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

'Restless legs syndrome' (RLS) is a condition of the nervous system that, in its most serious form, can be highly debilitating. It is thought to affect roughly 10 percent of people worldwide, so how come it is still relatively unknown and poorly understood?

BBC Reel's Howard Timberlake goes in search of some facts and discovers that the condition, and some of the medication used to treat it, throws up more questions than it does answers.

#bbcreel #bbc #bbcnews

[GeriBee]

Yep, this is me. I’ve had this since before my teenage years and my Mum said it was ‘growing pains’. But it never went away. I get it in my legs mostly, but quite a lot in my arms too. It worsened during each of my three pregnancies to where it was horrendous and made me cry from exhaustion. I have tried eating bananas, baths, exercise, massage, walking it off, early nights, essential oil inhalation, cannabis, muscle relaxants, sleeping without blankets to keep my legs cold, prayer…. I finally went to my Doctor in my early forties and she said “I’m sorry there’s nothing I can give you. I’m afraid it’s something you’ll have to live with”. And then gave me a pamphlet on ‘sleep hygiene’.

So, dear fellow sufferers, I will tell you what actually helps to stop the fidgets and the overwhelming need to stretch my limbs to the point of dislocation: dopamine release. Not synthetic, the natural kind… yes, an orgasm. Honestly. If I’m able to, it will work 99% of the time. There’s only been a couple of occasions where it hasn’t. After tensing your entire body for a fair few minutes, the relief (literally) is instant. For me. That’s my coping mechanism, but whatever works for you is what you stick with. I will not be replying to comments 🤐

[pawshands]

I live in the U.S., and I have suffered from RLS since I was a toddler. My RLS doesn't appear to be genetic in origins. I distinctly remember a horrifying event that traumatized me horrifically. After that, my mother told me that I began maniacally moving all my limbs and never being able to sit still. I have taken too many medications to count, and nothing has worked, until a friend of mine told me that his Dr. recommended that he sleep with his cat. I have cats, but I never allowed them to stay on the bed when I was trying to unsuccessfully sleep. Once I allowed them to stay, I noticed that my blood pressure seemed calmer, but more importantly I began to relax for a bit. After several nights of attempting this, I noticed that my cats don't allow me to move. Now, in the beginning I annoyed them with my constant twitching. I began to pet them and I never wanted to disturb them. In doing so I started to be in the present more rather than focus on this problem. It's been over 3 years now and I am relieved to say that my cats have behaved like therapy animals. So far so good.

[deborahcox]

My Grandfather felt with RLS for years. This was back in the 70's and he felt with it till the day he died in "95". He would spend nights walking the hallway just to ease the problem. The worst part of it all was being told by Dr's that it was all in his head there was nothing that they could find. He basically suffered for almost 30 years with this and on top of it he later developed Parkinson's which made walking almost impossible. This is a real condition and I myself deal with it at times I wish that someone would have believed my Granddad and helped him so that he wouldn't have suffered for so may years with it.

[creed]

I find punching my legs as hard as I can to work sometimes

[sjfanning]

I’ve had this issue on and off throughout my life. After having Covid, My restless legs got worse and started including my arms. It would begin in the evening and then I Could not sleep. Went to my doctor and was diagnosed with Long Covid and the doctor also found I was iron deficient. As soon as my iron levels were normalized, it all stopped. I am praying that this is the underlying issue and it won’t come back. It is truly miserable.

[fads]

I have suffered RLS for 23 years, I use compression socks and they help me. My neurologist tells me that he doesn't know anyone with the syndrome that wears those socks, but if they relieve me, it's better than drugs

[OzzieOzzieOzzieOyOyOy]

I’m fifty, and I’ve suffered from RLS for about thirty years. It goes on most of the day, but gets really bad when I need to sleep. You wouldn’t think the feeling of insects running up and down under your skin and on/in your muscles, or the uncontrollable urge to move your legs could possibly be that horrible, but it really is.

[Katerine]

This is just based on my own personal experience, so I don't know how common it is, but once I learned that it could be tied to iron deficiency, I realized that it happens most often for me after days when I've been seated all day, often so focused on my work that I forget to breathe properly. I've never had the issue on days when I consciously take breaks and take deep breaths throughout the day. So I have a theory: I think it might be related to a drastic change in oxygen levels (at least for me). That is, if my oxygen is low throughout the day (because I'm not breathing as well as I should) and then spikes after I go to bed (because I'm breathing deeply as I drift to sleep)... yeah, that's my theory. Just thought I'd share, in case it helps anybody else. :)

[virtualbaker]

I tried to describe this to someone, I've had it since I can remember, it only affects me if I'm tired and sitting down, wearing shoes seems to make it worse. The only way I could describe it was, imagine something tickling the inside of the bones of your arms and legs, going from the joint of your hip, creeping down to your foot, if you fight it, it comes in waves every 10 15 seconds, getting worse and worse each time. It's not painful, it's a completely unique feeling. But it's unbearable seriously.

