually a condition of the nervous system called restless leg syndrome or rls aka willis ekbond disease it can affect around 10 of people globally there's actually a bit more to rls than its name suggests i also get it in my arms and normally only in the evening and at night it can be unbearable and overwhelming thankfully mine is quite mild but it can last for hours it can lead to very little sleep and become pretty debilitating especially for those who suffer from it very badly the causes could point towards some genetic factors at play professor claudia trenkwelder is a pioneer in rls research she suggests that those who develop it may already carry some genetic traits that may make symptoms more likely to develop for developing restless leg syndrome i think you need two factors you need a genetic background and there are up to 23 genes variants known now you need at least one or maybe two or an interplay between some of these variants but then there is also the need for an environmental factor julian spinks is a general practice doctor in england and the chair of the charity rls uk he also suffers from rls himself there are two main variants of restless leg syndrome the first is a standalone condition where people tend to develop it most severely in middle life and onwards but about a third of people say that they developed it before the age of 20. so it can be a lifelong condition the second variant of it is secondary restless leg syndrome and that's where there's another condition which tends to cause it and the most common ones of those are iron deficiency chronic kidney disease and unfortunately some women develop it during pregnancy and it only goes away when the pregnancy is finished i got in touch with another sufferer of rls julie gould to compare our experiences while not a medical professional julie is what's called a patient expert and recently had an article published in the lancet calling for better training in rls symptoms for uk healthcare professionals imagine i was a wire cog being wound up wound up wound up as tightly as tightly as can be and then no release that's the nearest i can equate it to someone winding my body up so tightly that the only thing you can do is let the energy release but it just didn't release so it was unbearable and an internal feeling of just wanting to my whole body wanting to scream and the only release from that tension was to physically harm myself because the pain was preferable to that unbearable tense wound up creepy crawly sensation it's impossible to describe now there are a host of treatments available depending on severity first of all sleep hygiene and a good night's sleep is vital some people also find things like hot baths or showers or even cold showers can make a difference so we will start with that because we want to try and reserve the medication for later amongst the medications uh the one that's been used the most are called dopamine agonists and these are a group of drugs including primary pixel repinerole and a patch called when i was first diagnosed i was put on diazepam for about six weeks and it worked very well then it stopped working and my ms neurologist at the time said there was a wonderful new drug available called ropinarol and that he would prescribe that sure enough it was miraculous first night i took it it stopped all those horrible unbearable sensations which i was been getting every night and i could sleep fantastic fast forward 14 15 years and augmentation of symptoms set in the doctors just shook their heads didn't know what i was talking about and i said it's got worse it's become so intense it's unbearable i can't sit still in the day ropinarole is from a group of drugs called dopamine agonists now this kind of drug can help reduce rls symptoms in the short term but has been found to cause augmentation the worsening of symptoms in the longer term julie went on to explain that after being prescribed further drugs for her condition her symptoms only got worse the only thing you can do is to slowly reduce the medication and you'll probably need opioids to help augmentation and withdrawal from dopamine agonists it was the most horrendous experience of my life i nearly did not make it through i seriously considered suicide i'm a very logical person i'm a lawyer i've never been depressed in my life never suffered anxiety but it was so utterly unbearable that you literally get non-stop rls symptoms in every part of your body 24 7. my symptoms are miraculously zero because i've done all my research and i've got on the buprenorphine which has been absolutely miraculous unfortunately when you look at the guidance of the uk it's still pushing people towards dopamine agonists and the latest international guidelines from the mayo clinic are moving away from that and using the pre-gabilans and the gabapentins as well it all paints a rather confusing picture because rls is still a poorly understood condition awareness can vary maybe depending on which country you live in or even who your doctor is here's julian again to describe what the situation is like for general practice doctors gps here in the uk unfortunately restless leg syndrome doesn't appear on the curriculum at medical school and in the postgraduate training so it's very much depending on what you've met what interests you do most gpa are aware of the condition and how to diagnose it the problem comes with treatment particularly when patients are running into difficulties because they will be looking at guidance which actually is slightly out of date unless they know about the new international guidance so what could diagnosis for rls look like in the future i think diagnosis should always consider the the entire human being all comorbidities and and all medical history if you diagnose rls for the first time and then you should consider what should i do maybe with the knee surgery it's just then it's a problem that that may start for some weeks until you your knee is fine again you are better giving no medication and just just waiting or or give some sleeping pills for two weeks and and and don't do anything not to induce the dopaminergic path here and to start with the problems of augmentation well i found this whole journey utterly fascinating and eye-opening it seems awareness and research into rls is slowly changing the landscape but not nearly fast enough considering how common this condition seems to be here's dr julian spinks with a final few words for anyone who thinks they might be suffering from rls symptoms uh i find that people will delay going and seeking help often until their restless leg syndrome is really quite severe and i think it's because often they may not have heard about it or they may have previously seen a doctor who actually misdiagnosed it what i would say is that you know if it's getting to a point where it's really interfering with your life do go and seek help i'd also recommend having a website including the rls uk website which will give you information that you can take to your doctor to perhaps convince them this is the condition but don't suffer in silence it is something that it's worthwhile seeking helpful [Music] you

Channel: BBC Global

Views: 313,459

Keywords: bbc, bbcreel, bbcnews, factual, features

Id: hnTKtp5PZGo

Length: 9min 26sec (566 seconds)

Published: Mon Apr 11 2022