Going to bed, really.

Well it's 4:20 AM and my restless legs usually let up around 5 AM so will take my warm shower and get some sleep. Goodnight.

[Sunshine458]

This is actually a PATHETIC SHAME that so many of us live with such a HORRIBLE CONDITION in 2018 and we are basically all HELPLESS FOR A SOLUTION!!! I am 68 years OLD and I have suffered severely with RLS as long as I can remember!! I have tried every Drug, Magnet, Bath, Exercise, Vitamins, EVERYTHING I HEAR THAT COULD POSSIBLY HELP!!! I am completely MISERABLE AND WORN OUT WITH MY LIFE WITH RLS!!! I find comfort on this site but at the same time when I read about how many of us are living this same lifestyle it discourages me to even think that I might live another 20 years...I am so fed up with jerking and dreading to go to bed tonight only to get up and down all night until I can't take it anymore!! I can only speak for myself but "if something doesn't help me soon I don't want to think of living this life any longer" ... I am far from looking for sympathy I am stating a fact and I feel total desperation ... Quality of life is ZERO if you have to suffer every day with this horrible RLS. I don't mean to be such a "downer" but if I could find ANYTHING to help me I would try it!! Thanks if you have read this far for putting up with my RANT!!!

[involuntarydancer in reply to Sunshine458]

HI Sunshine,

I second everything you say. The condition itself is bad enough but having to live with the ignorance of others, particularly in the medical profession, makes it much worse. I know you had problems with your GP.

Are you still on requip? If you are still on requip, I would say that that is probably making life seem much worse for you. I hope you manage to find some relief. There are in fact various options always available. Sometimes it is a question of tweaking the combination of drugs you take.

Also make sure your iron levels are high. Have you had your serum ferritin levels checked by your GP?

[Sunshine458 in reply to involuntarydancer]

I am taking Slow FE Iron Pills and Magnesium Malate (I have IBS so I have problems with tolerating Magnesium I have tried several kinds??). I am taking 0.5mg of Requip (unlike what my GP wants me to take 2mg 3x a day). I take 1mg of Klonopin in the evening (generic of both). I am sleeping on a magnetic mattress pad, I am taking every kind of vitamin I have ever heard might help (all the B's etc etc). I feel like a total hypochondriac and I choose to be pretty much a loner because I have to accept that I just need to sleep when I can and travel is not an option because I don't know when RLS is going to attack!! I appreciate every one of you here more than you will ever know.

[involuntarydancer in reply to Sunshine458]

Congrats on resisting your GP recommendation regarding requip. 6 mg would have been a VERY high dose. Almost negligently so. Eventually you might consider discontinuing it altogether as it might be causing your symptoms to be worse than they need to be. In the meantime it does sound like you are keeping a very open mind. I hope you get some peace from the legs.

Like you, I am incredibly appreciative of the generous advice, uncritical support and affirmation available on this site.

[Sunshine458 in reply to involuntarydancer]

I would love to go off the Requip but I can't seem to find anything to replace it that works...I have a tendency to react to drugs the opposite to "normal people"!! What makes people sleep makes me WILD!!!lol

[involuntarydancer in reply to Sunshine458]

Lol. I struggle to sleep on most of the rls meds also. It's such a difficult condition to manage.

[LotteM in reply to involuntarydancer]

Same here! When my legs are quiet my mind is racing. 😏

[Sunshine458 in reply to Sunshine458]

I remember reading something a long time ago that it's better to be on a low dosage of Requip and just keep it in your system a little bit than to take higher mg...that is what I am trying to do now with the 0.5mg...if anyone else has input on this idea please share it with me!! Thanks for anything you can think of to tell me to try next!!!

[Hidden in reply to Sunshine458]

Hi Sunshine 458. I like your suggestion about keeping the Requip dose low. You may be onto a better way to deal with augmentation. For now I avoid as many meds as possible. This is my issue and I feel the same about cardiac meds. I just don't like taking meds though often they are very necessary and helpful. So I'll keep your thoughts in mind about low dose.I do know I'm not sureI would have made it through the Flu in the hospital without all the meds necessary for me to get better.

