1) How many of us on here have used drugs to control the RLS and how many have NEVER used drugs?
2) Of those who took drugs, (whether prescribed or not), has anyone managed to get themselves off them and are currently or have been for a decent period drug free?
I ask because for me the ultimate goal is to get away from all drugs that I take for a variety of conditions and manage myself drug free and want to see if anyone else has managed it or am I l being unrealistic? I am sick and fed up taking/needing to take drugs and Drs!
Raffs I don't know if this is what you mean but have always been able to come of the drugs I was on but only to go on some more. I am on 1 patch 2mg and 100mg Tramodol a day but when I cut my tabs out I have probs I would love to try without the patch and just have tram but am on hols and next week it's the daughters ,the thing is you take the meds and you are still up all night wish I had the nerve to try,my meds make me very tiered Does anyone have one week without no rls
Not quite beady3. I tend to do that, well the drugs start to stop working I stop taking them then after a week or so of hell I go running to the G.P. for something else.
I am sorry of my RLS. Am on the 4mg patch along with one Mirapex a day. I take 3 Gabapenton per day. In the last three weeks I've only had one break through. I almost feel human again.
I have been on them for a long time. My body struggled in the beginning but soon I got used to them. I just started using the Neupro patch which enabled me to cut on some of the meds.
I suspect that anyone coming to this site does so in desperation after exhausting all options. So any result will be skewed.
My own input is that I've had rls all my life and learnt to avoid many triggers- salt, rising agents , sulphites etc. This was livable with untill I met a certain tree on its way to the ground and needed major spinal surgery. After the opiods wore off the rls kicked in big time - hence medicines.
I don't have the courage to get off the meds to ascertain whether the rls was due to opiate withdrawal or is back to pre accident levels.
You can send the pen to the charity of your choice!😀
I get where you are coming from about not having the courage, I am working up to it hence this thread. I've been drug free a couple of years ago, (just prior to discovering Kratom), and for 2 months it was a living hell. Between withdrawal and RLS I was in a really bad place so-much-so I think I was traumatised, (and that is no exaggeration).
My GP wants to try me drug free too but if I go through him it will be like the last time - go drug free then wait a year for a pain clinic referral to go back on what you were on!!! I'll have to wean off and work it on my own which is probably for the best anyway.
I have never used drugs to control my RLS but have had drugs to control other ailments and conditions. Some may have helped with my RLS symptoms of which I suffer intermittently. I consider myself very lucky because I know what having RLS is about because it occurs every now and again for varying lengths of time and always has, for as long as I can remember.
I have never had a problem with giving up medication. Painkillers should be called pain dullers because that is all they do and all medication appears to have side effects either immediately or over time.
Raffs, it depends what you are taking meds for as to whether it is a good idea to stop them all. I would not stop taking my daily thyroxine which I have taken for 40 odd years after removal of a nodular goitre and too much was taken away so I need to replace the thyroxine daily.
My drugs are pain and RLS, and of course the obligatory Losec to counter the effects of the pain drugs on my stomach.
I understand certain drugs people are going to have to take, (although many could be done away with with proper health regimes), but I know mine aren't necessarily life and death, (although ask me when its bad and I have nothing and you might get a different answer).
I am working hard, relatively speaking, on my diet and exercise in the form of yoga/pilates, and have read where many have stopped pain drugs through these methods. I would love to be drug free and hope that if I can get the pain under control then maybe the RLS could be better attended to as it seems to me as my pain levels have increased and my ability to tolerate pain has decreased over the years along there has been a corresponding rise in RLS symptoms.
Now this might be no more than coincidence but its an avenue I haven't fully explored before, as I always needed the drugs so I could manage to keep my job so no job no worries there - every cloud and all that
BUT IF I get the pain sorted I might be better placed to get the RLS sorted and am going to see what others have done/used and may be able to adopt some of their methods hence the forward planning with the questions.
I don't mind taking minerals and vitamins but want away from prescribed drugs if possible.
I think you are doing great, it takes a lot of courage to wean off drugs especially when they sometimes help to give one more quality of life. I am sorry to hear that your ability to tolerate pain has decreased. I think mine has increased because as I get older I appear to get more pain with conditions but take less meds. May of course be, because I am no longer in paid work ,children have long flown the nest etc. My time is my own usually. Just wish I felt a little better sometimes and were as mobile as I used to be!
You have asked interesting questions in your thread. Good for you for going down the road of exercise and looking at your diet.
