I'm currently working on a follow-up video on MEDICATIONS for RLS! There's a lot of research to go over and my health hasn't been the best lately, so it's taking longer than I'd hoped. I'm aiming to get it out late Jan or early Feb 2024. Subscribe and click the bell so you don't miss it!
You are the first person that I’ve heard to truly understand how we suffer. Mines is so severe, my legs jump up from the twitching. Magnesium does help me to go the sleep but if I wake up, my rls may start. Exercise helps. The quickest release for me is pressure on the nerve in the back of my hip area works best. Love sharing with others that understand.
Ughh, it's so awful, isn't it. I get the twitching and sudden leg jerks when mine gets bad. Once I was sitting down at a friend's house for a movie night. I had a drink in my hand and my hand was resting on my knee. My leg suddenly jerked and sent the drink flying! I can laugh about it now, but at the time it really upset me. (Sorry to talk about myself, I just wanted to say, I get it.) Can you tell me more about your pressure on the nerve trick? Whereabouts on your hips do you press? x
It is about in the middle of the buttocks. It relaxes deep pushing. It relaxes me so well, I fall to sleep very quickly and seems to last all night. Of course it is rare to have my honey wake up to do this. I also use small massage ball sometimes also. hope it helps.
I have always slept with my hip twisted and never knew why. I have severe rls where I get shooting sensations that cause my entire leg to jump up. Wild connected thank you to the poster and commenter. I'm a nursing student and today I heard how doctors do most of what nurses do here in Canada and wow wild 😅. Would be amazing to work with doctors like that
Hello from Canada! Excellent, excellent video! I'm 60 now and like many, have lived with RLS for many years. My symptoms are much better now, but it took a lot of trial and error, many doctor visits and experimenting. The right magnesium supplement is life changing! I will forward your video to my RLS friends and family. Thank for creating this, the more we know, the better!
@@wendymartinez1961 HI there! The magnesium I take is called Magnesium Bi-Glycinate 140. I take 1 capsule at bedtime. One thing that helps right away is peppermint oil spray on the feet. I mix pure peppermint oil from the health food store with a little water, in a small spray bottle and spray my feet on nights my RLS is really bad. You can buy peppermint foot spray at any pharmacy! Stretching exercises also help. I stand on the stairs with my heels hanging over the step and stretch my calves before bed. I'm also on 10mg of Flexeril which helps too. RLS is a terrible thing. I hope these tips help!
This is is most informative session I have heard. As a RLS sufferer for 40 years I have had symptoms during the daytime and even rarely in the morning.
Extremely well done video! I’ve been living with this wretched condition for 59y and i thought i knew everything. But you gave me some great ideas ! Thank you and best wishes restful sleep !
That stood out to me too! When I read that RLS is associated with ADHD and that they both involve a problem with dopamine, I wondered if they had the same root cause, or the same mechanism... The iron-dopamine hypothesis of RLS is well supported, but we still don't know exactly how it causes that restless feeling. Hopefully future research can tell us more. It's very likely that I've got ADHD too. Not the regular kind, but the inattentive subtype, which used to be known as ADD. I've got an appointment booked to hopefully get a diagnosis and/or some answers. Thanks for your comment x
@@chronicjillness332 I was diagnosed at 42 with combined, my entire life made sense from that point on! I'm pretty sure I became ill with M.E because of regular ADHD burnouts, now known to me as complete overwhelm. I now understand it more. Shame it took so many years of suffering! I hope you get the answers you're looking for xx
You've clearly done a boatload of research. Makes sense since you are a sufferer. I think, though, you absolutely have to discuss medications. I am now 68 and this began around 28, getting worse over the years. Way back when, I didn't know what it was. Just called it The Twitches and I lived as a suicidal insomniac. Finally saw a neurologist and got a diagnosis when I was 45ish. I have tried everything but iron infusions. You are absolutely right about the augmentation from dopamine agonists (that drs don't tell you about). U.S. drs have moved away from the dopamine agonists and are now prescribing things like Gabapentin Enacarbil (I learned that from a CZcams video; never tried it). Since 2016 I've been taking Methadone, 5 - 10 mg, at bedtime. It is an absolute blessing, effective 80 percent of the time. Anyway, thank you for helping people understand this debilitating condition.
Thanks for the feedback. I'm actually working on a follow-up video on medications for RLS right now. I'm hoping to have it out in January, but it might end up being early February at this rate. My health hasn't been the best lately and it's slowing my video progress. I'm sorry to hear of your struggles. Insomnia can truly drive a person to despair. It's so horrendous and so incredibly frustrating. I'm glad you've got some relief from the methadone now x
This is the best talk about RLS l have seen. I have it every night and dont like to take meds but do. I walk around all evening. Cant rest and sit at night. I stretch. I am 86 though. I cant stay in bed fairly soon. So take more meds and eat bread and butter and go back to bed and sleep off and on all night. I am a zombie till 1 pm or so. Keep working on getting it better
Thanks for the feedback! I'm sorry it's so hard for you. I hope some of my tips can help. I find squats are good for quick relief, followed by calf stretches if I've got the energy. Then, it's important to try to get to sleep as fast as possible, before the RLS comes back. To do that I use my sleep hack techniques. There's a short video about them on my channel x
I have gone through a few doctors. My latest Doctor is very new and very much willing to listen to my ideas and requests. She is the first one to agree to do a full iron work-up. All my previous doctors have brushed me off. I see her next week to get the results. Thanks again for your channel. Of course it is 4am and I am up walking around trying to calm my RLS so I can get a couple hours of more sleep before my alarm goes off. Best to you and your family, Craig
I had really bad restless leg a few years back. I started following Dr. Ken Berry here on youtube and did what he said and a year later restless leg was gone....along with many other issues including arthritis of the lungs, completely clear now. Maybe it be worth it do you, certainly was for me. Good luck.
@@chronicjillness332 You can do a search on his youtube page for restless leg if that helps. If he sighting from studies he put where you can find it to read on your own. Like when Doctor put up the research notes.
Thank you, very informative... Have RLS bad lately also ME/CFS, Venous Insufficiency and now Meniere's disease! Always desperately seeking help and information... Thanks again and God bless you!!!
Thank you so much. I didn't have a paint roller handy so I used a horizontal lint roller and stuck some fake fur on it. I've tried so many things but this is the first things that helped.
Thank you so much for this. Not many things being me to tears but RLS can do it. It goes to my arms as well when really bad. Feel like jumping off a bridge. Tramadol is the only drug that seems to curb it but it doesn't completely relieve it, so i also take quinine at night. I'd love to dump both of those. I will try your suggestions.
