Hi..I was pointed to this site from another forum that deals with RLS and am just saying a "hi" and trying to see if I can find some info and thus relief from my RLS..I suffered for a couple of years before learning I had RLS as I didn`t tell anybody as I couldn`t describe the feelings..it was only when I googled my symptoms that I realised I was suffering with RLS and although I guess in some ways I count myself "lucky" (cynical laugh here) as I do not suffer any pain,the version I have is well enough for me...tonight is the second night awake for me..usually I am awake until 4 or 5 am and drop off to sleep from exhaustion..sometimes for maybe 2 hours and other times for a good 5/ or 6 hours..I have so far been to the doctors and been given Quinine (back in January) but found they only made me feel very strange the next day,so stopped taking them and the last visit to the doc`s saw me leave with a print out of information regarding RLS..as if I needed telling about it..it seems that no one remedy works for everybody from what I have read but if anybody has found any type of helpful medication from their doctor I`d very much like to hear about it,please..well,that`s enough from me for now..I`m preparing for another long night..hope yours is a better night than mine.
Steve.
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To add to above..from my own experience of a couple of years with RLS I have noticed no correlations between anything..whenever I think I may have worked out some type of relief by doing or not doing a particular thing etc,(and perhaps have a day or two of relief) along comes the RLS back with a vengeance..at the moment I am talking with a specific doctor (not my GP) about the relationship between dopamine or lack of and RLS..I have been taking buprenorphine for some years and only when I reduced did the RLS start to make itself a problem .. I had never suffered with RLS prior to taking the buprenorphine..back last year when my RLS became extreme I noticed that if I took a particular dose of buprenorphine it seemed to smother my symptoms and likewise experienced the symptoms when taking a lesser dose..but I have reduced since then again and suffer every night until 4/5/6am or sometimes (as yesterday) no sleep at all and still suffering tonight..but I am going to see this particular doctor next week and will mention what I have experienced to him again as buprenorphine interferes with dopamine levels..I have also noticed from reading other info that people on any type of opiate or derivative prescribed for RLS also have symptoms smothered ( or alleviated) at a certain level of dosage..at present I am receiving no specific treatment for RLS but hope to in the very near future as I just can`t carry on like this with the extreme lack of sleep.
Hi Steve......I have been fighting this RLS,for a long time..I don't like to take pills.,But,I had to do something..I have a great Dr,and he understands,I don't like pills..I have used marijuana,in the past.but,it's not legal here....I take tramodol,a light,opiate,lowest amount available. They are 50 mg..They control my fibromyalgia,and my legs..I take a 2 mg.ropinerol,2 hrs,before bed,and a 1 mg xanex.I have some sleep disorders too..I usually drop off to sleep around 1am,to 2am,and sleep pretty well,for about 4 to 5 hrs..This is for me,the best I have ever been. with out the weed. I was so bad,at one point,I didn't want to live like that any more..I had no life, I was always tired,my house was a disaster,I was a mess....I refused to take pills,and I smoked some weed,to get relief..I told all this ,to my new Dr.who wanted to help me,but he said I couldn't smoke,because he had to drug test me,and he could get in serious trouble..So I took the medicine,and promised him I wouldn't smoke,as long as this stuff worked..I haven't smoked ,for several years now,and the meds ,are my saving grace...Some people say the Tramodol,isn't strong enough,I get along fine with it...I keep my doseage as low as possible,and only take the full amount,if I need to..The trick is to catch it,before it starts...If you sleep ok ,you don't need the xanex,and you shouldn't take it..But the Ropinerol,and the Tramodol,are the life savers..That's what helps me,you might try these...The Tramodol,doesn't seem to constipate me,and it works very well,for my fibromyalgia also. The ropinerol,tends to make me yawn,but I drop off to sleep,pretty well... I hope this helps you. Take care and good luck...Carol You can find me on facebook Carol Cripps..
Hi Carol...thanks for your reply and advice...I`m glad to hear you`ve found some kind of effective treatment and sounds as though your doctor is knowledgeable about RLS...my own doctors surgery is not very aware of the effects/causes etc but I`ll be going back this week and will hopefully get some progress with at least starting a treatment...I have managed to get some very light sleep tonight from around just after 3am until just before 7am...one thing I notice is that my sleep nowadays is full of very odd dreams too and I mostly don`t sleep for more than a few hours...still,I feel a little better than earlier and have had some relief...bye for now,Steve.