I agree with you, best work on your own with weaning off drugs and finding what you want to do re exercise and diet.
You sound pretty determined and that is good news. Keep positive and I wish you well. Power to you.
hi raffs like beady to change from one to another am now on pramipexpole 3x 088mgs plus just gone onto pregablin 2x50mgs am trying to cut down on the pramipexpole by half a tab at a time ok for the first 3days but had a crap night last night but am still going to see how it goes
Hi Stan, sometimes we have to accept there will be harder times on the road to ease. Good luck on the change over.
For me when the drugs start to stop working I quit them, I didn't even realise until recently that you were meant to taper off the DA drugs and my GP has never advised this, I know that weaning off the opioids is easier but I like it over quicker so I go cold turkey there too. I don't think its courage so much as in being fed up being unwell and seeing the drugs as part and parcel of that 'unwellness'.
I think weaning will get you where you want to go. I do not suggest cold turkey, but you have to make that decision yourself. not sure WHAT meds you are on right now, but if you are on several meds, I would stop one at a time, and see how it goes. That is just me and my thinking of course.
raffs, i have Primary RLS, as do most. So, its my genes that are at fault and causing my RLS. I once went 14 months without meds a few years ago as even back then what i had tried were giving me bad side effects in the day. In that time i tried i think everything, magnesium, folic, acupunture, hynotherapy, one of those foot vibrators, tens machine. (soap, sshhh ) and lots i cant even remember now, but everything but meds. I was becoming a mess, so sleep deprived, tearful almost every day. After 14 months i couldnt take it any more, i had to go back to the doctors for something. The Neupro Patch had just been approved for use for RLS so i went on that. BUT, since then i am back to side effects everyday, from anything i try. Even the patch doesnt like me now.
So, i dont even want to go back to how i was during those 14 months. For me, the meds work so that not the problem, its the side effects. I can start a med and all is fine for maybe 3-4 weeks, the side effects are minimum, after that first, wow, this is working well, the side effects hit me. I have no choice to stick with the meds if i want to get some sleep, i take the smallest dose ever and i dont sleep all night but better than no sleep at all and put up with the side effects, which by the way are drowsy and dizzy, i feel woosy all day.
I hope if you go ahead with weaning off all the meds works for you i really do, i wish you good luck.
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You appear to be in the same boat as myself with the primary RLS and long period off and reluctance to experience that again only I'm a right thick and stubborn one, (I would prefer an expletive beginning with C instead of one) when I put my mind to it, I may fail, (again), but I'll go down swinging!
I've been taking something more or less for the past 14 years, (although have had RLS since before I can remember), and have had enough!
I have been on meds for 46 years out of my 60 yrs. I wish you all the best, but I KNOW that is not for me. You will get all kinds of opinions, but cannot fault anyone for being sick and tired of being sick and tired.
i am on vitamins, supplements and strict diet and chiropractic exercises to try to take lowest dose of drugs but nothing is working. Last night I was awake until 5 this morning then slept until 8 then up with RLS until 10. Back to sleep from 10-12 and then woken with RLS again. Slept from 1-2.30. SO 6.5 hrs over a whole night and half the day. I know what you mean about trauma, I am feeling tearful and having panic attacks. I tried cannabis which allowed me about 1.5 hrs sleep but the tramadol and gabapentin aren't working.
I will have a go on the opiates but not sure I could stand it if they stopped working. I'm normally so positive but have to admit this is not living.
I wonder if anyone has come off DA's and then after a while gone back on without triggering augmentation? I think the Neupro patch is a possibility after ropinirole stops working.
I really think it should be classed as a disability. As soon as you are diagnosed with Multiple sclerosis you are covered by the Disability Act in the UK but I have MS and RLS and only the RLS is ruining my life. I can deal with all the MS symptoms but not the RLS.
I'd happily take a very high dose of drugs if they allowed me 7 hours sleep over 12 hours during the night. I'm becoming a vampire.....
You're in luck, I was on Mirapexin got either augmentation/natural worsening of symptoms and stopped cold turkey. Believing the DA to be the cause of the worsening symptoms I swore I would never take one again until reading on here.
I am now on the Neupro Patch and Targinact. If I miss one or the other my body goes mad. I take the 2mg patch and 40mg/20mg of the Targinact. Its a hefty dose and I still haver bad nights/days , even with an odd tramadol or other drug I still get symptoms, but am dealing with them via distraction when I can as opposed to taking more drugs.