What an excellent video! Thank you! 😊👍🏻 The little paint roller idea sounds GENIUS!! I’m a little annoyed that I never thought of it myself! I’ve been pretty creative - (not always in good ways) - for what lengths I’ll go to for some relief: gentle/hard rubber mallet pounding on my calves - which my muscles definitely pay for in the morning). 😳 What’s crazy for me is 😢that I don’t really seem to have ANY RLS symptoms AT ALL throughout the day or evening. However…. At night, when I get into my comfy bed, pull the blankets up, snuggle into my pillow and I’m feeling THE MOST COMFORTABLE EVER ☺️🛌 - and I’m ready to float off into dream-land 😴💭🐶🌈….. - THAT’S WHEN THE EVIL BEGINS! 👿👹🦵🏻😫🤬 It becomes almost unbearable! I’ve tried taking magnesium and also the magnesium spray but didn’t think it was giving much relief. Maybe I’ll try it again. And the paint roller - I’m excited to give that a try! My husband keeps hiding my rubber mallet. 🔨 I bought it at Canadian tire and apparently it’s used for pounding out dents in car frames. ¯\_(ツ)_/¯ Anyway - great video! Again, thank you so much! 😊❤️🇨🇦
I'm sorry it's been so hard for you. RLS is so frustrating and infuriating! It always hits right when you're trying to relax. Lol at the rubber mallet. I mean, if it works, it works! But as you say, the mallet may make your legs feel better at the time, but it may increase soreness and restlessness the next night. So maybe a nice fluffy paint roller is better! x
@@chronicjillness332 Haha, the mallet doesn’t really ‘work’ in the way you might think… I guess what is does is cause some pain in my calves - which then over-takes the GRRR of RLS… and gives me a temporary but much welcomed (while I’m pounding) break from it. However, at times (out of RLS frustration), I get a bit carried away with it and I pound too hard & for too long. 😳 You ever go a long time without exercising and then suddenly decide you’re going to start a new (extremely vigorous) routine - and you get into it so much, you just can’t stop so you go at it hard core? You go to bed feeling like you’ve done an amazing thing for your body… 😊 When you wake up in the morning and get out of bed, you feel like you’ve been hit by a bus and everything hurts! That’s what I sometimes (accidentally) do to my legs with my lovely mallet (and why my husband sometimes hides it on me). My muscles are so sore in the morning! It’s awful because I always wake up with a full bladder and run to the bathroom - but that’s not quite case when I’ve beaten up my calf muscles through the night. I wake up with a full bladder only I’m walking like a 90 year old woman with a walker (sounding like I’m stomping like a slow moving T-Rex)…. saying, “Ow, ow, ow…. Ow, ow, ow)… all the way there. It’s really a trade off to use that rubber mallet in a fight against the RLS at night. ¯\_(ツ)_/¯ So…. As you can imagine, I’m excited to try a small paint roller. It makes sense! My husband is going to pick one up for me on his way home from work tonight. We’ll see! 🤞🏻 Thanks for your response! 😊
@@Miss_Maggie Lol hilarious! I know what you mean about going too hard on your muscles because it feels good at the time, then being all stiff and sore the next day. Hopefully the paint roller is better. I know I said not to press too hard, but I find that I can get away with firmer pressure using the paint roller, because the force is so diffused. I find it doesn't cause the same soreness and restlessness the next day, like you get with massage techniques where the pressure is concentrated in a smaller area. And I know what you mean about fighting pain with pain. Something I used to do was to put in my old dental plates (retainers). They were from when I was a teenager, and over the years my teeth have shifted a little. This means the plates feel really tight and hurt my teeth a bit. It's just enough pain and discomfort that it distracts from my legs. It's also sort of fun to pop them on and off my teeth, kind of like a fidget toy for your mouth! I know that sounds pretty weird, but desperate times call for desperate measures lol
I eagerly await your videos, and you didn’t disappoint! I love how informative they are and you make me laugh with your bloopers at the end, although with this video your ‘tada’ with the paint roller really made me LOL 😂
I have suffered from ME/CFS for 43 years and RLS has been one of my many symptoms. My mother suffered from RLS all her life. It’s a horrible affliction. I do find Magnesium helps and yes, I have to put weight on my legs. I have to get up and walk around my unit. Do you use CBD or THC oil? I am a disabled pensioner and find it extremely difficult to afford these oils. I live in Sydney but my doctor does not give scripts for medicinal marijuana. Thanks for the great video. 💛🙏💛
I'm from Sydney too, though I moved a little ways south. The topical oil I use is mostly CBD, though it may have a little THC in it. I do take a combined CBD and THC formulation internally, though that is more for pain. There really are a lot of benefits to medical marijuana (MM), so it might be worth talking to a doctor who can prescribe it, if only for this issue. I'll have to do some more reading and see if I can find some studies on MM for RLS.
Oooh interesting. I use toeless compression socks at night for another condition, but I'll have to see if they improve my RLS. I might give tonic water a try too x
Hello from the Great White North (Canada), although it seems to be on fire this year (scary). I am 62 and have being dealing with RLS all my life. I am still struggling with treatments and finding knowledgeable doctors. Your video was very helpful and I very much appreciate your organized approach to presenting the data. I have been looking for a simple protocol for diagnosing and treating RLS. I have toyed with the idea of creating something on my own and your video comes very close to that. I have subscribed to your channel and I will wait for your next installment. Thanks
Thank you so much! I'm glad my video could help. I recall that one of the sources I linked in the description of this video is basically a treatment algorithm designed for doctors, but it could be useful for patients to have a read and understand their treatment options. You might want to check that out for yourself. It sounds like you are fairly knowledgeable on the condition. Sometimes it helps to print out a good article and give it to your doctor. If you've got a good doctor who isn't too arrogant (not always easy to find), they will appreciate it, as they are usually very busy people and sometimes miss the latest research. Providing an informative review article can help them treat their patients more effectively.
You have excellently summarised the symptoms and remedies of disease . This condition needs management involving all medication exercise diet and tools of massage .Vey nice and helpful.Regads
I suffered with RLS for years. I wanted to rip my legs off. I tried different medications,but nothing worked. My doctor then suggested vitamin B12. Within 5 days all signs and symptoms were gone.I am now able to lay in bed and not want to get up and walk around the room every 5 minutes.
I'm so glad you got some relief. B12, of course! The papers I read didn't mention it in relation to RLS but it's crucial for neurological health so I'll be sure to mention it in my next RLS video. Low B12 can also cause anaemia, which can cause RLS.
Hello from Canada. My go to for RLS is magnesium. I generally take 600 mg bisglycinate at bedtime. It helps to initiate sleep and with leg cramps as well.
It's awful isn't it. Yes, RLS can be caused by medication, and sometimes it's a withdrawal symptom when you're tapering off a medication. Thank goodness it's usually temporary in these cases. I'm glad it was temporary for you x
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.
@@chronicjillness332 Off the market products are not liable legally, hear me out case in point, they aren't medically prescribed for a reason. They are not medical pacifiers used by the sick, elderly or at nursing homes. It's just a business like any other sauna clinic, hotbath,steam room.scented aroma therapy. Old fashioned radiators in europe homes with water caps may cause legionnares disease. My point is that there is no easy way, but upgrade each household with todays thermal climate control system.
@@chronicjillness332 Off the market products are not liable legally, hear me out case in point, they aren't medically prescribed for a reason. They are not medical pacifiers used by the sick, elderly or at nursing homes. It's just a business like any other sauna clinic, hotbath,steam room.scented aroma therapy. Old fashioned radiators in europe homes with water caps may cause legionnares disease. My point is that there is no easy way, but upgrade each household with todays thermal climate control system.
Interesting...I need to be on 2 of these meds and can't taper off at the moment. Though I remember getting RLS before I was on them. So, while they may not be the primary cause, they may be exacerbating my RLS. Unfortunately coming off them is not an option at the moment.
Please do a video on your experience with medications. I have had some "interesting" experiences and am now have discontinued the latest due to some very bad reactions. I continue my journey to find a way to get a good night's sleep.
Request noted! Also, I'm sorry to hear the meds didn't work out for you. It takes a bit of trial and error. I probably won't be able to put the RLS medications video out anytime soon, as I've got others I'm currently working on. But I'll add it to the list of future videos. Seems from the comments that a lot of people are looking for help and info on RLS. I am also planning to do some videos on sleep and hacks for better sleep, as soon as I have the spoons for them x
I used to drink diet soda all day long. I read too many articles about the dangers of artificial sweeteners, so I stopped. After a month, it was hot and I thought a diet soda would be nice. First, I could taste the formaldehyde. That night it felt like my legs were on fire. Artificial sweeteners are neuro exciters. A couple years ago, I bought a package of spanish rice from the dollar store. The first ingredient was Monosodiumglutimate (MSG). It tasted terrible, so I didn't eat much. That night the same thing happened. Fire legs. So everyone with RLS should eliminate these chemicals. Also, I find some magnesium at bedtime is really helpful. And CBD lotion helps, too.