Well Steve, I have found my answer. I've had RLS for 40 years. Worse now from diabetes and vascodilators for heart failure. I've tried EVER, fix! DRS and myths.
Kratom can be researched online. It is legal, organic, used in regular African, Indian, etc cultures. Hundreds, probably thousands use this plant for rls which is a dopamine deficiency. It is used for moderate to severe depression (I am bipolar) . You buy this online or in head shops. I use Maeng da strain. This is sedative. This herb is non addictive!
I was on the last ditch method for ten years. Opiates. Oh yes, never ever had I experienced complete relief! . I never had to increase dosage. I had zero rls for the last ten years.
But when WA decided to only let Pain Management. Clinics, I was refused this med, this dr said RLS has nothing to do with opiates. Shocked, I educated her.
The next visit, I had morphine perscribed as usual for my bulging disc arthritic sciatic pain. I wasnt worried, AND morphine erases RLS. But on that same day, I left, filled script, and in a mixed bipolar state, brought on by her trying fentanyl on my back, I took my evening morphine and i THINK I dropped it in the garbage. I was fucked
OK, well, I'll call dr. After 4 days, in terrible withdraw, I was told they decided to discharge me. WHAAAT?? . I have never abused my meds in 12years. But new laws, ignorant drs, junkies ruining it for us, I had to withdraw from morphine and oxys. I COULD NOT BELIEVE IT!!!!
I will not succumb to any dr telling me she knows my body better than I.
My 2 sons had been on Kratom for 4 years. For pain, rls and severe anxiety and depression. I finally gave in, decided natural it would be.
I KNOW, I KNOW, you're thinking scam, mind over matter bull, hippie, etc.
Nope. I'm a liberal, a pastors daughter, a high IQ.
research "rls and kratom", also macuna works. I could go into all the scientific mumbo-jumbo, but that doesn't matter. You WANTED WHAT WORKS WITH NO SIDE EFFECTS.
you got it, go get it. Take 2 teaspoons, put in some Orange juice, then in fridge to melt it. Down it, Chase it with a little juice, Soda, etc. It's quite herbal tasting
Repeat every 4-6 hours during day if for painpa depression etc . Or just take 2-3 teaspoons at night. You'll want to hug me! LOL
mmmspesciosacom.com
Spread the word pleasep!!
Email address deleted in accordance with forum rules - Kaarina (volunteer)
I also use kratom for my RLS. It has given me back my life. The strain I like best is red leaf Borneo. I also advise letting the kratom sit in orange juice in the refrigerator for at least twenty minutes. The acid in the orange juice helps break it down.
Question, im wondering how often u take your dose and how much at one dose. I'm still in the withdrawal from opiates. So im doing it every four hours or so. But it's only day 5 now, so it's being used for rls, AND withdrawals
Hi Tonysnug...I`m just wondering how long you have has RLS...RLS is a symptom of opiate withdrawal and is unrelated to the "real" RLS and will subside in time,usually after the withdrawals have ceased..the "real" RLS is an entirely different cause...just asking and forgive me if this seems to assume something you already know...Steve.
I take, usually, 6-8 grams over a 24 hour period, usually in one gram at a time doses, although sometimes I do a double dose. I take a dose in the early afternoon, at dinner time, before bed, and then through the night as I wake up. I started out 2.5 years ago taking 4-6 grams, but have had to up it a little.
I've never taken any prescription meds for RLS at all, nor any opioids except for kratom. I think if you've taken other stuff you may have developed more of a tolerance and need more.
If I'm flying from New York to Honolulu (12 hour flight) to visit my daughter, I'll take two grams every hour or two to get through the flight, and then I'll have to gradually go back down to my regular doses. My RLS is always much worse on an airplane.
I buy a lot of those little plastic cups with lids, and make up the doses with orange juice, and keep a tray in my refrigerator. It works well for me, and even with keeping my doses so low I have good control--maybe an hour at the most of total break-through time a day. Often I have almost no break-through time. I know that if I took bigger doses I could eliminate any break-through time, but I'm afraid of developing a tolerance.
I've taken kratom every day for the last two plus years and the only side effect I get is a little constipation, which is easily managed with extra magnesium. I just have to drink plenty of water or I get dehydrated, and perhaps a headache.
Good luck to you. I have found kratom to be wonderful. Before I found it, I was lucky to get two or three hours sleep a night, could not sit down in the evening to read a book, and airplane trips were pure torture. And forget movies with my grandchildren. Now I do everything in perfect comfort.