[Noddedoffagain in reply to Sunshine458]

Hello Sunshine 458

You have put into words exactly how I feel. When I try to explain what I am going through to my friends they usually retort that they sometimes get 'twinges' in their legs believing that this is what I get. I feel as if I shouldn't be depressed or down & that am just making a fuss about nothing. This site has been a lifesaver for me as we can share our darkest thoughts with others who truly understand this dreadful syndrome and give incredible advice and support. Rant on - I'm listening !!

[involuntarydancer in reply to Noddedoffagain]

Yes - the other thing I find friends doing is telling me about how they got to grips with their insomnia - in tones that seem to suggest I am willfully failing to take the simple steps they suggest which would alleviate all my problems. I now avoid discussing my rls with friends and am stronger about suiting myself when it comes to social events - I go if I feel able for them and I leave when I start to feel too tired.

[Sunshine458 in reply to Noddedoffagain]

I know that people who have never suffered from RLS do not have any idea how we feel...I feel like a total hypochondriac to even try to explain it to anyone that doesn't have it!! I have come to the point that I don't care if I can't sleep anymore ... If I could just stop the horrible jerking and could read a book, watch TV or just sit still and not feel like I am going completely crazy I could tolerate it!!

[Noddedoffagain in reply to Sunshine458]

Like you I have tried many diversionary tactics like TV, & books etc but the only activity that allows me to sit down is knitting. I have cleaned my kitchen cupboards in the middle of the night and during the summer I am often gardening at 3- 4-00am. RLS is a living nightmare. It's a comfort to me that I now know that I am not alone in my suffering.

[Hidden in reply to Noddedoffagain]

Hi Noddedoffagain Like you I have tried many diversionary activities to get through the long nights where the combination of sleepless nights andrestless leg pain dominate our thoughts and activities. You say knitting helps the time pass for you. For me it is reading, sharing, and knowing others are also having the same issues help me. We are all different but from what I've learned is that our commondenominator is finding the distraction that speeds up our long nights. For myself, I've realized another thing I must work on-and I admit it is hard and I am learning how to do it VERY slowly. 1-2 steps forward, 3-4 steps backward. Here it is. I have to learn to let go of all my resentment about having the structure of my daysand nights changed. I will never be able to jump in bed, curl up and go to sleep easily again, wake up comfortable when I'm ready, have a lie in and get up when I'm ready. This makes me resentful (and probably makes my rls worse, I don't know). Someone gave me a little bracelet that says "It is what it is". A common saying but it helps me know that my health is now 'what it is'. I've had to face the fact that my health now rules my life in ways that it never had before . And my routines have to accommodate them. This past week when I was hospitalized, felt like S--- I had a lot of time to think. I'm going to try to let go of worrying so much about being in control of my health-it's out of my hands. The choices about my health are still mine to make-along with my docs, but NOT the outcomes. So my big decision this week is to stop fighting being awake most nights dealing with rls. I'm in abetter position than many of you because I'm retired and my time is my own. What I do is if I can't sleep I get up, get on my computer and spend my time in this website between my two communities: RLS and a-fib. I plan naps during the day in order to lessen sleep deprivation as much as possible. What helps me is not my specific activity but accepting what, for me, is a new sleeping schedule and different daily schedule. It's beginning to work. It's a slow process and a deep learning curve for me. But this new insight is actually taking away some of my anxieties. Would like to hear how any of you have found changing your thinking has or has not helped. Take care. irina1975

[Sunshine458 in reply to Hidden]

I agree with you 250% and I was thinking the EXACT SAME THING THAT YOU JUST SAID TODAY!! I am retired also (thank God) so I have to just relax and stop fretting over a "normal bedtime"!! Sleep whenever I can and just be awake and not worry what time it is or if it's daylight or dark!! If I am awake all night I am going to stop trying to go to sleep!! I am going to get out of bed and do something constructive so that when I am sleepy at 6-7-8am...I won't feel so guilty that "I am sleeping when I should be getting something done!! I have worked my entire life and a big problem I have is that "I really don't know how to relax and not worry about SOMETHING"!! I know that stress and worry cannot be helpful for RLS!! I like what you said "IT IS WHAT IT IS"!!! Thanks for sharing and I am sure we will be sharing, comparing and caring for as long as we are here!! We at least all have "each other"!!!

