What is restless legs syndrome and why does it matter? - BBC REEL
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- čas přidán 10. 04. 2022
- '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
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 🤐
hmm interesting, I was always told I had "growing pains" as a kid too, except mine also never went away & weren't related to when I was growing, I'd just be awake all night crying in pain very regularly. Mine's come & gone a bit over the years, I realised from this video it's been completely gone since I had an iron infusion 6 months ago
@@mehere8038 Same about the growing pains, I would cry and punch and slap my legs as a child because it was so overwhelming. In the last decade however I have had to start taking gabapentin for pain management, after becoming addicted to codine following a serious spinal injury. I hadn't really thought about it but I haven't suffered with leg pain like that since, although my sleep has not noticably improved thanks to the spinal issues!
Thank you for sharing this important medical knowledge. I hope it helps some people who are suffering.
@@SevCaswell I can relate re the punching & slapping, although mine hurt too much to touch too. I used to SMOTHER them with dencorub, never felt like it helped, but it was supposed to, so I used to try to convince myself it was helping, or at least would help, I just had to wait for it to work. I think i would eventually just fall asleep from exhaustion, I don't really remember, I just remember the pain :(
I have CRPS, MS lesions & use a wheelchair now & part of the leg pain I don't get anymore because of not walking anymore, they still drive me nuts with that restless type pain though, or at least did until the iron infusion. Anyway, not sure what your issues are now & if this is helpful or not, but for the CRPS, the ONLY treatment that has ever had ANY impact on reducing the pain for me was high dose capsicum application to the CRPS location. It hurt like h*** to do, but really reduced the ongoing pain level. Apparently the heat receptors & pain receptors are the same or similar, so overloading them with the heat, stops them transmitting pain. I had to do it myself, cause it was years ago & the formal treatment hadn't been made available in my country, but it is now available through a pain management clinic where I live now, so I've been told I can get it there with anaesthetic if I need it again. It really did cut my pain significantly! Works great on any nerve related pain that's close to the surface & therefore able to be penetrated by the capsicum, so just sharing in case that helps you, cause doctors didn't even know about it when I got it, so an easy one to miss & depending on what you have, it might be helpful for you - hoping it is, cause finding something that helps is always amazing when dealing with what we are :)
@@mehere8038 unfortunatly I twisted my back, tore several ligaments and even detatched some of my spinal muscles. The damaged muscles weren't allowed/helped to heal (I was 12 years old and NO ONE listened to me) and now my spine is twisted due to the scar tissue/muscle damage and that caused my vertibrae to deform and eventually 'slip' my lumbar discs. (that wasn't picked up until I was in my late 20s!)
I can still walk, but not far and with a massive increase to my pain burden the longer I do. I am also autistic (adult diagnosis, cuz femalez don't get it dur dur) type 1 diabetic and have PCOS. Oh and depression and anciety because not being listened to did a major number on my mental health...
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.
Try iron infusion
Cat paralysis as treatment for RLS. 😃
I've noticed the same thing. The cats seem to find the most awkward place to get cozy, but you don't want to move or disturb them.
Mine too. He loves to nest in the crook behind my knees. When I do move, I do it oh-so-slow. He understands now and adjusts with me.
@@thzzzt they are true miracles working on us.
I find punching my legs as hard as I can to work sometimes
Me too
Same
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.
That's what they told me go see a head doctor
I’m convinced it’s a precursor to Parkinson’s. My whole body jerks involuntarily now, every time I’m on the verge of sleep. For two hours or so before it stops and I’m able to sleep for a few hours. So so sorry your Grandfather suffered for all those years. It’s absolutely dreadful and I’ll take my arthritis pain over RLS any day.
@@anotherplanet5828I left a comment up above in another person's comment. I agree about the parkinsons bc there's a link with low dopamine. RLS patients have low dopamine. There's a link with vitamin d3 deficiency and dopamine. I take 10 000 iu and 100mg of vitamin k2. The vitamin k2 is important to direct calcium to the bones and to make sure with such a high dose of vitamin d3 it doesn't cause calcification. I rarely get restless legs anymore. Please research for yourself. I have benefited greatly from vitamin d3and k2 supplements.
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.
yes me its my leggs and it starts the minute my body starts to relax
I feel you there. I get it when I am super tired. Usually after night shifts. Idk why but if I get it during the day if I stomp on a hard floor like concrete it seems to help.
@@OzzieOzzieOzzieOyOyOy my dad has it really bad. He is 67 and it constantly keeps him awake at night. He tried CBD but it didn't do much. He likes to get in his hot tub which I think helps a little.
If you are drinking cokes or any soft drinks stop and see if this improves.
Actually I would imagine the feeling of insects under your skin would feel horrible to anyone.
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
I will try this out. Thanks for the tip.
I wanna try this cause I am so tired of rls 😢
Could you advise what is the compression on the socks (mild or strong)? And what is your socks length? Thanks
I wear them they do help
I used compression socks after surgery and found they helped with RLS. I have had it since I was a child. There was no name for it back then..
I have often considered this as an option.
Good to know it does work for some.
I will try this to see if it helps.
I am on Levocarb now to subdue the issue.
I was diagnosed with RLS when I was about 21 and I did not have the money for the medication nor did I want to take it as it was a anti Parkinson’s drug.
But I hate it so much and it drives me nuts sometimes.
Thanks for the video
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 at 6 months since an iron infusion now & it hasn't come back, so hopefully it will be the same story for you & hopefully it will be many more years before mine attempts to come back - and yours too
Thanks I’m going to start taking iron supplements and see what happens.
@@mollydooker9636 how are you feeling now? I’ve suffered with it for years the last few years though it’s much better I keep my iron levels stable and take Vit d and magnesium
Hi!did you feel jittery all over your body?and tremors? Thanks!
@@grumpyAsianguy604 My symptoms started as jittery feelings in my legs. Suffered from that on and off my whole life. After Covid, it also moved into my arms. Would start every evening and I couldn’t sleep because to stop the restlessness, I had to move. But not really what I would consider tremors.
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 have it severely and I have noticed the same thing! It’s at least part of the equation for me
i reckon you could be on to something here,youve just described how it is for me to a t,i sometimes end up choking and dribbling a bit as i forget to breathe durng the day and this RLS at night drives me round the twist thats all i know...
Omgsh!! THIS IS IT!! I read this, took quite a lot of deep breaths & the relief is almost instant!!!!!
I notice for me it happens when I consistently exercise. So I wonder if there is something to it, as in my body taking it more oxygen etc.
I should try to drink some iron, though I had mild anemia at some point as a kid and never had this happen, only when I started going to gym.
I have had it for yrs, I have rheumatoid arthritis, and b12 deficiency, my b12 injection is overdue so am thinking this is definitely tied to it,! I get it in my arms to and the last 3 nights I have not slept!
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.
Thank you for the wonderful article
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.
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 👍
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.
What was the medication?
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.