Well done for mentioning augmentation! Are you in the UK? I'm asking because there's some great resources in the UK. Although the NICE guidelines do need changing in order to avoid the dreaded augmentation for patients. Of course NICE are dragging their heals (no pun intended), similar to how they did with ME/CFS here in the UK!
Thanks! I don't know why augmentation isn't talked about more. I'm in Australia, though I think some of the resources I used to research this video were from the UK. The NICE guidelines for mecfs are certainly better and further ahead than the ones for Australia!
@@chronicjillness332 That's very sad to read. Here we treat ME/CFS with CBT and you can't access anything beyond this unless you pay privately for treatment. It's shocking treatment. Even if you pay privately, most of the Drs that would treat are a bit 'woo' in my opinion. That and the fact that they're still stifled by regulations that restrict their ability to prescribe treatment that has the potential to help. Mmmm, yes augmentation is a taboo subject - all around. It's nothing but harmful to patients. Thanks for making your vids - I'm following along now! :) Take good care of yourself.
@@deel2435 I'm glad to have you along! I should have a new video out in the next day! Unfortunately Australia is still treating ME/CFS with GED and CBT. I think they have recently changed the recommendations but most doctors continue to prescribe these outdated and dangerous therapies. There's really not much help or support out there for chronic illness treatment here, and it sounds like it's similar in the UK :(
@@chronicjillness332 Graded Exercise? Oh wow. Many Drs do the same here, despite a change in the guidelines. You're too right, it's dangerous. I had a great session today with a Dr (something minor) who said more-or-less: 'Most Drs aren't smart at all, they're really dumb and only think about things inside their small wheelhouse. They're memory-banks and they regurgitate info. A good Dr will think about how they can help you even if that means referring you to someone else. But always making sure that it's what you the patients needs AND wants'. I have to say I was left speechless. There's a few good eggs out there, I hope you find your way to them and they're able to help you. In the mean time, keep pacing as they say! 🐌🐌🐌
Thanks for your feedback! I've put out two additional videos on medications for RLS. I'm going to put out a third video talking about my personal experience with meds. I was on Lyrica for a while and it made me put on so much weight! So I know how you feel x
Thank you so much for sharing your knowledge for this horrible condition. I was diagnosed with rls but I also experience debilitating leg and feet cramps. I’ve had it basically most of my adult life and the worst thing as you said is the sleep deprivation. My doctor prescribed repinol which made things worse and I recently asked him to give me a muscle relaxant instead for emergency use if need be. I don’t want to take any drugs that I would build a tolerance to. I’m going to try taking the iron supplement. Does anyone experience leg and feet cramps as well as the twitching? I also noticed that when I’m sick or have a cold and stress increases the intensity. Any comments appreciated. Thanks
I'm sorry to hear it's been so hard for you. Sleep deprivation is the worst. Has your doctor checked your mineral levels? Sometimes cramps can be worse when you're low on electrolytes, in which case an electrolyte supplement could help. I go into more detail about electrolytes in my video on hydration, which you can find on my channel. It's more in relation to orthostatic issues than muscle cramps, but if you check the comments I linked to a bunch of electrolyte blends that might be useful. I'm also planning to make a series of videos on sleep and treating insomnia. Hopefully some of my tips will help you there x
Magnesium helps me! Taken in an acidic base helps absorption into the body.. Love your paint roller idea! Thank you I will get one with a long handle for self application; also the get up on legs right away at the onset is something I will try as I usually try to bare it for as long as possible, get up ,cant help but stretch and take cal mag
I've had this for years and after ditching pregabalin bcos it caused swelling in face hands and legs... I'm left with taking a cocodamol every night .. It relaxes my legs just enough to get some sleep.. If I try not taking anything and the pain sets in then no matter what I take, nothing helps.. Interestingly I'm slightly low in b12 and iron so will start supplementing to see if that helps... Even tried the old soap in the bed hack but no luck!
I've tried almost everything. The pramipexole no longer helps. It used to be just my left ankle/calf, started when I was about 11. But now I get it in both legs, hips and sometimes my arms. I'm about to ask my Dr for medical marijuana, but I'm pretty certain here in Ireland it won't be prescribed. Tried tonic water, exercise, massage, magnesium, magnesium oil, hot baths, cold plunge, saunas, infrared light, and nothing works. I'm 60 now and it's so bad that it often goes on till 5am. It's soul destroying. 😢
That's absolutely awful :( It sounds like your RLS has been augmented by the pramipexole, in which case your doctor should have switched you to a different med by now. I think my latest video, the one on medications for restless legs syndrome, would be helpful for you. It explains why staying on some medications can make RLS worse, and what your other options are. I hope you get some relief soon x
Yeah, it's great stuff if you can get your hands on it. Great for topical pain relief too. If you've got sore muscles or joints, rubbing some on is surprisingly effective. (At least, the stuff I've got works well, but the effectiveness probably depends on the concentration of active ingredients in the particular product you use.)
I was using magnesium gel on my calves at night before going to bed. My doctor recommended I try Arnica gel instead. I just started it so I can't tell if it's going to do the trick or not but so far it's working! I'm sleeping better and my legs feel like I'm wearing compression stockings.
Low dose naltrexone completely banishes RLS, afaik, Im the first to find this out. Works right away, and if you stop, RLS will generally return in about a week, The good news is that LDN significantly improves most any chronic inflammatory or pain condition so theres no reason to stop. The bad news is that few doctors know about this and most wont prescribe it. Whats worse, doctors that do often dont prescribe it properly and have no personal experience with it.
That's interesting! I knew LDN was good at treating fatigue and pain in some MECFS patients, but I didn't know it also worked on RLS. And yes, it's such a shame that some doctors refuse to consider it as an option for their patients. Hopefully that attitude will change.
LD Naltrexone doesn't relieve me of RLS. Never has. I have Sinemet medication, magnesium glyecinate, magnesium butter, and an essential oils mixture which help somewhat. Nothing has gotten rid of this curse. I have FM/CFS and several other chronic illnesses.
One of the worst things about the medicines is after time you cannot sleep if you don’t take your meds that night. I also use medical Marijuana (legal in Illinois), Indica, with better relief than my meds.
Glad to hear the medical marijuana helps you. Yeah, it sucks to be dependent on your medications, but I suppose it's better than battling the illness itself.
I have always had it. V Caused me so much suffering over the years i would go as far to say that the lack of sleep was a direct cause of bad decisions and costing me a better education better jobs .even relationshops . Self medicating when at witts end . Now just turning 60 its became a monster ive been to so many drs tried the medications.the couple that actually worked only lasted short time before turning on me making them unbearable at new levels lasting 3 or 4 days with out any relief to the point i was ready to end it but i couldnt think long enough to carry out anything im suffering now no sleep between 11pm untill 9 am usally sleep after 9am but sometimes if i dont get up and get busy doing something i atill will lay there tryi g to fall askeep . My life was robbed the drs. Just never have helped
That sounds awful!! I'm so sorry to hear how hard it's been for you. Yeah, RLS is no joke. It can take a huge toll on your life. Have your doctors talked about trying opioids? They are now the recommended choice for augmented and treatment-resistant RLS. I talk about them more in my follow-up videos on RLS medications, if you're interested.
I can usually feel when they are going to play up. The restless feeling starts out really faintly, and I try to get up straight away to stop it progressing further, then I make sure to use the roller right before lying down in bed, as a preventative measure. If the restlessness has already set in, I find massage really soothes it. Massage will relieve it for a little while, but it will usually come back, so I try to do the massage last thing before I turn the lights out. That way I give myself the longest window of time to fall asleep before the restless feeling builds up again. As soon as I turn the lights out, I use my sleep hack techniques to get to sleep as soon as possible. I just released a video about them last week, if you are interested x
I have had Rls For a long time with fibro. At the beginning of the year symptoms started moving up my body. Now i have the same spastic movements in my upper abdomen. Do you have any insight into this?