Hi Steve, Been through the misery of rls for a year and hopefully coming out the other end. GP prescribed quinine. Made me nauseous and when I googled it found it is for muscle cramps and not rls and has been more or less banned in US. My rls used to be only occasional and quite mild but by suddenly stopping tramadol (prescribed for cracked ribs) I brought on a severe episode. In hindsight I should have reduced it gradually. I went back on tramadol slow release. First 100mg, then 50 at 4pm then reducing contents of capsule to 20mg. Last 2 night havent had any. Tramadol certainly gives relief but be careful using it. I believe it causes augmentation. If you are taking meds, I agree with Carol, you have to catch it before it starts. Other things that may have helped me were a liquid iron supplement taken at night on an empty stomach with 1/2 glass orange juice to help absorption. Tonic water. Mostly I relied on electric pads that blocked the nerve sensations. Once I blocked out the rls sensation for 15-30 mins it eased enough to let me sleep. I have rheumatroid arthritis in my ankles and toes and this wakens me with pain and burning. I find Piroxicam gel helps this. I dont think I'm cured but glad of the respite. Reminds me of a joke. Tackling rls is like wrestling with a gorilla. You stop when the gorilla says stop. Hope you find some relief soon. Dot
Steve I had tried Amatryptaline It made the symptoms melt away but I suffered with a bad reaction and had to stop taking it. 😕 I think you should try it. Can't hurt to ask.
Hi Duckish...thanks for the reply...one thing I have had experience with is Ametryptaline and for me it was a nightmare...I was given this while in hospital years ago and had some bad times...ie,going to toilet at night in a room 20m square and getting lost on the way back to my bed...I laugh now but at the time it caused all sorts of odd events for me...for me that`s a no go.
Might be worth mentioning the common triggers that can at least make matters worse: the dietary ones- caffeine, sugar, flour products which convert to sugar and fruit has lots of fructose; meds- if you are on any meds at all, google them for side effects (statins are notorious for RLS as a side effect) and over-the-counter cold and allergy meds (I can't remember what ingredient is in them that causes trouble); much has been said here about iron levels so search here for threads on that.
That being said and because you don't deal with the pain (I don't either) I'll mention what has helped me. It is definitely lower back issues with me. RLS was horrible when my back was its worst abt 10 years ago. Chiropractic has helped tremendously though I've stopped that. Now I use an inversion table and do lower back exercises. If RLS is keeping me awake, I'll get in the floor and do a couple of those exercises and generally I can get to sleep after that. Figure it's worth a shot to mention. If you see that this helps any at all, I'll be glad to post links to those exercises I do. Hope you find help that works for you.
It will get worse. I started when I was about 35 with a bad episode when flying on long flights. But only once in a while, but by the time I was 55 it was 24/7. I drank lots of red wine and would get drunk enough to sleep 4 or 5 hours. They the wine started making me sick before I got enough to sleep. By the age of 55 I stood on my feet all night and read a book, then it got where I couldn't stand still long enough to read and several doctors prescribed several different meds. but all they did was make me into a zombie who couldn't be still. In 2002 I saw a doctor who was also a friend and told her I was at the end of my rope. She knew me and what I meant. She had me sit in her office until she found something she had seen on RLS. It wasn't scientific, but was from one of her girlfriends who Had RLS and the was the first time anyone had told her about the symptoms. Miripex is a dopamine agonist and has been used for parkinson's but she gave me a small dose. It allowed me to sleep a long time the first time in months.
The Med made me feel so good and powerful I took it all the time, however it made my obsessive compulsive habits worse and I lost a lot of money gambling and had never gambled before.
Take the med ( dozens and counting) but know and recogonize the obsessive compulsive urges to do the pleasurable things in access and resist the urges.
Hi Steve. Know exactly how u r feeling . Haven't been on the forum for a year, but it has certainly got worse not better. I would describe it chronic, however I don't have cramps, so I'm lucky. Just the awful restlessness that wakes me up every two hours and it takes time, 20 mins to an hour to get back to sleep. I haven't taken any serious medication as no one has convinced me it works. I eat well, don't drink alcohol, good work life balance, so I can't understand why I have this. It may be linked to a genetic blood condition that I have, but I don't suffer from that right now. Bizarre. Think I will try acupuncture. It worked with the cigs. Best of luck to you!
thanks for response. The sleep patterns you describe was how it was for me before getting medication. Best time for sleep was after 4-5am and like you say - maybe 2/3 hrs to beat the exhaustion & maybe 5hrs on a good night. But I can't cope with that now - Ropinirole or Pramipaxole give you a reasonable night's sleep, but the side effects are worrying. Which way to go??? RLS is indeed a horrible disease.