That’s exactly how I describe it! I used to get terrible “growing pains” in my legs as a child. I wonder if there is any correlation between that and RLS
@@wendyknox7228 very well could be a connection. I imagine this is similar to how people with tourettes feel, perhaps there's a link there too. Either way, I wish there was a out right cure. It makes long car journeys very difficult. I used to get so confused when me and my friends would stay up late, and they would all just be chilling, whilst secretly I would be in a torture scenario literally.
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'm also taking ropinirole and having to keep increasing my dosage but having bad side effects Dr wants to double up but I'm taking 3 + pills already at 1mg each my mother has been taking .01 MG but she didn't have RLS untill she was 65 or so I've been suffering since I can remember Dr told my mother I had growing pains when I was about 10 yrs old then later in life told it was in my mind. Been on ropinrole for two years It was a miracle at first I thought now the more I take is making me have day Time feelings non stop I'm losing my mind and thunk about ending my life but so far sometimes I do get a break and will sleep for days I will get up eat sit down and fall back asleep even when I have something to do I've also been scared to drive as I get in a trance state and feel like I'm going to nod off to sleep now I won't drive more than 10 miles or about 30 min tops and if I get feeling like I could fall asleep setting down I don't drive at all but my mind is not always.going to catch this and I'm so worried depression and anxiety has been at all time high what's to much when is life not worth living go's through my mind all the time I'm ADHD and noticed many people are Making comments have that with RLS. My think is big phama
Has destroyed the heath care profession along with chain medical treatment centers no more Doctors that have there own practice and these chains put restrictions on doctors and what Meds to promote and what not to be prescribed and we all know pain isn't treated because a plant based pain medication is addictive. Yet cheap to make and drug manufactures don't make enough money off them so after a100 years even more than that really the plant based pain relief is off limits they will tell you people get hooked people overdose. They sure do and more so now and it's not just people hooked because they need to get high many are just wanting pain releases from chronic pain . The suffering is unbearable some choose to OD because of this so numbers keep rising but truth would be it was less a problem when pain medication was given when needed not given out like it was before the new opiates hit the markets and tell me those doctors didn't know how strong they where is bs but now look at the suffering I don't go to the hospital or my doctor when in chronic pain I have to deal with it or risk getting a pill that's going to kill me . But at some point it might be good ether way the heath system is so broken as is the climate greed has destroyed earth and days are numbered
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.
Compression socks are your friends and also look into GABBA drugs like pregabalin, gabapentin ect ❤
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.
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.
For several years I suffered with RLS every night; turns out it was caused by a medicine I was taking (Welbutrin I think). But I still have to deal with it periodically when my hip/leg muscles feel tight: mostly at night but also at times I’ve been sitting too long ( used to happen a lot during lectures when I was in college). I found that getting up and doing several stretches helps a lot.
Incidentally, I also discovered that I get really bad RLS if the dentist has to use more numbing medicine than normal, like when a procedure is taking longer than expected. I thought my legs were just restless from sitting still for so long, but after walking and stretching the sensation wouldn’t stop. Let me tell you, that was an awful drive home!
It never occurred to me that Well butrin could be causing it. I still take it because I've never had any other issues with it. But I've discovered magnesium oil. When my legs start to act up, I spray it on my legs, especially in the areas where the sensations were, and it works instantly! It really truly works, every single time. I also have upped my magnesium supplement from 400 to 800 mgs. a day along with my calcium. Since I' e been doing both, never had a problem, and I'd had it since my second pregnancy in 1972!
Mine is triggered by certain medications. Both prescription and OTC. Legs and arms(elbows).
I take Wellbutrin but I had rls prior to taking that medicince. I recently went to the dentist and I had to be numbed 3x
I have this with M.E., Fibromyalgia and I would love to exercise it off - but my main frustration of these conditions is extreme fatigue. I was given Endep and that helps, but it makes fixing my reverse sleep cycle even worse because when the alarm goes off it's like being hit by a truck and impossible to move (literally not willpower wise) I would love a normal sleep cycle but all the advice is for able bodied people who can reset with alarms. I'm not able to function without adequate sleep and get severe pain.
Do carnivore diet. No need to thank me
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.
I was prescribed requip for mine and that drug made have involuntary movements of my head, jerking left or right at night after about a week, will never touch that drug again.
Interesting. Your description of PLMS better describes what I have. I've had the problem for about 25 years. I'm OK in the day, and I go to sleep normally. But after a while sleeping, One or the other of my legs would jerk suddenly. Then it would relax, Oh great I would think. But very soon I would feal tension building in my leg muscles and it would release in a sudden jerk. And then it just keeps going. I get up and walk around for a while and it goes away.
I don't get that creepy crawly feeling or the 'intentionall' kicking.
It's better described as tension build up and sudden involuntary release by jerking and repeated every 30 seconds or so..
I will mention this to my doctor and ask about Ropinerole. Thanks. I've never heard of PLMS before. I thought I had RLS.
Try an aspirin if you are allowed them. No kidding it really works for me
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.
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.
It typically occurs at the nap hour, and if you are in an environment whereby the room conserves heat too well, then the best approach is to do a before nap time workout routine of your choice for an hour and also remember to keep the dry air out during the summer the best way you know how or winter time using the thermo control with the "fan" control setting on "auto" fan setting simultaneously and not "on". Dry fan air will dissipate at auto setting, and it's good for the lungs when you do your workout out in your room at night before bed. That's my conclusion and cure after 38+ years, too. It seems that at this age, it is the gold standard age experience I've noticed. Human evolution wasn't meant for energy saving high-tech rooms, which trap dry air in rather to the contrary outdoor experience. Who even gets cured off of restless leg syndrome on a couch rather than outdoors doing stuff and then napping in the forest somewhere. I am serious about this. It's a cure on my behalf in every season of the year and counting. My time for a workout is at the 12 mark to 1am. It is cold outside to open windows and dangerous too. unpredictable too if you live with your loved ones.
@@aahsigh8706 I have to admit, since I started working out (I'm doing it right after my job) never encountered the problem (2 months already). I'm doing some HIITs but probably every type of workout is good.
Also I think I had a lot of that leg problem during covid pandemy when I was working from home.
@lazur2012 Sorry, I was editing some more, and i was multi-tasking. You probably read them via youtube notifications on your end on the internet. So, the experts are now beginning to get better at explaining this RLS off late. Text book medical diagnosis varies from person to person, it seems. Some of us use placebo or other leads. The RLS will start up like that, like it never improved. RLS can happen again, like you said , but the common culprit or factor remains the same. Some building's interior temperature climate control settings can relieve the constant " fresh" air issue. Of course, there are person's with RLS with pre-existing medical history already in the mix and have to continue talking to their doctors about how to incorporate their workout into their routine. I appreciate your patience getting multiple edited posts on your notification bar. Keep healthy and, importantly, breathe healthy.
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.
Its so bad. So your RLS lessened overt the time and get better ?
@@danielprose5878 Yes, in my case it has lessoned but there are periods of time that the symptoms are worse - but not as severe as in the past. A note for men, it appears that men with RLS may also be sleepwalkers. Both my brother and cousin had occasions of sleepwalking. Also their symptoms lessened, but again like me RLS still will occur.