@@IreneArndt if your RLS is spreading and getting worse, it could be a sign of augmentation (if you're on a dopamine agonist medication) or it could be a sign of a worsening iron deficiency. Best to talk to your doctor. I explain more about these things in my two follow-up videos on RLS, if you're interested. I hope you find some relief x
I'm 71 and have had RLS since child Said to be just a fidgety kid when tired Dad has as well. His cure was walking bare feet on cold concrete. I found listening to ENYA "watermark" is like someone's dog. Signal response. Magnesium useless.Sifrol helps but like you found it addictive and augmentation issue. Limit to 2 nights a week. Use to find sexual orgasm helps but for prostate cancer surgery now impossible Luv idea of paint roĺler. Ive used a vibrator massager helpful at times. Heavy blanket or any blanket horrible as i must cool down my legs before sleep is possible. Writing this at 5am as yet another night impossible to get any worthy sleep. Jumpy legs thrown bed sheets all over the place yet again. Sheets wear out quickly due to feet kicking excessively in my rare sleep. Cant sleep same bed as my partner anymore
That sounds awful. I hope some of my suggestions can help. The paint roller really is soothing, especially if you can get your partner to do it, since they can reach the backs of your legs and also apply more pressure. (Doing it myself, I find it harder to get the right angle and pressure.) I'll have a video about medications coming out soon x
If you find that topical magnesium helps, a footbath with magnesium could work, provided the magnesium content is high enough. Though you might find it more effective if applied directly to the offending muscles. Perhaps splash some of the Mg water onto your calves and thighs and rub it in? I did read that some people find cool or warm water soothing for their RLS. I think you've just got to experiment and find what works best for you x
@@dianamuro4528 I'm sorry you had to go through this. Magnesium doesn't work for everyone, especially those whose RLS is severe. Topical application of Magnesium oil to the affected muscles will be much more potent than putting it in your bath, but it still isn't always enough. For acute relief, doing squats can help. As many as you're able to do.
Hmmm I'm not sure. I mean, as I mentioned in the video, RLS is related to circadian rhythms and is always worse at night, but I don't know why for some people it's worse in the early evening, and for others in the middle of the night. I hope you get some relief x
Hi I have severe RLS . Have experienced augmentation and so the doctors increase dosage . My symptoms are so bad if I cut down on meds I am up the whole night . I have day time symptoms as well so I use the extended release medication . Very anxious about where it all is going to lead to . Long distance travelling on a plane or by car is horrible . I am in my seat on the plane only mealtimes . On my last trip I medicated myself so that I was knocked out . Would like to know about your medication experience
That sounds so awful 😢 Are any of the other treatments and things I mentioned options for you? Perhaps you could ask your doctors about accessing them? Psychiatric hospitals can provide TMS, for instance. Or is medical marijuana an option? Where there is known augmentation occurring, what I read recommends switching to a different sort of RLS med, cycling through the different families of meds to prevent tolerance or augmentation. Have you told your doctors your concerns? Doctors really should take the problem of augmentation more seriously. Oh man, long plane trips are the worst! I was on a 14 hour flight a few years ago, and my RLS was torture! Taking sleepy meds to knock yourself out is the way to go! I will make a follow up video about meds. I hope you find some relief soon x
I have had A severe case of RLS for 15 years of my 74 years. I was given Ropinirole for years which worked great until I started to suffer augmentation. I was up to 5 pills a day with no relief. I joined the RLS Foundation where I learned about augmentation and new drugs instead of Ropinirole. They are now not using Ropinirole like drugs to treat RLS because of augmentation. They now use gabapentin and opioids. I could not tolerate the Gabapentin at all and got no relief. I started to take a combination of two drugs which have helped me a lot. I take one 1mg Ropinirole at 7pm and two 50 mg Tramadol (opioid) one hour later. This reliefs most of my RLS symptoms at night. The only complication I have is when I eat too late at night and eat too much. This causes the meds not to get absorbed as quickly and I am up all night. It works for me. The one Ropinirole that I take at 7 pm will actually bring on the RLS symptoms for about 1 hour then it goes away. What a terrible disease.
Unfortunately, I don't know. It was an independent supplier who is now no longer in business. But if you look for a topical CBD product, you should be able to find something. I'm also hesitant to recommend names because cannabis products are illegal in some places and I don't want to get myself or anyone else in trouble. It was recently legalised for medical use in Australia, but I don't know enough about the technicalities to safely give recommendations.
Hmmm, I had never heard of kratom until your comment. At a glance, it may well help, but it has other dangers associated with it and is illegal in many countries, so using it for RLS is risky. Still, it would be good to see some clinical trials to find out if it's an effective and safe treatment for RLS or other conditions.
please don’t just blurt something out unless you’re willing to support your blurt with medical support, microwave?!?….and so why is rls primarily a female condition?
Do you have RLS and did the bar of soap work for you? I just told my IHSS client about the soap yesterday. She planned on sleeping with a natural bar made from oatmeal and almonds. I hope it worked.
@@healthyhomesteadingadventu1149 yes, I do have it. And I just put a bar of regular soap in my bed close to my legs. So far, it has worked for me. Sometimes I will put a couple of bars in my bed in case one gets lost in the covers or gets kicked to the floor.
cured mine, and multiple people and family members I know. Just a cheap bar of soap under the fitted sheet at the end of the bed. Worked for someone I know that very night, took me a couple of nights.
I'm currently working on a follow-up video on MEDICATIONS for RLS!
There's a lot of research to go over and my health hasn't been the best lately, so it's taking longer than I'd hoped. I'm aiming to get it out late Jan or early Feb 2024. Subscribe and click the bell so you don't miss it!
You are the first person that I’ve heard to truly understand how we suffer. Mines is so severe, my legs jump up from the twitching. Magnesium does help me to go the sleep but if I wake up, my rls may start. Exercise helps. The quickest release for me is pressure on the nerve in the back of my hip area works best. Love sharing with others that understand.
Ughh, it's so awful, isn't it. I get the twitching and sudden leg jerks when mine gets bad. Once I was sitting down at a friend's house for a movie night. I had a drink in my hand and my hand was resting on my knee. My leg suddenly jerked and sent the drink flying! I can laugh about it now, but at the time it really upset me. (Sorry to talk about myself, I just wanted to say, I get it.)
Can you tell me more about your pressure on the nerve trick? Whereabouts on your hips do you press? x
My Doctor prescribed me Requip ..it works great and non narcotic
It is about in the middle of the buttocks. It relaxes deep pushing. It relaxes me so well, I fall to sleep very quickly and seems to last all night. Of course it is rare to have my honey wake up to do this. I also use small massage ball sometimes also. hope it helps.
I have always slept with my hip twisted and never knew why. I have severe rls where I get shooting sensations that cause my entire leg to jump up. Wild connected thank you to the poster and commenter. I'm a nursing student and today I heard how doctors do most of what nurses do here in Canada and wow wild 😅. Would be amazing to work with doctors like that
Hello from Canada! Excellent, excellent video! I'm 60 now and like many, have lived with RLS for many years. My symptoms are much better now, but it took a lot of trial and error, many doctor visits and experimenting. The right magnesium supplement is life changing! I will forward your video to my RLS friends and family. Thank for creating this, the more we know, the better!
Thank you so much! I hope this information can help your friends too x
What magnesium supplements are you using
Which magnesium????
@@wendymartinez1961 HI there! The magnesium I take is called Magnesium Bi-Glycinate 140. I take 1 capsule at bedtime. One thing that helps right away is peppermint oil spray on the feet. I mix pure peppermint oil from the health food store with a little water, in a small spray bottle and spray my feet on nights my RLS is really bad. You can buy peppermint foot spray at any pharmacy! Stretching exercises also help. I stand on the stairs with my heels hanging over the step and stretch my calves before bed. I'm also on 10mg of Flexeril which helps too. RLS is a terrible thing. I hope these tips help!
check this first Reply
This is is most informative session I have heard. As a RLS sufferer for 40 years I have had symptoms during the daytime and even rarely in the morning.