[Hidden in reply to Sunshine458]

It helps me to know someone else thinks likeme. After all, no baby ever arrived in this world with a daily timetable printed on its little bottom!!! Like you I worked hard for 40 years and, if now,I'm up being productive at night and sleeping from 6am til ? so be it. We've earned the right to do things OUR way! Thanks sunshine

[Sunshine458 in reply to Hidden]

"IT IS WHAT IT IS IRINIA"!!!

[Hidden in reply to Sunshine458]

It's 3:30am-about one more hour then I will have my hot shower/take morning meds and getvready for 6AM bedtime. It's strange how the arrival of dawn seems to calm my legs.

[LotteM in reply to Hidden]

Wise and helpful words, irina.

[Hidden in reply to LotteM]

Thanks, Lotte

[Hooc in reply to Hidden]

I feel for you it must be hell. I can only add one thing which you may think is absolutely mad but are you physically fit?

If so try walking. I don't mean a walk around the block but long distance get a rucksack make up some sandwiches and take plenty of water plan your route and walk all day I mean all day do this regularly and often and see if you feel tone better good luck

[Hidden in reply to Hooc]

Hi Hooc. Those are wise words about walking. Here where I live(Atlanta Georgia-US) unfortunately is not a very safe place for older seniors to walk safely anymore) even in nice areas.I live in a very nice section-NW Atlanta near Marietta. But there is a lot of city crime-even people having their phones snatched when walking/running during the day. Lately, people have had their cars hijacked in shopping mall parking lots even with babies in the back carseat. I don't even listen to the local news. It just causes anxiety. Also I use a cane and sometimes a walker. So I have a treadmill in my bedroom. I don't really like big American cities-people carry guns and the new administration has really divided the country. Sad changes. Police are not very nice here now-often seem to feel their power. Many stories about people being shot before facts are clear and the law deciding in favor of the police. My sister was married to a Scotsman in the 90's and lived in a village in Cumbria-Haverigg/Millom. I loved visiting her and would love to live in a place /like that.. Didn't mean to get off on a tangent. Back to walking. I could be more physically fit and plan to be. I need to have knee replacements and plan to. However, recently had a procedure to enable me to get off anticoagulants. It went well, am thrilled, and am weaning off coumadin. My docs and I have agreed the whole knee surgery adventure should wait until I am off the anticoagulants as surgery is much easier without them. I was an operating room nurse and entirely agree with this plan so for now walking is sometimes uncomfortable. I do it but hope to be much more mobile soon. Actually my favorite exercise has always been swimming and can do that easily as my insurance gives me free membership to some nice gyms and indoor pools. I grew up in Miami Beach (south Fla)and love to be in the water. I would love to live in a smaller town but even there people have to live with a lot of crime. I'm painting a dismal picture of life over here. We've had so many freedoms in this country especially with people now allowed to carry guns in most places. Too much freedom without the responsibility that should go along with it. Boy, I got on a tear-didn't mean to. When I was younger, travelled a lot outside the US and even lived overseas for a while-loved it. If medicare would extend their coverage to seniors living outside the states I would be gone in a shot. But that's life. I guess I sound 'unpatriotic'. Thanks for listening to my 'dissertation'. irina1975

[jan_ET in reply to Sunshine458]

you werent ranting i feel exactly the same there is mo quality of life - i get relief from valium and tramadol - Jan

[Sunshine458 in reply to jan_ET]