@@dina113east thx for that .
Me 27 looking at this comment scared af 🥲
Yes it has. I feel it. Cant do nothing .
So u are Sure u have ideophatic rls ? Maybe its better now cause of ur iron levels and IT only depends onnat ?
I've suffered from RLS for about 13 years. For me, it occurs only in my legs and only at night when I'm in bed. The only relief I have is to get up and walk around. The minute my feet touch the floor I feel better already. I have found that not having coffee, tea, chocolate, wine, balsamic vinegar, or allegery medicine after 1pm greatly reduced my symptoms. Once I limited those items I started to have some restful nights. I'm by no means cured from RLS, but I do suffer less now. Cutting out wine, vinegar, and allergy medicine seem to be the most help.
I have RLS and I consume lots of caffeine. It makes sense that it started after years of consuming it that much.
Try an aspirin if you are allowed aspirin. No kidding it works for me
I had RLS from the age of 14, and I still have it today. The weird thing is that when I moved to Thailand at the age of 29, it went away within a couple of weeks. It didn’t come back until I moved back to the US. My doctor suggested that it might have been the iron in the fish sauce that is in nearly all the food there.
I personally think there may be a gut microbiome connection. I personally developed RLS after a course of antibiotics and some foods set it off beyond control for days. Some people report certain environments have profound effects on their GI issues.
@@jmass4207 Interesting! Once the antibiotics clear out of the body, the foods we eat change our microbiome every single day. This field of research is my daughter's specialty. Not her best video, but at least you can hear it. czcams.com/video/960zTLUD7VU/video.html
@@jmass4207 gut issues lead to a lot of illness in the body
@@TASIAawful1 9:26 😊
I've had this for years and just realised that I have the same problem as toe-walkers. I am under 5' tall and too big chairs make my feet point downwards. Toe pointing while sleeping on back or side makes it worse. Over the years it shortens the ligament and calf muscle. Caused morning high blood pressure-- night 110, morning 150. Hard to change 70 yo habits, but worth it.
Holy crap, I have really tight calves and hamstrings. Did you just solve my multi-year battle with RLS??
@@DeliberateConfusion Gracias!
I do heel raises (hold onto bed for balance and raise heels 20-40 times. I also flex and point my feet and rotate feet in circles both directions. These stretches help me. I think you are onto something when you say over the years that RLS shortens the ligament and calf muscles.
I also do stretches for my hip flexors.
Just today, a lady at my church Book Club was telling me about a place she goes (Stretch Lab) . I'm going to try this place.
@@kellysweeney5429 9:26 9
When you say your "legs and arms seem to be getting minds of their own" that really grabbed me. It describes my situation exactly. I've had restless legs for some time and it seems to come and go. But in the past few years one of my arms develops a feeling of wanting to fly off by itself, as though it's full of some uncontrollable energy. All of these things happen only at night while trying to sleep. I've not sought medical help, but I have found that if I command myself to relax it can help. The restless arm can be controlled by holding it down on the bed until the feeling stops. Thanks for this video...it's helpful to know that others understand these troubling sensations. I fear that as i grow older they will become worse
I’ve slept with my arms tucked under my chest forever, but it still happens. Sometimes my arm just shoots out, and I’m not even sure I intended to do it. It’s a maddening condition.
@@alijane6675 I basically sleep that way too. And never with arms extended over the head, as some do. My arm has also has a tendency to dislocate, so I learned to sleep that way many years ago. Yes it's a maddening thing to feel these things.
i actually relate with your words so badly how is your RLS now?
i am not able to explain my feelings but, it not pain it is something which will not let you rest with your mind and body too........i think RLS symptoms are strongly connected with your thought process how you think or you are overthinking the moment you get busy somewhere the symptoms will stop and when you are sitting normally you will get it basically your mind adapts this behaviour of your body that when ever you sit aur lie down you will get these symptoms and then you brain just naturally release these sensation......When it happens you can tell your mind it is happening because you are letting you mind to think in this way actually nothing is wrong with your legs its all in your mind this way you can help yourself i am just trying to help myself in every possible way it might help you also may be...... some vitamin deficiency like Vitamin B12 vitamin D and iron can also trigger this.....May evryone heal from This disgusting RLS
Yes I tell people all the time that my arms and legs are on a different clock than the rest of my body. Mind of their own, I feel like my muscles are trying to crawl out of my skin
Absolutely spot on. Minds not sore but when it starts in my legs i just cant get comfortable really Bloody annoying. And the feeling of electricity running through my legs.
I've had RLS since I was a young child but only in my left shoulder and upper arm. It comes and goes -- usually with long periods of latency followed by several weeks of it. Usually happens at night, when I'm stressed, or when I'm in a situation where I know i need to be still (going to the dentist is a nightmare!) The only thing that relieves is it is raising my arm up in the air. Interestingly, as I've gotten older it seems to have gotten slightly better.
One only needs to read through a sampling of the comments here to get an idea of just how incredibly varied each individual's experiences are when it comes to RLS. The complexity of this disease has to be the primary reason why we still only have treatments available to help manage RLS (with wildly varying degrees of success), as opposed to an actual cure to eliminate it. Well done videos such as this one help increase awareness, which hopefully leads to finding a cure sooner rather than later.
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.
Thank God someone else gets it. Started after my first pregnancy , I get it in my legs and what feels like it’s into my spine it’s a truly horrible thing. It’s feels like electric ants crawling inside my veins. I’m interested to read all these comments for suggestions.
Kratom is a godsend. Doesn’t take much for me and has not lost effectiveness for years.
If you truly have RLS it will never go away !
@@mea3665 yup. But it can be worse or better at different times, and for me it is now generally better than it was a few years ago. It's rarely in my arms and back now and it doesn't start so early in the evening.
@@jmass4207 The kratom never stopped working for RLS, it was just that it was not working for my depression and anxiety anymore, so I decided to abandon it and go a different route.
I have gone about 4 days without RLS which is extremely eye opening since I was right in the middle of the worst case. It went away 2 days after I stopped taking my calcium citrate chewables. My first guess, is the calcium was causing my RLS. Although I've had this when I wasn't taking Calcium. But my RLS started when I was pregnant with my twins, and I believe my pregnancy could have released calcium into my system lasting for years. I looked up some things on calcium supplements and found that most the time they never get absorbed by the body, and it's like ingesting rocks, which accumulates and causes stiff joints and cramped legs. My second guess is that it went away from one of the supplements I added to my diet. However these were added weeks before the RLS went away. So, if it's from one of these new supplements then it took a while for it to start working. Which is possible I guess. The new supplements are: Ox Bile (to help absorb fats), increased my potassium, Vit. C, Iron, Selenium, B-1, B-5, and L- Tryptophan. So, for now it's a mystery. Unless I want to test things to figure it out. I will probably do that later, but for now I just want to enjoy not having it!!! Oh, one more thing, I lost 5 pounds. I'm not sure, but I think it's possible that once I get over a certain weight I get RLS. Also, pinching between my big toe and second toe made my RLS go away when I would get it in the middle of the night. The first three times in one night, it worked. The second night it worked, The third night, it did NOT work, The fourth night I never needed to try it because this is when my RLS started to go away. And like I said it's been 4 days now. So, I can add this to the mystery list as well.