Thanks! And sorry to hear about your RLS. It sounds awful :'(
Thank you very much for your effort to summarize your great knowledge and show it here for free. Appreciate that!
Extremely well done video!
I’ve been living with this wretched condition for 59y and i thought i knew everything. But you gave me some great ideas !
Thank you and best wishes restful sleep !
I'm so glad I could help!
ADHD and M.E sufferer here. I've always suffered rls, didn't know it was related to dopamine, very interesting!
That stood out to me too! When I read that RLS is associated with ADHD and that they both involve a problem with dopamine, I wondered if they had the same root cause, or the same mechanism... The iron-dopamine hypothesis of RLS is well supported, but we still don't know exactly how it causes that restless feeling. Hopefully future research can tell us more.
It's very likely that I've got ADHD too. Not the regular kind, but the inattentive subtype, which used to be known as ADD. I've got an appointment booked to hopefully get a diagnosis and/or some answers. Thanks for your comment x
@@chronicjillness332 I was diagnosed at 42 with combined, my entire life made sense from that point on! I'm pretty sure I became ill with M.E because of regular ADHD burnouts, now known to me as complete overwhelm. I now understand it more. Shame it took so many years of suffering! I hope you get the answers you're looking for xx
So is the me fybromyalgia check out Dr lenz
Please add video on RLS Medications. Thank you so much!!!
You've clearly done a boatload of research. Makes sense since you are a sufferer. I think, though, you absolutely have to discuss medications. I am now 68 and this began around 28, getting worse over the years. Way back when, I didn't know what it was. Just called it The Twitches and I lived as a suicidal insomniac. Finally saw a neurologist and got a diagnosis when I was 45ish. I have tried everything but iron infusions. You are absolutely right about the augmentation from dopamine agonists (that drs don't tell you about). U.S. drs have moved away from the dopamine agonists and are now prescribing things like Gabapentin Enacarbil (I learned that from a CZcams video; never tried it). Since 2016 I've been taking Methadone, 5 - 10 mg, at bedtime. It is an absolute blessing, effective 80 percent of the time. Anyway, thank you for helping people understand this debilitating condition.
Thanks for the feedback. I'm actually working on a follow-up video on medications for RLS right now. I'm hoping to have it out in January, but it might end up being early February at this rate. My health hasn't been the best lately and it's slowing my video progress.
I'm sorry to hear of your struggles. Insomnia can truly drive a person to despair. It's so horrendous and so incredibly frustrating. I'm glad you've got some relief from the methadone now x
This is the best talk about RLS l have seen. I have it every night and dont like to take meds but do. I walk around all evening. Cant rest and sit at night. I stretch. I am 86 though. I cant stay in bed fairly soon. So take more meds and eat bread and butter and go back to bed and sleep off and on all night. I am a zombie till 1 pm or so. Keep working on getting it better
Thanks for the feedback! I'm sorry it's so hard for you. I hope some of my tips can help. I find squats are good for quick relief, followed by calf stretches if I've got the energy. Then, it's important to try to get to sleep as fast as possible, before the RLS comes back. To do that I use my sleep hack techniques. There's a short video about them on my channel x
Try electrolights it helps me
@@chronicjillness332 my knees won't allow squats. Thanks for your advice.
good video. honest and well presented.
yes would like to see a video on meds.
I have gone through a few doctors. My latest Doctor is very new and very much willing to listen to my ideas and requests. She is the first one to agree to do a full iron work-up. All my previous doctors have brushed me off. I see her next week to get the results. Thanks again for your channel. Of course it is 4am and I am up walking around trying to calm my RLS so I can get a couple hours of more sleep before my alarm goes off. Best to you and your family, Craig
A good doctor makes such a big difference! I hope you get some answers soon. Hope you get some sleep too.
I had really bad restless leg a few years back. I started following Dr. Ken Berry here on youtube and did what he said and a year later restless leg was gone....along with many other issues including arthritis of the lungs, completely clear now. Maybe it be worth it do you, certainly was for me. Good luck.
Hmmm I've never heard of Ken Berry. I'll have to look him up. Glad you've got some relief x
@@chronicjillness332 You can do a search on his youtube page for restless leg if that helps. If he sighting from studies he put where you can find it to read on your own. Like when Doctor put up the research notes.
Great video, thankyou. I’m off to Bunnings tomorrow to get a paint roller!
Thank you, very informative... Have RLS bad lately also ME/CFS, Venous Insufficiency and now Meniere's disease! Always desperately seeking help and information... Thanks again and God bless you!!!
Wonderful video and SO welcome. The most comprehensive advice I've seen so far. You are an absolute angel.
Thank you so much!
Thank you so much. I didn't have a paint roller handy so I used a horizontal lint roller and stuck some fake fur on it. I've tried so many things but this is the first things that helped.
I'm so glad it's helped!
Thank you so much for this. Not many things being me to tears but RLS can do it. It goes to my arms as well when really bad. Feel like jumping off a bridge. Tramadol is the only drug that seems to curb it but it doesn't completely relieve it, so i also take quinine at night. I'd love to dump both of those. I will try your suggestions.
That sounds horrible 😢
It really does drive you mad. I hope some of the options I suggested can bring you some relief x
What an excellent video!
Thank you! 😊👍🏻
The little paint roller idea sounds GENIUS!!
I’m a little annoyed that I never thought of it myself! I’ve been pretty creative - (not always in good ways) - for what lengths I’ll go to for some relief: gentle/hard rubber mallet pounding on my calves - which my muscles definitely pay for in the morning). 😳
What’s crazy for me is 😢that I don’t really seem to have ANY RLS symptoms AT ALL throughout the day or evening.
However….
At night, when I get into my comfy bed, pull the blankets up, snuggle into my pillow and I’m feeling THE MOST COMFORTABLE EVER
☺️🛌 - and I’m ready to float off into dream-land 😴💭🐶🌈…..
- THAT’S WHEN THE EVIL BEGINS!
👿👹🦵🏻😫🤬
It becomes almost unbearable! I’ve tried taking magnesium and also the magnesium spray but didn’t think it was giving much relief.
Maybe I’ll try it again.
And the paint roller - I’m excited to give that a try!
My husband keeps hiding my rubber mallet. 🔨
I bought it at Canadian tire and apparently it’s used for pounding out dents in car frames.
¯\_(ツ)_/¯
Anyway - great video!
Again, thank you so much!
😊❤️🇨🇦
I'm sorry it's been so hard for you. RLS is so frustrating and infuriating! It always hits right when you're trying to relax.
Lol at the rubber mallet. I mean, if it works, it works! But as you say, the mallet may make your legs feel better at the time, but it may increase soreness and restlessness the next night. So maybe a nice fluffy paint roller is better! x
@@chronicjillness332 Haha, the mallet doesn’t really ‘work’ in the way you might think… I guess what is does is cause some pain in my calves - which then over-takes the GRRR of RLS… and gives me a temporary but much welcomed (while I’m pounding) break from it.
However, at times (out of RLS frustration), I get a bit carried away with it and I pound too hard & for too long. 😳
You ever go a long time without exercising and then suddenly decide you’re going to start a new (extremely vigorous) routine - and you get into it so much, you just can’t stop so you go at it hard core?
You go to bed feeling like you’ve done an amazing thing for your body… 😊
When you wake up in the morning and get out of bed, you feel like you’ve been hit by a bus and everything hurts!
That’s what I sometimes (accidentally) do to my legs with my lovely mallet (and why my husband sometimes hides it on me). My muscles are so sore in the morning!
It’s awful because I always wake up with a full bladder and run to the bathroom - but that’s not quite case when I’ve beaten up my calf muscles through the night.