What mg of Valium and Tramadol are you on Jan? I have actually been trying my best to get off Requip since THURSDAY!! It is 1:45am Monday!! I have only taken 2 ropinirole pills (generic Requip) 0.5mg each since Friday at 5pm!! I feel like one of the drug addicts that you see on TV rocking back and forth sweating!! I have to get through this horrible augmentation or whatever it's called "HELL"!!! I have found the "Tart Cherry Juice" (Walmart) to be helpful amazing as it sounds!! I am going to give it my best shot and hope and pray that I can get off the Requip!! I have been on it forever and suffered with RLS as long as I can remember and I am 68 years old!! I don't care if I am awake but the jerking and the nervousness is about to kill me!!! Thanks for all your encouragement and I will keep posting to let you know if I am alive!!! ❤️❤️❤️

[jan_ET in reply to Sunshine458]

1or 2 x 5mg valium and 1x 50mg tramadol or 2 x tramadol if unbearable and i also take sifrol x 3 x .250mg - you need a n understanding gp who will work with you - ide be dead without mine - if i wake in middle of night i take half a valium and try to stay quiet and take tabs same time each night - i have learned that RLS doesnt like change that includes sicness like fli or anything - particularly doesnt like change in meds - hope that helps a bit - take care - Jan

[jan_ET in reply to jan_ET]

oh ps ive just had my ferritin iron levels checked and last time was 70 which is ok nut now 26 and through this forum ive learned for us with RLS it has to be 100 so on weekend im having an iron infusion x first time - thank god for this forum and especialky dancing legs she has helped me themost xx

[involuntarydancer in reply to jan_ET]

That's quite a reduction, Jan. How long was it between getting the 70 result and now (26)? But exciting that you are getting a transfusion. Some people on here have had a really great outcome when they got iv iron. Their symptoms have improved a lot. I hope that happens for you.

[Hidden in reply to involuntarydancer]

I wish I could get an iron transfusion. My GP doesn't seem to want to get involved in this. Am seeing a new nurse practioner in my sleep doctor's practice in Feb. And plan to really go to bat for myself. My current ferritin is 48 which I know is terrible for rls.Meanwhile for the last 2 months I've been eating calves liver and onion every Monday night.I hate liver but I just look at it as medicine and put a ton of onions on it. Wanted to get this resolved but other med problems have taken priority. I had a minor cardiac procedure for afib designed to get me off blood thinners. My surgeon said as soon as I was healed and stable after being off all blood thinners (takes a few months) I could start ferrous bisglycinate. I've read good things about it on this site and am anxious to give it a try.

[jan_ET in reply to involuntarydancer]

it was one year dancing legs

[involuntarydancer in reply to jan_ET]

One year is quite fast for it to drop so low. I saw a webinar about iron and rls (I think it was Dr. Buchfuhrer) which said that in rls patients iron leaches out much more quickly than in the general public -- I think that was one of the reasons they started to look at the iron connection. That maybe the reason your legs are so bad. I hope the infusion works well for you.

[Hidden in reply to jan_ET]

Hi jan. Just a question. My PCP/GP thinks if any lab work is within normal limits it is non-problematic and she's found the Holy Grail. So I'm seeing my sleep doc friday. I have access to all my labwork online and preparing for Friday's visit looked up some info. Long story short: Hemoglobin and Hematocrit are fine and have been all year. Last Oct my iron level was 100-normal 45-160;TIBC(total iron binding was392-normal 250-450 and iron saturation was26%-normal 11-50%. Do any of these tests have any bearing in rls or is it the Ferritin levels that cause the problems.? Happy to hear from anyone with thoughts/info. Couldn't find much on the net. I'm bringing this info to my Fri appt (sleep). I've stopped mentioning labs that fall within the normal range to my GP. I just get irritated. I'd like to leave her out of the mix but one thing medicare recently instituted (last year or maybe this year) is that they pay extra monthly money to our PCP (Primary Care Physician (GP) for coordinating care between all the specialists. Doesn't seem to be working out in my opinion but we all have to work within our systems! I'm not happy with my PCP situation but haven't figured out how to handle it yet.I guess it's a case of everyone guarding their little piece of the pie. irina1975