I’ve suffered from restless leg syndrome since I was a teenager. There was no treatment back then. I’m so glad there is a treatment now! I was missed diagnosed for years!
What’s the treatment I feel like I’m going crazy
I have had RLS since I was a child. It can be extremely unbearable and painful sometimes. Some nights, I cannot sleep at all. The mental toll is crazy. Stress generally makes RLS worse :/
I've had mild events of rls, my mom had it so i wasn't too surprised. For all this info is worth, a neurologist told me, for an unrelated reason {i hadn't discussed this mild symptome with her}, to take a b vitamin complex, it is a very common one with b1, b6 and b12. I realised after a while that i virtually no longer have the syndrome.It could help and doesn't hurt. It helped also a lot of beginning little symptomes, that i attributed to age...i know my case was very mild, but there you are. Oh yes, and absolutely taking off my socks
I have an issue brought on by nerve damage in my spine. My left leg started twitching usually after going to bed. It would twitch about 3 times a minute making nearly impossible to sleep. Another problem I have is my feet react to touch that is cold and wet. One thing I found that helped was having a heating pad at the foot of my bed to warm up my feet. It has got better over the last couple of years but still can keep me awake for hours at a time. My sympathy goes out to those that suffer from the condition and have it far worse than me.
I agree, I have the same problem, however mine seems to get bad when my legs start to warm up. I have had to start taking ibuprofen and Tylenol before bed. If I fall asleep fast enough I’m good.
I developed RLS in my 50s and also had degenerative disc disease that was worsening because of the hard labor I was involved in. Diazapam helped me sleep through it and then as its effectiveness waned. Clonazapam worked to help me sleep through the twitching as did the Diazapam for a while. The Clonazapam still works after decades. A neurologist recently denied that there was any relationship between nerve impingemnet or damage in my back and RLS. I disagree. It helps me to get out of bed, walk around for a couple of minutes and go back to bed. On bad nights after I've done more heavy lifting or otherwise have muscle spasms in my back, the RLS isn't as easy to stop. A second dose of 1mg of Clonazapam and a couple of Ibuprophen tablets usually relieves both my back spasms and the RLS. I do far less physical work now and the RLS seldom bothers me but I can't get off the Clonazapam or I won't sleep and I will start getting RLS problems. I think my problem is much different from those who have had this from a young age and I don't agree with the neurologist that it isn't a problem caused by my back ailments.
Mine developed after a badly placed epidural so I guess that’s a spine issue. Sucks so bad.
I know you posted this a year ago, but I thought I’d tell you what works for me. Ask your doctor about this medication-Carbidopa/Levodopa. I had this RLS for a few years-now I’m finally getting very peaceful sleep. It’s just such a difference.
I found out that my allergy tablets (cetirizine) were playing a large role in worsening it (or causing it). Since I went off them, it's pretty much gone away entirely. It took me a very long time to realise they were the reason, and apparently they're not the only medication that can cause it.
I got RLS from antihistamines too :/ I believe there are newer variants that doesn't give it though. The ones I got was for sleeping aid.
I can no longer take Benadryl as it really aggravates my rls. Bur I can take other antihistamines which is good because I also have bad allergies.
Yup, antihistamines were such a trigger!
@@Svafne 9:26
Are there any tests for rls so that I can be confirm about I have it or not?
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.
my father and I have both found that kratom works for us.
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👐
Magnesium also helped my mother immensely
One thing that's helped mine in more recent years (much milder and less frequent now than it used to be) is having a glass of Indian tonic water soda that contains quinine as soon as the bubbling-crawling feeling up and down my back or between my shoulder blades gets strong enough that I know it's going to get into my limbs and escalate. Exercise and showers sometimes work, but wil lthen leave me awake depending on when it happens, and preventatively isn't always possible because I get migraines and will be too ill, prolonged lying down can be one cause of the restlessness for me. Taking the vitamins and minerals seems to have kept it fairly infrequent compared to how it used to be for me.
Chalk, not iron.
yeh, iron infusion has 100% fixed mine overnight (I think I honestly didn't really notice it was gone until this video reminded me of what I used to have before the infusion, so I'm not 100% sure if it was gone the night after the infusion or what. I had a bad reaction to the infusion, so that got my attention & stopped me noticing my leg changes at the time)
@@mehere8038 that's not a acceptable outcome as there is a conscious level of innocence. Say, do you interpret nitrogen as is? For blood to be red, there need be nitrogen.
Just going to through my story onto the pile.
I had RLS real bad as a teen, along with constant sleep paralysis and exploding head syndrome. I'm pretty sure mine in particular was caused by anxiety, because once I got my cat I felt so much more at ease. Now I haven't had any of those things occur in the past 8 years since I've had her. She quite literally has been a lifesaver, because all of those were just so unbearable and often brought me to tears.
Question, is it also a symptom of rls if you are somehow unable to sit still for longer periods of time or could that be something else?
Yes, I've had this for a long time, I think it began in my teens and it's gotten worse in older age. I have found yoga before bed, basic poses focusing on lower body flexibility, for about 15 minutes takes care of it most nights. Not every night, but most nights. I kid you not!
Just deal with it after knee surgery?! Words spoken by someone who I suspect has never experienced this. RLS has been a mainstay in my life since I was a little, little kid. There is no way to “just deal with it” - it will literally drive you mad. I’m on exactly 2 medications, pramipexole and gabapentin, they’ve been saving my very sanity for about 15 years. Thank God for these meds!
You should look into Lyrica. I find it easier on the system and works a better. There's finally a generic to Lyrica to be more affordable OOP if name brand is too costly or not approved.
I suffer from RLS - I think not as bad as many. It hits me only once in a while, and is not absolutely terrible. However, it is really uncomfortable, and as the one person said, almost an unbearable feeling of being wound up with a need to release energy. For me, it's like every nerve and muscle in my lower legs are trying to work and fire in opposition to each other all at once - feels like tiny bugs crawling around in the muscles. My only remedy is to suffer through it, or get up and walk around - for hours. (edit: mine only affects my legs - mostly my calf muscles - and has come about during mid-life and onward)
My sister and I had it terribly as kids but we did NOT drink milk (except in cereal) and cheese was seldom in our home due to the cost, so we were likely low on calcium, vit D, and magnesium. Once we both increased our intake of those - it totally went away and the only time I've had it back is when I did not have the money for adequate intake of those vitamins.
Very informative. I've had it since my late teens/early twenties. Over the years I've found things that either trigger it or make it worse: NSAIDS like Advil PM or Tylenol PM so I've stopped taking those completely (for years now), too many nitrates in my diet in cured meats etc so I've largely eliminated them from my diet entirely, or large meals at dinner time. I've had success with Magnesium Citrate supplements and take them every night before bed - either capsules or a powder under the brand name "Calm" mixed with warm water. They either stop it from happening or lessen the severity/duration. CBD and CBD-N either topically or orally seem to work as well.