I wake up with a full bladder only I’m walking like a 90 year old woman with a walker (sounding like I’m stomping like a slow moving T-Rex)…. saying, “Ow, ow, ow…. Ow, ow, ow)… all the way there.
It’s really a trade off to use that rubber mallet in a fight against the RLS at night.
¯\_(ツ)_/¯
So…. As you can imagine, I’m excited to try a small paint roller.
It makes sense! My husband is going to pick one up for me on his way home from work tonight.
We’ll see! 🤞🏻
Thanks for your response! 😊
@@Miss_Maggie Lol hilarious! I know what you mean about going too hard on your muscles because it feels good at the time, then being all stiff and sore the next day. Hopefully the paint roller is better.
I know I said not to press too hard, but I find that I can get away with firmer pressure using the paint roller, because the force is so diffused. I find it doesn't cause the same soreness and restlessness the next day, like you get with massage techniques where the pressure is concentrated in a smaller area.
And I know what you mean about fighting pain with pain. Something I used to do was to put in my old dental plates (retainers). They were from when I was a teenager, and over the years my teeth have shifted a little. This means the plates feel really tight and hurt my teeth a bit. It's just enough pain and discomfort that it distracts from my legs. It's also sort of fun to pop them on and off my teeth, kind of like a fidget toy for your mouth! I know that sounds pretty weird, but desperate times call for desperate measures lol
I love the giggles and cackles at the end!
I eagerly await your videos, and you didn’t disappoint! I love how informative they are and you make me laugh with your bloopers at the end, although with this video your ‘tada’ with the paint roller really made me LOL 😂
Thanks for the feedback! I'm glad you like the bloopers x
Thank you...your content has helped me formulate ways to improve my health.
I'm so glad to hear this!
I have suffered from ME/CFS for 43 years and RLS has been one of my many symptoms. My mother suffered from RLS all her life. It’s a horrible affliction. I do find Magnesium helps and yes, I have to put weight on my legs. I have to get up and walk around my unit.
Do you use CBD or THC oil?
I am a disabled pensioner and find it extremely difficult to afford these oils. I live in Sydney but my doctor does not give scripts for medicinal marijuana.
Thanks for the great video. 💛🙏💛
I'm from Sydney too, though I moved a little ways south.
The topical oil I use is mostly CBD, though it may have a little THC in it. I do take a combined CBD and THC formulation internally, though that is more for pain.
There really are a lot of benefits to medical marijuana (MM), so it might be worth talking to a doctor who can prescribe it, if only for this issue. I'll have to do some more reading and see if I can find some studies on MM for RLS.
Tonic water with kinin and toeless compression socks helps me.
Oooh interesting. I use toeless compression socks at night for another condition, but I'll have to see if they improve my RLS. I might give tonic water a try too x
Hello from the Great White North (Canada), although it seems to be on fire this year (scary). I am 62 and have being dealing with RLS all my life. I am still struggling with treatments and finding knowledgeable doctors. Your video was very helpful and I very much appreciate your organized approach to presenting the data. I have been looking for a simple protocol for diagnosing and treating RLS. I have toyed with the idea of creating something on my own and your video comes very close to that. I have subscribed to your channel and I will wait for your next installment. Thanks
Thank you so much! I'm glad my video could help. I recall that one of the sources I linked in the description of this video is basically a treatment algorithm designed for doctors, but it could be useful for patients to have a read and understand their treatment options. You might want to check that out for yourself. It sounds like you are fairly knowledgeable on the condition.
Sometimes it helps to print out a good article and give it to your doctor. If you've got a good doctor who isn't too arrogant (not always easy to find), they will appreciate it, as they are usually very busy people and sometimes miss the latest research. Providing an informative review article can help them treat their patients more effectively.
You have excellently summarised the symptoms and remedies of disease . This condition needs management involving all medication exercise diet and tools of massage .Vey nice and helpful.Regads
I suffered with RLS for years. I wanted to rip my legs off. I tried different medications,but nothing worked. My doctor then suggested vitamin B12. Within 5 days all signs and symptoms were gone.I am now able to lay in bed and not want to get up and walk around the room every 5 minutes.
I'm so glad you got some relief. B12, of course! The papers I read didn't mention it in relation to RLS but it's crucial for neurological health so I'll be sure to mention it in my next RLS video. Low B12 can also cause anaemia, which can cause RLS.
Hello from Canada. My go to for RLS is magnesium. I generally take 600 mg bisglycinate at bedtime. It helps to initiate sleep and with leg cramps as well.
I haven't heard of that form of magnesium before. I'll have to look into it. Thanks for the tip!
I would definitely like to here about your medication experience. I’ve been on more than 5
Medication side effects have caused this in myself unfortunately. It’s so unpleasant. Thankfully it ceased once I stopped that particular drug.
It's awful isn't it. Yes, RLS can be caused by medication, and sometimes it's a withdrawal symptom when you're tapering off a medication. Thank goodness it's usually temporary in these cases. I'm glad it was temporary for you x
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.
Hmmm, interesting. I like the idea of trying to get your room to as close to natural conditions as possible. A humidifier or dehumidifier could help.
@@chronicjillness332 Off the market products are not liable legally, hear me out case in point, they aren't medically prescribed for a reason. They are not medical pacifiers used by the sick, elderly or at nursing homes. It's just a business like any other sauna clinic, hotbath,steam room.scented aroma therapy. Old fashioned radiators in europe homes with water caps may cause legionnares disease. My point is that there is no easy way, but upgrade each household with todays thermal climate control system.
@@chronicjillness332 Off the market products are not liable legally, hear me out case in point, they aren't medically prescribed for a reason. They are not medical pacifiers used by the sick, elderly or at nursing homes. It's just a business like any other sauna clinic, hotbath,steam room.scented aroma therapy. Old fashioned radiators in europe homes with water caps may cause legionnares disease. My point is that there is no easy way, but upgrade each household with todays thermal climate control system.
Brilliant video. Thank you!
Hello from Canada! I have severe RSL. This wonderful video has given me hope. Please, please tell me what RLS meds you are on! Thanks you so much.
I'm glad my video could help. I'll make another one on RLS meds, but not straight away. I've got a few others lined up first x
Stopping melatonin, seroquel and zoloft was what worked for me
Interesting...I need to be on 2 of these meds and can't taper off at the moment. Though I remember getting RLS before I was on them. So, while they may not be the primary cause, they may be exacerbating my RLS. Unfortunately coming off them is not an option at the moment.
Please do a video on your experience with medications. I have had some "interesting" experiences and am now have discontinued the latest due to some very bad reactions. I continue my journey to find a way to get a good night's sleep.
Request noted! Also, I'm sorry to hear the meds didn't work out for you. It takes a bit of trial and error. I probably won't be able to put the RLS medications video out anytime soon, as I've got others I'm currently working on. But I'll add it to the list of future videos. Seems from the comments that a lot of people are looking for help and info on RLS. I am also planning to do some videos on sleep and hacks for better sleep, as soon as I have the spoons for them x
Really great video, thanks.
I used to drink diet soda all day long. I read too many articles about the dangers of artificial sweeteners, so I stopped. After a month, it was hot and I thought a diet soda would be nice. First, I could taste the formaldehyde. That night it felt like my legs were on fire. Artificial sweeteners are neuro exciters. A couple years ago, I bought a package of spanish rice from the dollar store. The first ingredient was Monosodiumglutimate (MSG). It tasted terrible, so I didn't eat much. That night the same thing happened. Fire legs. So everyone with RLS should eliminate these chemicals. Also, I find some magnesium at bedtime is really helpful. And CBD lotion helps, too.
It's always helpful to figure out what your triggers are and avoid them x
Well done for mentioning augmentation! Are you in the UK? I'm asking because there's some great resources in the UK. Although the NICE guidelines do need changing in order to avoid the dreaded augmentation for patients. Of course NICE are dragging their heals (no pun intended), similar to how they did with ME/CFS here in the UK!