[jan_ET in reply to Hidden]

interesting irini i have sleep apnoea and use a mask and cpap machine i have to get a new sleep study done and then am being referred to a sleep clinic all seems linked but im augmenting on amitryptoline and or sifrol but things are moving now due to the infirmation i sm getting from this forum ive just had first iron infusion but im told wont help while augmenting but at least my anaemia will be sorted - Jan

[jan_ET in reply to involuntarydancer]

thanks so much you are si cRing and supportive you have no idea how much you have helped me - thanks Jan

[jan_ET in reply to jan_ET]

i meant so caring - god ive got to find spell check on this phone lol

[involuntarydancer in reply to Sunshine458]

Wow, sunshine, you don't do things by halves. Good luck with reducing/eliminating the requip. Take it easy - I believe it isn't good to come off it cold turkey but at the moment I can't remember what the lowest dose of requip is. It could be .5mg in which case you are doing it just right. You are absolutely right the jerking and horrible crawly sensation are the pits. Things usually improve A LOT once you get the requip out of your system.

[Hidden in reply to Sunshine458]

I agree and it makes me angry. This is by far worse than my other major problem I talk about on this forum-atrial fibrillation. Chronic pain is wearing me down inaway I can't describe. And right now I don't feel docs that can help are listening. Most of mine are terrific . My GP is good in many ways but she's young and healthy and I just don't think she gets it. I will see my sleep doctors nurse practitioner in a couple of weeks. But he is new and an unknown quantity. Also my sleep doctor is a Pulmonoligist. Maybe I should turn all thisover to my neurologist. Sorry for typos. Right now too frustrated and hrting to edit. I'm afraid to say much as I live inan independent senior livinv apt. The one thing I'd rather die than have to do is go to assisted living over here. Most care in theseplaces is abysmal. I won't go into details. But in my opinion assisted living and nursing homes are mostly awful in the US. There are many good caregivers but all you need is onecontrolling uncaring person assigned toyou for the night and it's the longest night of your life. I'm really upset right now thinking about thse options. Thanks for listening. I'm going to sit in my hot shower for a little while. Back later.

[jan_ET in reply to Hidden]

i feel exactly the same way as you am 67 and sick to death of all this and thinking of going into assisted care but afraid as well - they are not good in australia either - last night was the worst for me - had a very stressful day and did too much - i just have to pace myself and only do what i can and buggar anyone who doesnt understand - how are you today 😋 warm regards jan

[Hidden in reply to jan_ET]

I think my rls has recently moved to a new level.I'm doing well I have my moments but there are so many people in the world that are much worse off than me I try to remember this. Don't always succeed though. Sometimes I have little 'pity-parties' for myself. I believe as we get older most of us have chronic pain of some sort. I'm ok with mine most of the time but sometimes our pain crosses over to a level where it is difficult to focus on other than pain. When I see some docs in the near future I worry that our country's new stance on opiates is going to make things diffcult for me. We'll see.

[Hidden]

GM. Tart cherry juice-will give it a try. I really believe that rls and it;s attendant sx=which can be so different for us all-are very much based in nutritional deficiencies. Though no one seems to have connected all the dots on this, one. I read about many nutrients that help but it's hard to get them in our food in this day and age;mainlybecause-especially here (US) our food has been so 'messed with'; depleted soil, GMO'd to death processed, many nutrients removed with a few artifical things replaced.I picked up a jar of peanut butter one time that advertised proudly on the label-added omega 3. I read the ingredients label closely because I know peanut butter doesn't naturally contain omega 3 and what had been added was fish oil! Needless to say I didn't buy it-don't want fish oil in my peanut butter. I'm really ranting on how our food is adulturated and most people believe they are buying a healthy food. So will try the tart cherry juice. It may still have a nutrient that some big company forgot to mess with! (Hope they don't see this post!) It is a pet peeve of mine how tampered with food is in this country. I try to buy whole, real food but it gets harder everyday. Sorry for my soapbox but because processed, GMO food is such a moneymaker it's everywhere. I really believe Vit B complex, and other vit/minerals can help but you have to look long and hard to find the good ones. I'm always on the lookout for products from reputable companies. Open to suggestions. I'm really not very trusting of most marketing info. I do have a good book called DRUG MUGGERS which gives in depth info on what current prescribed meds can deplete the body of natural vit/minerals incl which ones. It is an eyeopener. Another reason I don't like to take RX meds unless absolutly necessary. Was recently hospitalized for a small heart procedure and then the flu. The nurse just brought in some potassium tabs saying 'your potassium is a little low so protocol says to take these pills. (Wasn't eating well as didn't feel well.) I refused the pills, ordered as much whole fruit on my tray as I was allowed and ate my potassium. Then when I got home loaded up on kiwi fruit (higher in potassium than bananas btw) and did things my way. I don't think I'm everyone's favorite patient.(LOL) Did tell my doc and he said fine! So do things your way when you feel you're right. Just keep your docs informed. Sorry for the length here.Have lots of 'food soapboxes.Take care. Going later to Walmart and read the cherry juice label.