I have had RLS for more than 20 years. I have found magnesium bisglycinate to help a lot. It works on the nervous system and I can sleep.
Yes that helped me too when I had it. I quit eating meat and it went away.
Same for me. I take a magnesium pill every evening and I quit eating meat. Its gone.
@@staalwijk and Koley W I did not there was a relationship with eating meat. I am going to research. Thanks!
@@ArtClaux It just happened that I stopped eating meat, I didn't say it was the solution.
Magnesium does help.
I got a magnesium bar of soap and put it between my legs and I went to sleep. I really does work. I think your body absorbs the magnesium.
I’ve had it my whole life. When I was a kid I used to pace around my bed room all night for miles till 3-4am because it was just more comfortable then laying in bed and trying to sleep. It doesn’t hurt me but drives me crazy with discomfort. It’s like a torture device right when you are on the verge of finally falling asleep you suddenly feel extremely uncomfortable. I’ve never known what it was until just a few days ago. I’m 36 years old now. I’ve always told my wife I feel claustrophobic in my skin when I’m trying to fall asleep. It’s not just my legs, it’s all over. This also makes sense with my drinking habits as I don’t drink often but when I do I tend to be more of a binge drinker and I know people who do this instead of more often regular drinking do so because of the neurotransmitters in the brain block dopamine so they drink more to get the feeling. This rls is an issue directly related to that.
I just put all this together a few days ago and it all makes sense in my mind.
I get restless feet from medication so not sure it’s the same thing, feels like I have jumping beans in them. I find putting compression bandages on my feet helps, doesn’t go away but stops them jumping around quite so much so that I can sleep.
I have had many bouts of moderate RLS over the years, however I am now on buprenorphine PRN (I take it most days in various doses) & Gabapentin for pain management but never knew either were treatments for RLS - at least now I know why the episodes are practically non-existent these days :) So glad that these are successfully helping people & hope that they become better known as treatments given that RLS is a cruel condition and augmentation sounds like RLS on steroids & needs to be avoided at all costs.
For me the cause was diabetes, before it was officially diagnosed I had restless leg syndrome. After cutting back on sugar and taking diabetes medicine it went away.
My mom has it, and I do, too. Medication *sometimes* helps, but when it doesn't, it's awful. Sometimes it's not just my legs. Some nights, my arms are all kinds of jerky and crazy as well.
Having texture under my feet/legs is a major help at night. I keep a sheepskin rug across the foot of the bed. A smooth fitted sheet just makes it worse because there's no feedback from it when you move your legs over it. Plus, my cat won't let us have it any other way. He has to climb between us in the morning to suckle on the sheepskin. It's a major help if you have a partner with RLS and can't sleep due to them constantly moving.
I’ve suffered from RLS for years now. So many sleepless and frustrating nights 😞 I googled a lot and found some very sketchy aids to relieve it a little. What have actually helped me though is drinking 1-2 glasses of Tonic that contains Quinine(very important!) 1-2hrs prior to sleep each night. It might not work for all of you. But it made a huge difference for me. I urge you all to give it a try and hopefully you can get some rest 🙏🏼
Try taking magnesium before bed.
My father did the same thing and the tonic water with quinine helped him tremendously
@@Budgeman83030 SO happy to hear that and really hope more people with RLS tries it out. Its a cheap and inoffensive possible solution and it beats being on benzos or opioids. Even if you drink it every day for the rest of your life
Iron supplements help me
Try an aspirin if you are allowed to take them. Sure works for me, l am RLS free after suffering for many many years
For me, I toss and turn with restless legs for hours. During this time, I go through a cycle. I am able to fall asleep, but the absolute millisecond I fall asleep, my legs jerk, and wake me up instantly. Then the cycle repeats. Last night was bad, I think I got maybe 1 and a half hours of the worst, horrible, broken, sleep. I hope tonight is better.
Try an aspirin if u are allowed to take them. Miracle for me
Have you checked your Ferritin levels?
Same for me! It’s miserable!
Kayla Stewart here, my RLS developed during my first pregnancy. 2 more pregnancies and 13 years later and the RLS has NEVER went away. I got hopeful reading it would cease after my pregnancy, but it never did. My youngest is 4 and I still suffer from it EVERY NIGHT.
I would like to add that when I was little, I would wake up at night screaming and crying that my legs hurt, and my mom would sit and rub them all night. She said it was growing pains. Maybe it wasn't? But it went away when I got older and then the RLS happened right before I was 21.
"Patient Expert"... thanks! 😍👍
I wasn't aware of that term before
Thankfully, mine is a really mild case, probably a comorbidity.
Yet I always appreciate this type of good and valuable info.
🌹❤️🌹
hmm seeing this video pop up in my recommended, reminds me I used to suffer from this & made me realise I haven't had it at all for about 6 months now - since I had an iron infusion! Guess I know what caused mine lol so I guess my advice to anyone with it would be to get your iron levels checked! Other than that, I found extreme stretching used to help me a little, not much, but better than any other options I had. I used to sit up in bed & lean over my legs to stretch them & just sit there like that for about half an hour straight & then lie down & tuck my foot under my butt & stretch the front of my leg for anotehr half hour or so & after that I would normally be able to get to sleep. I'd end up literally with my head on the matress between my legs on the sitting forward though & then having to find ways of stretching further, cause that wasn't enough to actually stretch the muscles, cause they were so stretched from the amount of stretching I had to do to get any relief!
It's a bit of a nightmare condition really, it's made worse by being overtired, but it stops you sleeping, therefore makes you overtired, so vicious circle!!!!
Squats help. Any leg exercises do actually.
Not really. I notice my rls is worse whenever I've worked my legs a lot during the day. It's especially bad when I've had a long work day on my feet all day and my legs and feet are sore. Then at night, just as I'm falling asleep, instead of being able to rest, I get the restless discomfort in my legs where I have to kick and shake them, almost uncontrollably, and I punch them and rub them trying to try to get rid of the sensation.
@@jelatinosa yeah, used to do the punching bit myself. But I was talking weight training, standing and sitting without moving is just going to increase the RLS symptoms. Also, some food items, mostly the sugary stuff seem to increase it, most noticeably for me is fizzy drinks (but can't do without those so 😬).
Any exercise that targets the quads and hamstrings is a great help, from personal experience. Squats and lunges, lying side leg raises and in yoga padmasana (lotus pose) have all been very effective for me. My RLS isn't too severe though from what I get from the video so might be different for others. Do try it out 🙂 hope it helps
@@SabeerAbdulla well, I have to run around a lot, squat down, pull tankloads of heavy merch and carry heavy boxes and totes at work. It's not just standing stagnant, and I only get one small break where I can actually sit for lunch. Like I said, the more exhausted my legs, the more restless they seem at night.