Thanks! I don't know why augmentation isn't talked about more.
I'm in Australia, though I think some of the resources I used to research this video were from the UK. The NICE guidelines for mecfs are certainly better and further ahead than the ones for Australia!
@@chronicjillness332 That's very sad to read. Here we treat ME/CFS with CBT and you can't access anything beyond this unless you pay privately for treatment. It's shocking treatment. Even if you pay privately, most of the Drs that would treat are a bit 'woo' in my opinion. That and the fact that they're still stifled by regulations that restrict their ability to prescribe treatment that has the potential to help.
Mmmm, yes augmentation is a taboo subject - all around. It's nothing but harmful to patients.
Thanks for making your vids - I'm following along now! :) Take good care of yourself.
@@deel2435 I'm glad to have you along! I should have a new video out in the next day!
Unfortunately Australia is still treating ME/CFS with GED and CBT. I think they have recently changed the recommendations but most doctors continue to prescribe these outdated and dangerous therapies. There's really not much help or support out there for chronic illness treatment here, and it sounds like it's similar in the UK :(
@@chronicjillness332 Graded Exercise? Oh wow. Many Drs do the same here, despite a change in the guidelines. You're too right, it's dangerous.
I had a great session today with a Dr (something minor) who said more-or-less: 'Most Drs aren't smart at all, they're really dumb and only think about things inside their small wheelhouse. They're memory-banks and they regurgitate info. A good Dr will think about how they can help you even if that means referring you to someone else. But always making sure that it's what you the patients needs AND wants'.
I have to say I was left speechless.
There's a few good eggs out there, I hope you find your way to them and they're able to help you. In the mean time, keep pacing as they say! 🐌🐌🐌
Thank you. Great information. Have you put your meds video out yet ? I’m on meds for last 2 years but put up so much weight.
Thanks for your feedback! I've put out two additional videos on medications for RLS. I'm going to put out a third video talking about my personal experience with meds. I was on Lyrica for a while and it made me put on so much weight! So I know how you feel x
Thank you so much for sharing your knowledge for this horrible condition. I was diagnosed with rls but I also experience debilitating leg and feet cramps. I’ve had it basically most of my adult life and the worst thing as you said is the sleep deprivation. My doctor prescribed repinol which made things worse and I recently asked him to give me a muscle relaxant instead for emergency use if need be. I don’t want to take any drugs that I would build a tolerance to. I’m going to try taking the iron supplement. Does anyone experience leg and feet cramps as well as the twitching? I also noticed that when I’m sick or have a cold and stress increases the intensity. Any comments appreciated. Thanks
I'm sorry to hear it's been so hard for you. Sleep deprivation is the worst. Has your doctor checked your mineral levels? Sometimes cramps can be worse when you're low on electrolytes, in which case an electrolyte supplement could help.
I go into more detail about electrolytes in my video on hydration, which you can find on my channel. It's more in relation to orthostatic issues than muscle cramps, but if you check the comments I linked to a bunch of electrolyte blends that might be useful.
I'm also planning to make a series of videos on sleep and treating insomnia. Hopefully some of my tips will help you there x
I would be careful about starting Iron. After a certain age, my dr said Iron can be toxic. Wait and talk to your dr about Iron. Good luck.
Magnesium helps me! Taken in an acidic base helps absorption into the body.. Love your paint roller idea! Thank you I will get one with a long handle for self application; also the get up on legs right away at the onset is something I will try as I usually try to bare it for as long as possible, get up ,cant help but stretch and take cal mag
Good information, thank you! 😊
I've had this for years and after ditching pregabalin bcos it caused swelling in face hands and legs... I'm left with taking a cocodamol every night .. It relaxes my legs just enough to get some sleep.. If I try not taking anything and the pain sets in then no matter what I take, nothing helps.. Interestingly I'm slightly low in b12 and iron so will start supplementing to see if that helps... Even tried the old soap in the bed hack but no luck!
Great job!
I've tried almost everything. The pramipexole no longer helps. It used to be just my left ankle/calf, started when I was about 11. But now I get it in both legs, hips and sometimes my arms. I'm about to ask my Dr for medical marijuana, but I'm pretty certain here in Ireland it won't be prescribed. Tried tonic water, exercise, massage, magnesium, magnesium oil, hot baths, cold plunge, saunas, infrared light, and nothing works. I'm 60 now and it's so bad that it often goes on till 5am. It's soul destroying. 😢
That's absolutely awful :( It sounds like your RLS has been augmented by the pramipexole, in which case your doctor should have switched you to a different med by now.
I think my latest video, the one on medications for restless legs syndrome, would be helpful for you. It explains why staying on some medications can make RLS worse, and what your other options are. I hope you get some relief soon x
Thanks for the video. Marijuana is legal where I live in the states. I’ll have to try out the topical oil.
Yeah, it's great stuff if you can get your hands on it. Great for topical pain relief too. If you've got sore muscles or joints, rubbing some on is surprisingly effective. (At least, the stuff I've got works well, but the effectiveness probably depends on the concentration of active ingredients in the particular product you use.)
I was using magnesium gel on my calves at night before going to bed. My doctor recommended I try Arnica gel instead. I just started it so I can't tell if it's going to do the trick or not but so far it's working! I'm sleeping better and my legs feel like I'm wearing compression stockings.
Arnica gel... I've heard good things about arnica in general. I'll have to try it for myself! Glad it's helping you x
Low dose naltrexone completely banishes RLS, afaik, Im the first to find this out. Works right away, and if you stop, RLS will generally return in about a week, The good news is that LDN significantly improves most any chronic inflammatory or pain condition so theres no reason to stop.
The bad news is that few doctors know about this and most wont prescribe it.
Whats worse, doctors that do often dont prescribe it properly and have no personal experience with it.
That's interesting! I knew LDN was good at treating fatigue and pain in some MECFS patients, but I didn't know it also worked on RLS.
And yes, it's such a shame that some doctors refuse to consider it as an option for their patients. Hopefully that attitude will change.
LD Naltrexone doesn't relieve me of RLS. Never has. I have Sinemet medication, magnesium glyecinate, magnesium butter, and an essential oils mixture which help somewhat. Nothing has gotten rid of this curse. I have FM/CFS and several other chronic illnesses.
One of the worst things about the medicines is after time you cannot sleep if you don’t take your meds that night. I also use medical Marijuana (legal in Illinois), Indica, with better relief than my meds.
Glad to hear the medical marijuana helps you. Yeah, it sucks to be dependent on your medications, but I suppose it's better than battling the illness itself.
Thank you.
Try Nordic Walking Poles. I have used them with relief for about an hour.
Interesting... how do you use them?
I have always had it. V
Caused me so much suffering over the years i would go as far to say that the lack of sleep was a direct cause of bad decisions and costing me a better education better jobs .even relationshops . Self medicating when at witts end . Now just turning 60 its became a monster ive been to so many drs tried the medications.the couple that actually worked only lasted short time before turning on me making them unbearable at new levels lasting 3 or 4 days with out any relief to the point i was ready to end it but i couldnt think long enough to carry out anything im suffering now no sleep between 11pm untill 9 am usally sleep after 9am but sometimes if i dont get up and get busy doing something i atill will lay there tryi g to fall askeep . My life was robbed the drs. Just never have helped
That sounds awful!! I'm so sorry to hear how hard it's been for you. Yeah, RLS is no joke. It can take a huge toll on your life. Have your doctors talked about trying opioids? They are now the recommended choice for augmented and treatment-resistant RLS. I talk about them more in my follow-up videos on RLS medications, if you're interested.
Can you talk more deep about the symptoms that you experience with RLS ? Thanks
Thanks for this video, Jill. When is the b test time to do the massage? Before going to bed, or after symptoms start, or???