Hi all...thanks for all the replies along with your experiences and the various treatments you find work or not...one thing I am aware of that possibly affects my RLS is the fact that I do not eat well,so perhaps one of the contributing factors is a lack of iron ( could it be that simple ?)...I`m going to look into the various treatments suggested and try to get an appointment with my doctor this week...which is a whole battle in itself just getting to see somebody...but I am reluctant to take some of the treaments suggested as I am aware there can be nasty side effects...however,what is it I want ? ...Yes,relief from this ailment and I guess at the moment I`d take anything that worked...I`d like to reply to you all individually but at the moment just don`t have time so please accept my thanks... bye for now,Steve.
Hi all...just a short update...for the last 2 nights (Sunday and Monday) I have had a little easier time of things...I took some magnesium tablets beginning on Saturday that I had forgotten about and my Sunday night was much easier although I didn`t get to sleep until 8am ish...Monday night (yesterday) I managed to lay in bed without any spasms etc although I didn`t get any sleep (and was awake on the laptop as usual) until 6 this morning and slept until 10.30am...although not ideal it`s a huge improvement on the last 7 weeks when every night has been an ordeal...I also have been eating proper meals which is something that is quite hard for me to do as I never have any appetite at all...I`ve been through this "improvement" scene before whereby the RLS kicks back in regardless of what I`m doing but for now it IS a small improvement...happy sleeping,Steve.
Hi Steve, pleased you are at least gettin some relief/sleep, even a few hours can seem like heaven when you are so sleep deprived.Now I could be muddling you up with another member but did you say your daughter also has RLS? If so its highly likely that you have Primary RLS which is the genetic type.Could have been lurking under the surface just waiting for the trigger (when you reduced your med). Dont forget to get your ferratin iron checked out , it needs to be over 70 for RLS sufferers so ask for the actual number as 15 is considered normal for a non sufferer...Pipps
Hi Pippins2...lucky me...I`ve just had 3 hours sleep from about 11.30 until I woke with a kicking leg around 30 mins ago (2.30 ish)...that`s the first time in about 7 weeks that I have slept even half way "normally" as in during "normal" night hours...You`re right about my daughter...I know that she does have an iron deficiency that was extremely low during her pregnancy with my grand-daughter...and as if often the case,the iron supplements she was given by her doctor made her ill/worse...I`m going back to my doctor this week for results of blood tests so will learn a little more soon...Steve.
Had to come on here for another update...after my hopeful tone and optimism above I have come down with a small bump...it is just after 5pm and I have been suffering with spasms for about 40 minutes or so...I have NEVER had any spasms/twitches during the day before...so it seems if you get away with it for a short time it comes back to get you at another...what an intolerable situation the ailment puts people in...oh,well...I`ll see what happens later...bye for now..Steve.
Hi Pippins...I could stay on the buprenorphine but this is not prescribed by my GP but a hospital doctor so it all becomes rather a muddle...several years ago I became addicted to morphine after being in a petrol flash fire and being given morphine while in hospital...(I`m very lucky to have no scarring left from the burns)...I could ask to increase the dose back to an effective blocking of symptoms that I noticed before...but the muddle between the doctors is that the GP`s won`t prescribe medication for addiction (although they could) and so leave it to the hospitals...I am almost at the point of coming off completely and am today going to try to get some communication going between the two sets of doctors so that I can get treatment from the GP...it has been so difficult to see my own GP that I`ve not seen her in over a year and the other GP`s at the practice don`t know my case etc and so nobody has time to actually get to grips with sorting something out...the other odd thing is that IF I were being treated by my GP for RLS then they could/would prescribe medication that is opiate based etc (the very same treatment they won`t prescribe for addiction).
On a good note,I slept without any symptoms last night from around 2am until 6am and then dozed for another 2 hours...I have been stuffing myself since Saturday with greens/broccoli/veg etc to see if iron makes any difference...it seems to help as this is the first spell in 7 weeks where I have slept before 5am ish and had no symptoms during the night...as we know though,this can all come back with a vengeance ...Steve.
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