@@jelatinosa hmm, I guess it isn't a universal set of things then. 🙂 Just sharing my experiences in case it helps anyone. There are a quite a few videos on how to combat sciatica, you might want to try those out too. Mostly stretches and a few weighted exercises. Hope it helps 🙂
I can’t tell if you’re saying Gabapentin is good or bad? I was prescribed it for RLS a while back and it sure helped me sleep. My current doctor insisted I switch to Ropinerole, which doesn’t seem to help me sleep at all.
My mother developed RLS after my birth, 1980's and it got worse after. I started doing my own research on it from the host of medications she took to relieve her symptoms because it led to other conditions as well, psycho somatic disorders, depression, etc. Some tranquilisers never worked but about 12 years ago she was prescribed Pramipexole Dihydrochoride, which reduced her symptoms to some extent, but did not completely eliminate it. She is still on medications while I wait for some magic potion to have her RLS cured. Thank you for the video.
I massaged my legs then do squats , but it still wakes me in the night , it can start at anytime, makes you feel crazy , I feel like crying Two of my grandchildren suffer with it they are young women . Doctors in England are not interested. I don’t take medication, when you consider having to take medication all your life I would not do it .
I have been having it so bad like thrashing and not sleeping for days. I had blood work and have very low iron i also have hypertroidism/Graves Desease as well. I know what the woman is talking about the way she explained it was perfect. I often try to find things to compare it too and its impossible. I also take Diaz for it and my anxiety and it has helped but I understand how benzos work and don't want a dependency.
This is really interesting and I dont know if what I get is a mild version . For several years I have had problems with my legs twitching mainly in the evenings and not every evening , it feels like the nerves in the legs are making the legs twitch and feel uncomfortable and sometimes it gets to the point where I just go to bed although once asleep I do not have a problem . Working from home I work into the late evening at my desk and I often wondered if it is caused by the sitting down although I do tend to get out and about dueing the mornings .
I get rls occasionally, usually when I’m under a lot of stress, and found that cannabis is a reliable remedy.
makes sense. it's a dopamine issue and I'm sure you can work out why cannabis is called dope? yep. it raises dopamine
I disagree with the Iron deficiency cause. I had RLS for many years and also suffer from Haemochromatosis, therefore excess iron. I tried magnesium and it works a treat.
No doubt this is the cause for some but not for others. The complexity of this disease is likely the primary reason why we still only have treatments available to help manage RLS (with wildly varying degrees of success), as opposed to an actual cure to eliminate RLS.
It appears there are multiple causes for RLS, Iron def being just one
I've never thought to ask a doctor about this, my neighbours always complain that I'm in and out late at night because I need to move and run/walk or work out, like you need to tense and relax as soon as I get ready and into bed. My gf hates it because it's too fidgety, I didn't know this was a medical condition
Had RLS since childhood. Finally resorted to a sleeping med and still on it 30 years later.
I had this briefly as a teenager just with my legs. I only felt it at night. In my experience stress and coffee made it worse. It didn’t last long after I learned to relax and de-stress. It flares up now and again when I feel restless. I don’t wish it on anyone and sending strength to those who suffer. 🙏
This is 100% genetically passed through my family…… my mom, me and both of my sisters…… sadly my son, daughter and grandson (daughters son) also suffer from RLS……..
What is "genetical" is poor healthy habbits and gut microbiome. Don't belive this genetics bs. Check Dr. Gundry.
Maybe is not genetic. Maybe is because you all as a family eat the same type of foods, all deficient in iron. It‘s the same with diabetics! ITS NOT GENETIC and IT IS REVERSIBLE. It‘s all about the FOOOOOOODDDDDD
i work in a carehome. a resident has 3 blocks of oldfashioned sunlight soap blocks underneath her matras cover at her feet and swears by it. talking to my colleages about it and some confirmed that it is a remedy., heard it from other people too. maybe worth trying.? i am not a sufferer myself though..
placebos are proven to help around 20% of people who take them
It's an Old Wive's Tale. RLS runs in my spouse's family, and this soap does nothing. They may fall asleep sooner only because they're reassured by the presence of the soap. In other words... it's all in their heads.
I think I've got this RLS but its not constantly affecting me. I get a funny uncomfortable sensation in one of my legs or arms at night. I'd be kicking and stuff to get rid of it and sometimes end up getting up and moving about.
Personally I find regular exercise (walking, running) reduces incidence of RLS. If I do get symptoms I take calcium +magnesium immediately, which generally stops it. I have had it on and off all my life, but it was worse when I was a teenager, then later when I was pregnant.
I've always found the opposite. Stretching helps me a lot, but if I do a lot of exercise or walking, I can be guaranteed I'm going to have a bad night from it. I have flat feet, not sure if that's a factor, orthotics don't change the above though
@@mehere8038 same for me and i don't have flat feet, rather I've high arches. So the type of feet isn't the problem.
@@conscious_choice interesting, could actually indicate feet can be a problem. Both flat feet & overly high arches cause pressure to be put in the wrong spots on leg muscles, pushing them sideways just in the opposite directions), so I wonder if gait is a big factor in it? Would be interesting to hear more people's feet situation
I'm actually in a wheelchair now for other reasons, still with feeling in my legs though, but I don't get that extreme pain I used to get, haven't since I stopped walking. Restless part of it is identical, but it's not accompanied by that excruciating pain. That's one of the main reasons that I first started thinking it could relate to feet. & btw at one stage I was trying to address my issues & as part of that, swimming a lot of butterfly (well sort of, my legs didn't work to do it, but abdominal muscles did & legs would follow them) & with fins/flippers on my feet (well one of them anyway), so as to increase the resistance & through that I was able to build significant muscles in my calf, where most of my pain used to be, probably even bigger than the muscles were when walking & even on days when I did that level of exercise to create that, I never got that RLS pain I used to get when walking. Can't remember what the RLS was like when I did that, I think if it made it worse I would have remembered though. I remember I'd have sore muscles, but just regular exercise sore, not RSL spasmy, throbbing, horrible sore & big thing for me was I used to bandage my legs on really bad nights to try to get some relief & a few years after being in a wheelchair, I was doing a tidy up/reorganise of draws around my bed & found my bandages & immediate response was "they have to stay", but then I couldn't think why, took me ages to remember they were essential to be able to grab & apply when woken during the night in agony & to then realise that I had not used them since being in a wheelchair & that was when I made the connection that not walking had stopped that part of the condition. Again not the RLS as a whole, but certainly the pain from exercise/walking part
@@mehere8038 thanks, interesting. Too much walking makes it a lot worse for me too. And it's a fine line. In my case there's something genetic to it. My father (flat feet) and brother (normal feet) also have RLS. My brother was diagnosed with Parkinson later. And my late father had similar signs. Maybe genetic and environmental factors both as they say in the video. Maybe dopamine issue. My brother's RLS is better now with his P. medicine (levo dopa)
Btw years ago i took NADH (original Birkmayer) which boosts dopamine, and had no longer RLS. Unfortunately it got too expensive, i stopped taking it. And now RLS is back every now and then but horrible if it is. For some of us it has to do with dopamine imo.