[Sunshine458]

Ok...here is my plan for today!! I didn't get to sleep until 6am this morning...I have come to the conclusion that the Requip is not working at all for me at this time...I have tried 100mg of Tramadol that I had a prescription for from a long time ago in my collection of pills that I have tried over time. Tramadol seemed to make me jerk more?? Plan B for today...I have Klonopin (1mg) ... I am going to try to take one Klonopin every 8-10 hours....no Requip at all today and see what happens. I am taking every vitamin etc that I have read about or heard about too!! I am drinking water as much as I can and the "Tart Cherry Juice" seems to be helping some too. I am going to sleep whenever I can for the time being while I am struggling through this horrible augmentation!! Thank God I am retired!! ANY SUGGESTIONS OR ADVICE ANYONE CAN GIVE ME I AM OPEN TO TRY ANYTHING!!! Thanks to every one of you here!!!

[Hidden in reply to Sunshine458]

Sounds like your plan is well=thought out. What does the Klonopin help you with Is it difficult to get it prescribed in todays 'drug focusing climate,' Also what brand and dosages of Vit B comples are working best for you (and anyone? )This is the one supplement I'm having trouble finding the best. All suggestions welcome. And how did you finally convince your docs to give you IV iron. I haven't been able to have any of my docs take this ferritin level seriously. The lab window for 'normal is very wide at my hospital-something like from 20-over 100. My latest was in the 40's down from the 60's and no one seems to be listening re wanting it well over 100.I'm really frustrated over thisThanks for any info/help/ideas etc.

[Sunshine458 in reply to Hidden]

Irina, I am taking Slow FE Iron and my GP Doctor recommended this kind of iron supplement for me. I am also taking B12 2500mcg (quick dissolve pills), Super B-Complex, B6 100mg, vitamin D-3 2000IU, Calcium 600 mg, Vitamin C, Centrum Women 50+ and I am experimenting with Magnesiums because I get diarrhea from most of them. I have been on Requip for years in different mg...Klonopin for years same thing up and down ... I have been on Lyrica, Cymbalta, Tramadol, Valium (short term for withdrawals years ago) ... Etc etc etc the list goes on!! I have tried everything I know to do...I have been to doctors on the east coast and now I am on the west coast....I have seen neurologists, had MRI years ago on my back to see if that was the problem .... I have tried it ALL and I am at the end of your rope!! My quality of life is zero due to RLS and I am sick and tired of dealing with it daily!!! I feel like a real hypochondriac because anyone (including most doctors) have no idea what it is like to deal with!! I won't say that I am suicidal but I will say that I have no desire to continue to live like this ... It used to be mostly a night time thing but I am challenged with it pretty much 24/7 now. I can't plan to go on a trip by car let alone fly and I cannot even sit through a movie. If I do manage to get through the augmentation and get off Requip now ... What will I do NEXT????

[Hidden in reply to Sunshine458]

Sunshine. Thank you. Have to start taking some decent supplements wii re read tom am to be sure not to miss anythin. Drs here (US) don't givr supplements I believe they deserve. Will make a plan and shopping list ,Thei really believein the DA meds but I'm refusing to even consider them.