I have ME which is a pain in the ass no doubt but not as hard on me as the RLS if I could get rid of only one it would be the RLS.
Have you tried cooking the cannabis or making the oil? When taken orally the effects can last a lot longer - that 1.5 hrs could be 4 or 5, (also different strains different ability to treat RLS).
You may also be interested in Kratom if you can get it some here including myself have had great relief from it:
Interesting that you're on targinact and the neupro patch. Did you find targinact didn't work on its own?
Like you I have primary RLS (made worse by my MS scars in the lower spinal cord) and I have it every night as soon as I try to sleep/rest. I think I could cope with it if I only got it every 3 or 4 nights.The US has just confirmed that they are not making kratom illegal so all the people in the US who find it helpful can carry on using it. I would like to try it again but as it's illegal here in UK now I know I might get something that's not genuine kratom so I'll leave it. I agree that baking with cannabis might make it last longer in the system so might try that.
Hope you manage to achieve your wish to be drug free and find something that works.
Jools, dont be tempted to try another DA just yet, you havent been off the pramipexole long enough. But, i know when off a DA for a period of time, it is possible to try another DA, and the best one to use is the patch, but need to stick to the lowest dose of 1mg and then add another different class of med along side it.
I think I just had a really bad night so feeling gloomy/desperate but I just need hubby to give me a kick up the proverbial backside to make me concentrate on the good nights. I'll keep a mental note about the neupro patch for the future.
Thanks all for info on what works/ doesn't work as it is useful knowledge for future.
Although I had RLS since infancy I was only treated for it about 14/15 years ago so managed 30 years on my own, but like you since starting drugs, (was for a back injury then found they helped the RLS) I have been unable to get a substantial period clear. I'm beginning to think I may be looking for too much, (mind you I'll still try).
Raffs during my drug free years (well for about 12 out of the 15 years ) my RLS was only occasional maybe once a week so it was quite easy to be med free then x
Yeah since things have gotten worse for me a good day means being pumped full of drugs and being lucky! I went from 4/5 hours at night to 18 hours of agony a day, much harder to be drug free then ime.
I am trying to come of medication, i am building up my magnesium, i take 500mgs magnesium glycinate last thing at night, presently sorting out to get my ferrous gylcinate, then hopefully. Been taking magnesium over a week now and see improvements.
But it may be early days going to order my ferrous glycinate on line. I am not getting to excited yet,, what a wonderful thing it would be if i could get of mefication.
I read on this page that someone has done this and is completly of his medication, if i am not mistaken, he was on ropinerole like me but also tramadol. Good luck, nothing ventured nothing gained.
I'm taking Meripex extended I use to take Meripex not in extended and it was almost 2milligrams at times. Now I take .75 milligrams of extended release Meripex working on .50 milligrams soon. I can't wait till I can drop it altogether that will be a day of celebration!! I feel so much better already I dropped almost 14 pounds and eating healthy and eating before 6:00 taking vitimin supplements and drinking lots of water I hate the side effects of this kind of med and I feel like the weight and all is part of it. I don't think you are being unrealistic because I have used this drug for a long time and I'm doing it may take awhile but I will succeed.
I use any drug I can get my hands on. Seriously as long as its not mixed with Tylenol to destroy your liver like they do in the states (isn't that lovely?) I take it. I will not even attempt drug free until the medical Establishment takes RLS (and arms too) seriously.
hi my life was hell before medication for rls and i kno i will never be able to not have anything at all for rls because you need medication to help control it as there in no way you can stop it on your own .
Yeah it certainly is a difficult one especially the hellish nature of RLS uncontrolled, I would be embarrassed to be in public in full flow with my arms flailing and back twisting and legs jiggling I'd be like a walking epileptic seizure!
hi well yes ppl look at me when im on the train walking up and down and if having a meal i cross mt fingers hoping to be able to sit .would not want to go back to hell for the sake of being drug free.i dont have a choice but wish i did.
I have not taken any drugs for RLS. I have had it since I was a child. I am now 65. It has been up and down with RLS over the years, but I have been able to control it rather well with certain herbal/alternative supplements, as well as Chiropractic care (very important, but only part of the answer.) Yes, I have had RLS be very severe - nerve impulses coming every 10 to 15 seconds continuously - can't sleep-ready-to-jump-out-the-window! severe. I have also had just a few impulses disturb me very little, AND I have had times when it does not bother me at all. I had some times a few years ago where I could feel it in my arms.