I can usually feel when they are going to play up. The restless feeling starts out really faintly, and I try to get up straight away to stop it progressing further, then I make sure to use the roller right before lying down in bed, as a preventative measure.
If the restlessness has already set in, I find massage really soothes it. Massage will relieve it for a little while, but it will usually come back, so I try to do the massage last thing before I turn the lights out. That way I give myself the longest window of time to fall asleep before the restless feeling builds up again.
As soon as I turn the lights out, I use my sleep hack techniques to get to sleep as soon as possible. I just released a video about them last week, if you are interested x
I have had Rls For a long time with fibro. At the beginning of the year symptoms started moving up my body. Now i have the same spastic movements in my upper abdomen.
Do you have any insight into this?
@@IreneArndt if your RLS is spreading and getting worse, it could be a sign of augmentation (if you're on a dopamine agonist medication) or it could be a sign of a worsening iron deficiency. Best to talk to your doctor. I explain more about these things in my two follow-up videos on RLS, if you're interested. I hope you find some relief x
Taking Ripinirole
I'm 71 and have had RLS since child
Said to be just a fidgety kid when tired
Dad has as well. His cure was walking bare feet on cold concrete. I found listening to ENYA "watermark" is like someone's dog. Signal response. Magnesium useless.Sifrol helps but like you found it addictive and augmentation issue. Limit to 2 nights a week. Use to find sexual orgasm helps but for prostate cancer surgery now impossible
Luv idea of paint roĺler. Ive used a vibrator massager helpful at times. Heavy blanket or any blanket horrible as i must cool down my legs before sleep is possible. Writing this at 5am as yet another night impossible to get any worthy sleep. Jumpy legs thrown bed sheets all over the place yet again. Sheets wear out quickly due to feet kicking excessively in my rare sleep. Cant sleep same bed as my partner anymore
That sounds awful. I hope some of my suggestions can help. The paint roller really is soothing, especially if you can get your partner to do it, since they can reach the backs of your legs and also apply more pressure. (Doing it myself, I find it harder to get the right angle and pressure.)
I'll have a video about medications coming out soon x
Has anyone found Epsom salt foot baths helpful? I've tried but not sure it had any effect.
If you find that topical magnesium helps, a footbath with magnesium could work, provided the magnesium content is high enough. Though you might find it more effective if applied directly to the offending muscles. Perhaps splash some of the Mg water onto your calves and thighs and rub it in? I did read that some people find cool or warm water soothing for their RLS. I think you've just got to experiment and find what works best for you x
I tried it. I couldn’t sleep that night. It made it worse 😵💫
@@dianamuro4528 I'm sorry you had to go through this. Magnesium doesn't work for everyone, especially those whose RLS is severe. Topical application of Magnesium oil to the affected muscles will be much more potent than putting it in your bath, but it still isn't always enough. For acute relief, doing squats can help. As many as you're able to do.
My rls getting worse if I eat late I wake up in the middle of the night need to walk
Good tip. Yes, I've heard that eating late at night causes blood sugar changes that can disrupt sleep. I try not to eat very much late at night.
I am very interesting !
I need the medication video. Please put out the medication video.
I'm working on it as we speak! Hoping to get it out in the next few weeks x
I had this from 18 to 30 but my fybromyalgia CFS has changed over time for me it's related to the add Asperger's
Maybe it's the ldn what's helped this but it hasn't helped muscle pain
Thank you for the video . My RLS kicks in in the middle of the night while I’m sleeping. Any idea why?
Hmmm I'm not sure. I mean, as I mentioned in the video, RLS is related to circadian rhythms and is always worse at night, but I don't know why for some people it's worse in the early evening, and for others in the middle of the night. I hope you get some relief x
What kind of doctor can help?
A neurologist is probably best, though a pain specialist might also be knowledgeable about the condition.
Hi I have severe RLS . Have experienced augmentation and so the doctors increase dosage . My symptoms are so bad if I cut down on meds I am up the whole night . I have day time symptoms as well so I use the extended release medication . Very anxious about where it all is going to lead to . Long distance travelling on a plane or by car is horrible . I am in my seat on the plane only mealtimes . On my last trip I medicated myself so that I was knocked out . Would like to know about your medication experience
That sounds so awful 😢
Are any of the other treatments and things I mentioned options for you? Perhaps you could ask your doctors about accessing them? Psychiatric hospitals can provide TMS, for instance. Or is medical marijuana an option?
Where there is known augmentation occurring, what I read recommends switching to a different sort of RLS med, cycling through the different families of meds to prevent tolerance or augmentation. Have you told your doctors your concerns? Doctors really should take the problem of augmentation more seriously.
Oh man, long plane trips are the worst! I was on a 14 hour flight a few years ago, and my RLS was torture! Taking sleepy meds to knock yourself out is the way to go!
I will make a follow up video about meds. I hope you find some relief soon x
I have had A severe case of RLS for 15 years of my 74 years. I was given Ropinirole for years which worked great until I started to suffer augmentation. I was up to 5 pills a day with no relief. I joined the RLS Foundation where I learned about augmentation and new drugs instead of Ropinirole. They are now not using Ropinirole like drugs to treat RLS because of augmentation. They now use gabapentin and opioids. I could not tolerate the Gabapentin at all and got no relief. I started to take a combination of two drugs which have helped me a lot. I take one 1mg Ropinirole at 7pm and two 50 mg Tramadol (opioid) one hour later. This reliefs most of my RLS symptoms at night. The only complication I have is when I eat too late at night and eat too much. This causes the meds not to get absorbed as quickly and I am up all night. It works for me. The one Ropinirole that I take at 7 pm will actually bring on the RLS symptoms for about 1 hour then it goes away. What a terrible disease.
Magnesium Glycinate and tonic water
Oooh, tonic water, I'll have to look into that!
🙏💜
Is this like “growing pains” in the legs for children at night?????
Hmmm... I'm not sure. I don't know a lot about growing pains to be honest. Sorry I can't be of more help x
Would like the oil name pea or psa info you mention full name
Unfortunately, I don't know. It was an independent supplier who is now no longer in business. But if you look for a topical CBD product, you should be able to find something. I'm also hesitant to recommend names because cannabis products are illegal in some places and I don't want to get myself or anyone else in trouble. It was recently legalised for medical use in Australia, but I don't know enough about the technicalities to safely give recommendations.
Soaking my feet in cold water helps.
I’m finding Infared heat helps alot
How much do you take of Pea? Thanks
400mg, 3 times per day for the first ~3 months. After that, you can switch to the maintenance dose of 400mg twice per day x
What meds are you on
I'll be putting a video out soon about medications for RLS, including what I'm on x
kratom works in a about 15 minutes, completely relaxed legs
Hmmm, I had never heard of kratom until your comment. At a glance, it may well help, but it has other dangers associated with it and is illegal in many countries, so using it for RLS is risky. Still, it would be good to see some clinical trials to find out if it's an effective and safe treatment for RLS or other conditions.
Medical Medium books.
cause; microwaves
please don’t just blurt something out unless you’re willing to support your blurt with medical support, microwave?!?….and so why is rls primarily a female condition?
Sleep with a bar of soap.
Do you have RLS and did the bar of soap work for you? I just told my IHSS client about the soap yesterday. She planned on sleeping with a natural bar made from oatmeal and almonds. I hope it worked.
@@healthyhomesteadingadventu1149 yes, I do have it. And I just put a bar of regular soap in my bed close to my legs. So far, it has worked for me. Sometimes I will put a couple of bars in my bed in case one gets lost in the covers or gets kicked to the floor.
cured mine, and multiple people and family members I know. Just a cheap bar of soap under the fitted sheet at the end of the bed. Worked for someone I know that very night, took me a couple of nights.
She didn't try it thinking it was witchcraft or something like that. I again, encouraged her to try it.
@@healthyhomesteadingadventu1149 that made me giggle lol. Thanks for the reply!