[jan_ET in reply to Sunshine458]

im the same

[jan_ET in reply to Hidden]

for god sake change doctors my gp works with me and i dont see any specialists - they nearly killed me and my gp begged me to stop trying new meds and new specialists - ive learned my Rls doesnt like change - take care but you need just one doc you trust

[Sunshine458 in reply to jan_ET]

have you found something that works for you??

[jan_ET in reply to Sunshine458]

only valium and tramadol

[Sunshine458 in reply to jan_ET]

How many mgs and do you just take them both at bedtime or during the day too?

[jan_ET in reply to Sunshine458]

1 or 2 x 5mgs valium and one tramadol 50mgs only at night and three sifrol but dont think sifrol is working think it has augmented

[Sunshine458 in reply to Sunshine458]

I only go to one dr. I just have moved across country during the years that I have battled RLS

[Hidden]

Thanks, I try the changes. Have been taking many hot showers.

[Hidden]

My goal is going to be to get some pain meds not necessarily for daily use but to have, like you, occasionally when I need a break to get my coping ability back. This is how I'm going to present it to my doc.

[Hidden]

That's my goal. I can get a lot of things done with chronic pain when it isn't too bad. I think learning to do this is part of getting old. Pain does make me grumpy from time to time though.

[Hidden in reply to Hidden]

PS There are quite a few residents in my senior living bldg that are much worse off than me. One lady comes to mind. She has A.L.S.; can't talk-has to write everything. She is always smiling, and kind. Wish I could be like that.

[nightdancer]

Also, too much exercise before bed will up your core temperature. Suggested to not exercise 3-4 hours before bed time, so your core is cooler. That is for sleep in general. Some people like heat for RLS, some like coolness. I cannot make it thru the night without my heating pads, and a lot of other people like heating pads. But I keep my room cold.

[Hidden in reply to nightdancer]

Hi Nightdancer. I agree with your advice. And especially taking potassium pills, Can be very dangerous. Was recently hospitalized for the flu.. The nurse came in and potassium was low normal and wanted me to take 40 mEq of Potassium saying it was hospital protocol. I refused. Just ate fruit and even more after discharged. A case of the 'flu people' not correlating care with cardiac problems. Discovered a fruit that has much more potassium and less sugar than bananas. KIWI fruit. Got my K back up without meds and just with food. I believe we take too many meds here (US). Burma (irina1975)PS my meds have started to kick in, legs feel better so I guess it's time to fix more food for the football fans here.

[nightdancer]

an ice compress on MY feet would set RLS off in 4 minutes. But some like heat, some like it cooler. Do not take potassium unless you have your level tested. Too much is not good, and too little is not good. IT can affect your heart.

[Kaarina Administrator]

Our preference to hot or cold temperatures in regards to our RLS varies greatly. What helps one person does not necessarily help another person at all.

[Hidden in reply to Kaarina]

You're right. I've always liked to sleep in a cool room. In fact too much heat wakes me up. I'd rather 'bundle' up and have the room cold. But when my legs hurt. it helps me to get up and sit in a hot shower chair with warm water over my knees and legs. Then I'm relaxed and can get some sleep. One thing I'm very grateful for is my electric bill is included in my rent and there is always plenty of hot water. Thank goodness for small things, huh!.I'm trying to stay off the DA's and will see my new sleep NP on Feb 9. Want to talk about iron infusion, pain meds,. Hope it goes well. I need a new lease on life re this rls. It's much harder for me to deal with than my other community-atrial fibrillation which is well-controlled. Thanks for listening. Music helps me but today everyone is wrapped up in the Superbowl game. I have never understood or liked football.Very unpatriotic of me!LOL I just keep fixing snacks and food all day. The yelling and screaming that everyone directs to the tv is working my last nerve. LOL. I just took a xanax and 1/2 of a pain pill I had left over from gallbladder surg last year. Beginning to feel better.I know there are many people much worse off than me. I try to remember that. Doesn't always help tho. Thanks for listening, Kaarina. Burma (irina1975)