[lynnjasen]

I’ve had this my whole life. It’s worst in auditoriums with tight spaces, and airplanes, but I am fortunate that it only involves one leg. When I was a child my solution was to just keep my lower leg moving rhythmically and this would mute my response so I could fall asleep. I’m 70 now, and the rhythmic response is so automatic that I seldom realize I am doing it. My sleep problems have other causes. However, during a period where I was very overweight and was congested due to dry winter air, it did occasionally cause me to kick so hard in my sleep that I would actually kick myself right out of bed! My constant movement seems to me to be similar to the idea some commenters had presented, regarding a really good total body tension.

[lynnwark]

I have had RLS for many years as did my father. My doctor prescribed carbadopa/levadopa as needed, which seemed to manage my symptoms well. A few months ago I started taking apple cider vinegar to help control gastric reflux. That helped immensely for the reflux condition and as a bonus my RLS symptoms have also been brought under control. Whenever I start to feel the RLS returning I find that drinking a teaspoon of cider vinegar diluted in a cup of water makes it go away. That means that I have one less prescription and a bit less pharmaceutical chemicals in my blood. Now if I could just get rid of the rest of them.

[ariesx]

As my doctor recently told me, she is not interested in symptoms I experienced a few weeks ago, I wish you good luck finding someone who is interested in your medical history, not to mention symptoms unrelated to their specific field of medical practice.

[michealayoung]

I have RLS and have had it since my late teens, I always used to think it was because I was so sporty and active, as I went into my 20s I had endometriosis and became anaemic and it got worse night by night, it felt like my legs needed to run a million miles, yet the lack of sleep was terrible still to this day, thankfully I found my doctor great who put me on gaberpentin, it certainly helps. I have sympathy for anyone who has RLS great video 👍

[coleorum]

I had it for a few weeks as a side effect of injected medication. I couldn't stand still for longer than a few seconds and had to keep walking until my legs were screaming with pain. Fortunately it went away once the cause was diagnosed and treated. Anyone suffering with it long term deserves the utmost sympathy.

[servomstk]

The comparison to a mechanism being wound up with zero release (from the patient in the vid) is a very good analogy, it’s such a bizarre sensation. I don’t have symptoms nearly as severe as she described but it can still be very disruptive. I tried Ropinirol a few years ago and within a few days I experienced the worst side effects of any medication I can recall 😬 (YMMV obviously). My unprofessional advice is maybe try out some lifestyle changes or over the counter supplements first with your doctor’s approval before going for the prescription treatments. There are some good tips among the comments here 👌

[danalasmane]

Thank you! I've had it since I can remember myself. I have also suffered from iron deficiency throughout my life, have a history of depression and anxiety, so I see similarities with many other of the people commenting here. I've never been able to sleep on my back, long car/train/airplane trips are a mostly a nightmare. Long meetings too.
During my life, I've met people who have ridiculed me when I have mentioned this syndrome - well, they don't know how lucky they are.

[catherinejames]

I’ve had this problem since I was a small child. Hate it when I get it in my arms at the same time. No one had ever been able to help or relate to what I was talking about. I do know I had always had a severe iron deficiency, used to have injections for B12 that made a difference. When I get it now, which is less often, I just go with it and move by way of flat out shaking my legs until all of a sudden I’m worn out from that and it stops. Sometimes I’ve found that if I can distract my mind enough by maybe looking at whatever on my phone, it goes.

[lazur]

I sometimes have it and sometimes don't. Not sure what cause it but I believe -among all the things doctors said in this video- it could be also stress. Also what doesn't help is too hot temperature and not enough of fresh air in a room.

[silverchords]

Howard, I appreciate you highlighting this maddening illness, RLS. But I must say it's remiss to not include it's cousin Periodic Limb Movement of Sleep (PLMS). Although closely related they differ in experience for most people in that with RLS it's an intense creep crawly sensation in the legs that can only be relieved by intentionally kicking out and it happens over and over again. With PLMS it's an involuntary punching and kicking out of all the limbs also over and over again. I know from this experience and from talking with other sufferers. My late husband had RLS and I had PLMS. We were quite the pair in bed! Ha! For both of us Requip (Ropinerole) was the only thing that helped us so we could lie down or sit down to either relax or sleep. Eventually it didn't work as well for his RLS but it kept working for my PLMS. I understand you are in the UK and I'm in the US but I believe this information is international. Again, thanks for talking about this important and often-ignored health issue.

[catsinhouse]

I have developed RLS since contracting Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndrome over thirty years ago. I did suffer from leg cramps, as did my father, since childhood. It has been rather unpredictable when it will strike each day - sometimes during the day but always at night. After many years of agony and worsening of symptoms I have finally been able to get nightly relief from Sinemet, prescribed by my neurologist, and the application of an essential oil mixture made for RLS by Nature's Inventory (on-line). Also, a soak in a hot bath with lavender epsom salts and using a heating pad on my legs at bedtime also helps. Not every single night - some nights are just awful - but it has all helped to a strong degree.