@@conscious_choice That's really interesting. I wonder if into the future there will be proper research done into this & explanations & solutions found. I think it's one of those conditions that traditionally has just been blamed on the patient, but I think those conditions are starting to overall get more recognition, so maybe we will see some proper research & answers? lets hope! Your family would certainly be interesting to involve in any studies on this sort of stuff I think from what you're saying, may even lead into more knowledge on parkinsons in the process, cause that's another one that's poorly understood too! I read during covid that apparently parkinsons case numbers exploded after Spanish flu, so they think there was some kind of connection, at least for some people. Lots to be learnt about conditions like that too with proper research!
I’ve suffered from RLS since I was diagnosed with an Autoimmune Disease 14yrs ago! I felt like I was running a marathon every night, after years of suffering & trying anything that people recommended & still nothing worked, then my friend told me about ‘Weight Blankets’ so I bought one & gave it a go! Wow it’s made into the person I use to be, I’m getting better nights sleep so I have more energy the next day! My health condition is a lot better, I definitely recommend trying one.. Hope you all get some relief from it soon!
I've had secondary RLS off and on for 8 years now. When I was first diagnosed with it, I also had low iron stores. Iron supplements helped with the symptoms, but they never completely went away. They started to worsen again in 2017, and I soon learned that my iron levels, blood cell counts, and HGB levels were all low. I had already been taking iron supplements that time, so I started seeing a hematologist who ordered a bone marrow biopsy and iron infusions. The RLS got better again, but I still had symptoms of it, and I would sometimes feel like I was tensed up like a spring that just needed to move.
In 2021, I had finally had another sleep study done after fighting to get it scheduled throughout 2020. My friends thought I had sleep apnea, but I also had some other strange symptoms, like hallucinations when I wake up and fall asleep, tiredness throughout the day, severe insomnia at night, and RLS. To my surprise, I actually have narcolepsy w/ cataplexy, and RLS can be caused by narcolepsy in some cases. It may also be a way that I try to keep myself awake during the day.
how about sunlight or vit D?
you loook creepy
My symptom is on my right calf, that it keeps my right feet quivering, tensing and kicking uncontrollably but when I apply pressure on the middle part of the calf, it subsides for a while then acts up again. Is it the same as the restless leg syndrome?
Any connections between this and monster calf, toes, ankle, foot muscle cramps? Hormone and chemical imbalances are a cause. Magnesium deficiency, drink pickle brine, muscle relaxers... ? The pain is excruciating and wind up walking cold floors.
At age 15, I began Hatha Yoga, in 1972, and I suggest anyone SUFFERING from these conditions practice Hatha Yoga.
I don’t know if it is RLS or not but, when I lay down to sleep my hips, femurs, tibias and fibias or the muscles attached to them ache deeply. The only relief I’ve found so far is the application of deep prolonged pressure.
Is that similar to RLS pain or should I investigate elsewhere?
When I lie down, not lay. Hens lay. People lie. Today I lie down. Yesterday I lay down ( past tense). Usually, I lay the book on the table, but yesterday I laid it on the shelf.
Seriously ! Did you have to be so condescending towards that person's post ! Completely disgraceful thing to do to them !
@@Kiss_My_Art thanks for your post! I don’t mind correction but I dislike people who play “big me, little you” as a means of correcting me!
I have had this since I was a child. No doctor took me serious until I hyper extended my knee and ended up in a brace and physical therapy for six months. I have broken toes in fingers in the night. I was checked for anemia when I had surgery and found out my hemoglobin was 9.09 with a less then 10% saturation. I had to have an iron infusion. Unfortunately I am allergic to the infusion. That was a new one for everyone at the oncologist office. They have me on Ropinirole and it has worked miracles. I now worry about it adapting into something new. It took me over twenty years for them to hear me and a broken knee. I could totally see where this coming back worse would make you want to die. I just wanted to sleep
Nice vid, but you should explain the symptoms more in detail, imo...
I have RLS it's very hard to describe, my legs feel the need to move and a feeling inside like she said creepy, crawly feeling, I have the urge to stretch my legs, mine isn't painful just having to constantly move , keeps me up at night which means no sleep until you are so exhausted.
@@LIK64 That's a very good description of RLS. I only had it once after giving birth to my first child. The midwife had to tell me what it was. I was SO freaked out! It never happened again. Whew!
I experienced in my legs at night. Just wanted to keep kicking, which would briefly reset the feeling. For me, I realized there was some link to eating protein a few hours before bed, especially chicken. Sounds strange but paying attention to this has been like a light switch for knowing when I might have long night ahead of me.
When I was pregnant I developed a severe RLS. I couldn´t sleep for hours because my legs had to move. My gynecologist prescribed a high dose of iron which really helped. After giving birth RLS stayed for a couple months and then lost intensity. I am now taking magnesium because I can still feel it coming in the evenings. I´m ok with it for now.
I developed RLS after foot surgery. At first, it was the nerves reattaching in the foot that would cause my leg to build pressure and jump. But months later, it was just the pressure and jump. After a few years, it started affecting me every night and was very disruptive. I found putting pressure on the build up area, my thigh, helped. So I would wrap the belt from a robe around my thigh and all was good. But, it's not a great idea to cut off circulation for so long every night. I told my physician and she said to try Quinine. It's OTC, here. It worked the first night I took it and every time I use it. I don't know if any other RLS sufferers have this, but you can tell when it's going to be a bad night before you go to bed. So, when I know it's gonna be bad, I take a Quinine pill and all is well.
It’s definitely a genetic problem because I remember from a very early age noticing that my father had it. (in the evenings whenever he might fall asleep in a chair or the couch, his feet and legs wouldn’t stop moving). Anyway, I began to experience symptoms in my late twenties (I’m 59 now). I assumed that I was on the same trajectory and basically resigned myself to just enduring it. Whilst growing up in the USA I had seen a few different family doctors over the years, and been told by all of them that there wasn’t really anything that you could do about it. However about 16 years ago I moved to Australia and finally found a G.P. (general practitioner) who not only acknowledged that I had RLS, but who suggested high doses of magnesium (1000 mg) at bedtime. It has been amazing… and I don’t know if this would work as well for everyone else… (I’m getting the feeling that compared with other sufferers, my case is probably more on the milder side)…. but that being said, it’s definitely worth a try if you’re struggling. It would probably be a good idea to check with your doctor and/or pharmacist before taking anything that might potentially interact with any current medications you’re taking. I was incredulous at first to think a vitamin could help, but I know the magnesium is actually working (and not simply a placebo affect) because every time I run out of magnesium, and forget to get a new bottle.. within a few days of running out, my symptoms always come back. Good luck to everyone out there, and I hope you find relief 🙂
Wow! This sounds like my husband and his family. His mother had it and ALL of his siblings have it pretty bad. Ropinorole doesn’t seem to help much anymore. Sometimes I’ll find him standing in corners asleep. I kicked him out of the bedroom cause I can only take it until about 1 am. It’s horrible. I’ve been kicked, hit in the head, he flips and flops in the bed and legs are constantly going. It’s crazy. I’ve given him magnesium but he will only take 200 mg. I’m going to urge him to send a message to the dr and take more. I’m glad this has worked for you it. It’s very difficult to live with RLS and have no sleep. Oh and the being hit in the head was due to he has restless arms too! I used to build a giant wall of pillows to protect myself.😂.