Right now is a good time. I am keeping up with the things I feel to best help my RLS and it is not bothering me hardly at all. I know it will never just go away - it needs to be managed. I know there can be flare ups that can be harder to get thru. I know it seems to have internal chemical imbalances (thus the herbal/alternative supplements), besides physical imbalances (such as pressure/irritation of the nerves, thus the Chiropractic care.)
I also do certain stretching and flexibility exercises (a mix of Essentrics by Miranda Esmonde-White and some Yoga.) These help to keep the spine and the joints loose and flexible, so there is less pressure on the nerves. For me, when there is pressure on the nerves (I have had some nasty falls on my tailbone, and my sacroiliac joint goes out) the RLS is SO much worse. When things are put back right by my Chiropractor or extra stretching or wearing a Sacroiliac support belt, my RLS is much more mild if it starts up.
If you have any other questions or want more detail from me, I will be happy to oblige. Good for you in asking your two-part question!
Thanks for the post good to know others are making it.
A wee well rather big point I forgot to make but I am not saying the drugs are bad, I would not be here today without them; its just they are another reminder that I am unwell. I hope no takes any inference that drug free is better because its not what I believe but will be an indicator for me that life is better.
I'm just starting down the Yoga road and doing physio so am sure that will yield results.
I've been trying to read a bit into epigenetics and apparently via thought, diet and environment we can activate/deactivate some of our genes so there may be hope via that method.
Also working on a good supplement scheme that will help boost my diet.
Meditation has been a part but I intend it to be a bigger one.
I'm planning to top it off with the SIlva Mind Body Healing course a friend gave me and I am looking forward to improvements with all health difficulties.
Fingers crossed.
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I wouldnt be to hopeful about changing you genes, if only it was that easy, all of those with Primary RLS would be changing our genes. No trying to be negative on that one....but. I dont think any of us are thinking you are against taking meds.
Hi. I went about 16 years with no drugs or very infrequent drug use. I tried all the alternative therapies I could think of- to no avail. I eat well (plant based/ vegetarian) and exercise (yoga, cycling, walking) and meditate. None of these things has stopped the RLS but all enable me to cope better physically and psychologically with it. Upping my iron levels to over 90 reduced my nightly episodes from 6-7 hours to around 3-4 hours- which was a huge blessing. I continue to take iron. About a year ago I decided to try codeine because the disease had worn me down and I was finding it hard to contemplate coping with it every day for the next 20 plus years. I now use Codeine about 5 nights a week and have 2 days drug free. This is currently working for me. Although it does not eliminate symptoms it makes them more tolerable. Until recently I was alternating the Codeine with Diazapam but the latter no longer works. I wish you luck eliminating your drugs. Keep us updated with your progress.x
All I can do is wish you luck on this one.........You have more than RLS going on, so that is your decision and how you make out. It will NOT be easy. Are you still taking Kratom? They just made it illegal in the US. Anyway, I know enough after 46 years of RLS, that I will happily take my meds, I also have lots of other things going on besides RLS, so med free is not in my future, and that is ok with me. Let us know what you decide. You may just be feeling frustrated at things right now, as we all do sometimes. Cheers!
No not taking the Kratom, just what the Dr has prescribed.
I am sure the decision to try to go drug free is a reaction to being so ill for so long - its a goal to work towards whether I get it or not isn't going to be the be all or end all, just something to focus myself on as I try to get well.
Hi Raffs, I started on Pramipexole 6 years ago when I couldn't sleep for more than an hour at a time before my legs woke me up. I take occasional drug holidays to avoid constantly upping the dose and am currently on 0.088 x 2. I barely sleep during drug holidays (though the daytime symptoms vanish) so I can't see me ever being able to give up drugs of some sort.
Raffs could you tell me more about Kratom please? I am 85 had RLS since I was 21 and it is severe. I have tried all the usual drugs and nothing has suited except Tramadol which I take now as well as Temazapam at night. I'm in the U.K. so is it legal here ?Best Wishes
It's no longer technically legal following the absurd change in laws those clowns and sh1ts in Westminster enforced, (you can take dangerous drugs as long as they are the Govt's drugs).
You can still get it google is your friend there, I'm sure you'll find a reliable source easily.
It works on the opioid receptors as a mild opiate but with great efficacy for RLS. People have been using it instead of prescription drugs as it is much safer and cheaper and people with heroin problems have gotten clean using kratom so naturally Governments would ban it - can't stop their buddies in big Pharma loosing profits!
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So many questions ??
Drug holiday?
How many nights should I try going without tablets?
