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

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 🤐

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.

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

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.

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

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. :)

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.

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.

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.

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.

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.

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.

Yes, RLS is real. I first started having symptoms in my mid teens. It continued throughout my twenties and early thirties, then slowly lessened in frequency till it became a once in a while problem. I found it was worse after a very active day. It is genetic, my brother and one of my cousins also had a severe form. It was so difficult to function. I don't know how I managed to get up and go to work. It sounds minor to people, but it has a huge effect on all areas of one's life.

Iron deficiency is thought to be one of the main causes of RLS. Several studies have shown that iron supplements can help ease RLS symptoms👐

I was born with RLS it's genetic ! Mom had it some siblings have it, some of my kids have ! Been through all the testing it's different for everyone. And it sucks ! I'm 63 and I have tried everything that has been suggested, hot bath, heating pad, CBD, magnesium, prescription drugs, they work for awhile then stop. Took 3 muscle relaxers and a pain pill once still had it.

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.

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.

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.

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 👌

I've had this for 15 years, since my pregnancy. The doctor really pushed those dopaminergic drugs, but I am so glad I refused. My RLS was every night and very bad, was in my legs, arms and back, but it has gotten better. I discovered that being very well hydrated makes a big difference. I drink diet gatorade, find this is the best. I have an rx for codeine which I take occasionally and use cbd cream every night. I used to use kratom tea as well, which worked but I was also taking it for depression and eventually was not helpful anymore. RLS can get better, in my experience. Hydration! Don't lose hope.