Jay, what type of magnesium please?
Considering scientists are saying that our soil is depleted of magnesium thus we are getting less from the foods we eat. It's no wonder most people are magnesium deficient which could be the reason so many suffer from RLS.
I have had RLS since around age 20 (almost 32 now). The first time it happened really badly i freaked out and was reduced to tears because i didn't know what was happening. Everyone i talked to about it just brushed it off like it was nothing, but i would tell them they have no idea how maddening it is. I eventually just learnt to live with it, it comes and goes some nights worse than others. Mine kicks in either before i go to bed, or what i call the "magic moment" which is between 20-30 min after laying down in bed, which is usually when I'm almost asleep lol, it's like my legs are saying "haha you're not falling asleep yet lets go for a run" :( . I have yet to seek actual medical advice, but have been thinking about it. My 2 most effective methods of preventing it have been sexual release or making sure my bladder is empty before bed and going to the toilet as soon as it kicks in.
Oh my god I am aslo facing this for past 10years
even I couldnot able to explain the condition to others pls suggest treatment to overcome this case condition if u found
I take kratom.. Completely makes it go away
Me too . Ejaculation is the only thing … I think this has to do with a dis balance in dopamine .
I have experience this I go to bed in 8 I sleep between 1 or 2 iuse melatonin so that it can help me go to sleep.. I'm scared everyday worst will happen to me..
The first time your RLS happend it came out of nothing ? So u never had any symptoms before ? Mine starts from nothing in the middle of the night . i woke up and there it was. In arms and Legs ...
It really tested my patience to be told by 'friends' that I just needed to get more exercise! They missed the point that the legs are not at fault but the extrapyramidal nervous system is. I have been taking pramipexole for years and really forcing myself to keep the lid on the dose. So 0.1mg still works for most of the night but I sometimes needed a half dose in the middle of the night.
I love this! I recall as a kid I got it bad & my doctors said it was all n my head, only proper studies proved it wasn’t psychological. Dr’s listen 2 Ur patients & B aware of biases against minorities & women’s testimony
And children's! They may not know how to describe what is going on. But, you still need to listen, and not dismiss them.
I’ve had restless legs for a long time, but i have found doing two things that have really worked for me. When I get RLS in the night I do one of the following.
1. Do the yoga pose “Legs Up The Wall Pose” (Viparita Karani) for a few minutes. It is literally lying down and placing your legs up against a wall. There are loads of videos on CZcams on how to do it. It helps with blood flow .
2. You need something cold against your calves. Like placing a cooling mat on them. You can buy cooling mats for cats and dogs, these are just the job. Another thing and i know and it sounds stupid, is to place your calves on a cold metal radiator for a few minutes , it really does work . I use this one more than the mat. My legs feel the cold straight away and my RL are gone in a few minutes.
One other very important thing is have a look on CZcams at the great WIM HOF (THE ICE MAN) methods , like taking a cold shower everyday. It seems the cold does heal restless legs and with my experience the heat makes it worse.
U didn't explain or show what it look like. I just wanted to be sure about my condition.
Hi, I am 52 and have had RLS for about 10 years, I want to point out RLS is not a pain, it’s not your legs kicking out uncontrollably, it’s a sensation I get in my legs and sometimes in my arms that is like the feeling you have when you yawn and stretch, and it gets so intense you need to move your legs to make it go away, it only comes on when I lay down, so if I lye on the couch during the day or bedtime, I have tried ropineral, gabapenton, pregabalin, I have tried hot showers that only makes the feeling go away until my legs cool down then it’s back again. So I need to get up and walk around to make it go away, but it comes back when I lye back down, so sometimes all night I am up, BUT I did stumble onto a pain killer about 6 years ago when I had a crock back for a while, the doctor gave me Tremodol for that and I realised it also makes RLS completely go, so I have Tremodol every night, I know that’s not good but what is the less of the 2 evils Tremodol or no sleep, I chose Tremodol so I can go to sleep, if you are reading this you too have real RLS like me and it sucks, I don’t have trouble going to sleep I do have trouble with is not being able to go to sleep until this RLS feeling is gone first…..right? all the best, reply if you need cheers Dennis
I have had RLS since a child, I am 74 now. My mother and grandmother also suffered. Mum luckily was able to receive medication which I also began taking some 10 yrs ago. I remember as a child trying to wedge my feet between the mattress and blankets to keep them tight and still. In recent years my arms have begun to be affected but an increase in meds have stopped that. I have spent many nights walking around, bare footed, on cold tiles, kicking into the air trying to rid myself of the crawling awful sensation. My blood tests are always spot on. I exercise daily and 6 out of 7 nights am asleep by 9pm but I must take the pramipexole by 6pm as that is when it begins. Sometimes it occurs late afternoon. Of course it disturbs my husband's sleep on my nights of kicking until I get up and walk around for a couple of hours. Lying in bed keeping rigid only allays the feeling whilst in that state so not exactly comfortable either!
Try an aspirin if you are allowed to take them.yhey are a blood thinner too😊
I wasn’t diagnosed until I was 55. I’d suffered from teenage years. A sleep study to look for narcolepsy found RLS first. Put on Lyrica and it stopped on the first night. 6 weeks later sleep study was repeated, and yes I have narcolepsy as well.
I have had RLS. for 37 years and it is worse than having severe pain. It is being controlled with Ropinirole and Gabapentin. My son also seems to have it (he’s 41) but his is only when he’s awake and he can sleep just fine. I’m wondering if my teenage granddaughter has it as it seems she gets real restless around 8 p.m. and feels like she needs to run around the block. I get it in both arms and legs but thankfully the medicines work for me otherwise I would literally go mad.
I have RLS mildly in that I don’t get it every day, but when I do it’s almost always when I drink and I also get it in my arms. My mother also has RLS. We learned on our own that iron pills help to ease the symptoms once my mom was diagnosed with an iron deficiency. Our GP had no idea what RLS was. I also found that a burst of dopamine can be enough to let me sleep if it’s acting up. I had it so bad a while back that nothing was working and my doctor prescribed me the medication the woman talks about. It was 2mg and I immediately got sick from it. She lowered the dose to .5 but I haven’t touched them since.
After watching this I feel my issue is peripheral neuropathy after receiving ABVD over 15 years ago; thank you for making this video.
Adding this to the list of things I didn't know I suffered from until someone mentioned it.
On this list I also have ADHD. Anorexia. dyslexia. Multiple chemical sensitivity. And now Restless leg syndrome. Great.
I have suffered from RLS for most of my life, but it only got intense in my mid to late 40s. It gets worse when my iron levels are low. It's something I wouldn't wish on anybody. I have cried myself to exhaustion on many occasions. I am on 2 medications for it at the moment, which seems to be working for now. But yes, it can be very debilitating.
Try an aspirin if you are allowed them. No kidding it sure works for me😊