So, here's my story.....I have had RLS for almost as long as I can remember (probably somewhere around age 9). It started out as happening somewhere around once every couple of months, and, by the time I was a teenager, it was a couple time a month. By the time I was 23 (in 2000), it was almost constant. I tried to explain to my parents, friends, husband, doctor, etc what was going on, but no one could offer any solutions. At 23, I began taking muscle relaxers and pain pills for a seperate issue, and it was great! I was getting sleep and never had any RLS symptoms. Fast forward 10 years, and I ended up having surgery to cortex the issue that I was on medication for. Once I weaned myself off the pain meds and muscle relapers, my RLS came back with a vengeance. I started having RLS symptoms in my hands, fingers, elbows, across my shoulder blades, and my knees. I suffered with episodes several times a month for almost 4 years before my doctor finally prescribed meds specifically for RLS. Within just a few months, I maxed out on the dosage of Mirapex, and my doctor decided to add 400mg of Gabapentin to the max dose of Mirapex. This combo has worked pretty well up until just a few months ago, and now I have began having episodes with the meds. I am now at the point where...if I miss a dose or run out of meds, I am miserable. Without meds, it is ALWAYS my entire body (always at the joints). I cannot sleep at all, and usually end up staying up all night jerking, and looking the a crack head that can't set still. I am wonderingif anyone on here has found any temporary fixes to help get me through nights where I don't get my meds, and also if anyone has any suggestions as to what meds I could possibly change to now that my current meds are not working.
Any suggestions, stories, and replies are greatly appreciated!
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Kazamie
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First of all, there is an association between mirapex and the side effect "Augmentation", which means "a worsening of the condition". I augmented on mirapex 2-3 years ago and it was awful!!! I was up and down every night for about 8 months. Augmentation is a side effect associated with dopamine agonists. I don't want to give you advice on what meds. to take, but I can tell you what I was switched to once we figured out that the Pramipexole (mirapex) was the culprit. I am on the Neupro patch, which is the dopamine agonist that carries the least risk of augmentation.
Things that work for me:
Compression stocks help calm my movements (I use knee-high Jobst and Futuro)
Heated massager
Magnesium oil does wonders for the pain
Soaking in warm water (I swear I can feel the blood flow!)
Putting my legs right up to the jets in the hot tub at my local pool. The pounding feels wonderful!
Bromelain (pineapple extract). My husband read somewhere that this helps with inflammation, so I started taking some. It's hard to tell if it works or not, but I like to think it does . This and pineapple juice.
I've also tried Restless Legs Cream by Magnilife (can get on Amazon), but it doesn't always help me.
Thanks for the sites. I will check them out. Making an appointment with my doctor monday to see about getting off the Mirapex and Gabapentin and on something (1 something) that will help.
Thanks for the advice on the research. I will definately check that out. Im going to make an appointment with my doctor on monday to try and switch out meds and get off mirapex. I was wondering if you have tried lyrica, and if so, what side effects you had. Do you have any side effects with the neupro patch?
Hi Kazamie, sorry you are having these problems. It is possible that the dopamine agonist you are taking (mirapex) is exacerbating your symptoms due to augmentation as already advised. If this is the case you really need to wean off the mirapex in order to establish what your baseline symptoms really are.I would not move onto the neupro patch until you have eliminated mirapex from your system completely for two or three months as it is another dopamine agonist and will only carry on the augmentation if you start taking it at this stage.
I take it at the lowest possible dose and experience very few side effects but others find it intolerable. I only take it for a few months at a time and then take a break from it and use alternative medication in order to avoid becoming too tolerant of it and also to avoid augmentation.
One of the most important things to establish with RLS is your iron levels by means of a serum ferritin test (your GP surgery can carry this out). You need to get the actual figure - they will often tell you that your levels are 'normal' but you need the actual figure. Optimally it should be over 100 for RLS sufferers. I found that raising my serum ferritin levels by means of oral iron had a very positive impact on my symptoms though I still need medication. There is a small minority for whom raised iron levels does not help but hopefully you will not be among that group.
For very effective temporary relief you could try kratom. Unfortunately, if you are in the UK this is illegal for internal consumption but apparently is legal as a clothes dye! It is legal in most states in the US. It can be ordered from various sites in Holland. It is derived from a tree grown in South East Asia. If you put it into the search bar on here you will find lots of posts about it (some from me). I like it because it can be used as-and-when - you don't have to be on it all the time.
Finally in addition to all of the very useful suggestions made by Jess3648 you should also check to make sure you are not inadvertently exacerbating your symptoms by any other drugs or lifestyle choices you are making.
Very best of luck. I hope you manage to find relief.
I wish kratom or even marijuana were options, but....im a police officer in the U.S., so that limits the medications I can take and still be able to carry a gun for a living. A lot of antidepressants, opiates, pain killers, and muscle relaxers are not acceptable for me to be able to keep my job.
Oh ... that does make a difference. A couple of other options that work sometimes for me are: lying on my back with my legs raised up against a wall (bottom as close to the wall as possible); kneeling on my legs and folding my body forward over the legs, head on a pillow; yoga stretches - when my RLS was untreated for a while I became very flexible with repeatedly having to get up and do a yoga and stretching routine. They would generally afford at least 30 to 60 minutes of relief at least.
I have seen other exercises recommended in which pressure is put on the small of the back (eg the 'bow' pose in yoga). Still others recommend strenuous weight lifting exercise but I find this just too difficult to do in the middle of the night.
I have also seen recommended (but did not find effective myself): rooiboos tea, apple cider vinegar, magnesium, vitamins B12 and D.
There are many recommendations for restrictive diets such as the fodmap diet (some very enthusiastic endorsements on here), the low chem diet, low sulphur diet, ketogenic diet etc. Certainly, I find a very plain diet with very little sugar (particularly ice cream), artificial sweeteners and caffeine (and no alcohol) is useful and also going to bed with a relatively empty stomach.
Given the extensive restrictions on your potential drug regime you could look at a Relaxis pad although it is eye wateringly expensive. I have one and find it can be very helpful. Having said that, there is a webinar on the RLS Foundation website (RLS.org) that refers to a study that found the Relaxis did not help with RLS. This has not been my experience but neither is it a silver bullet. It is just another device that sometimes helps.
I think that in the long term, you are going to have to come off the dopamine agonist, at least for a while. This will reset your tolerance to it. And I would reiterate the importance of iron.
How do you manage to function with no sleep from coming off the dopamine agonist? I go one night without meds, and I am literally awake all night. I cant5imiagine being up for days, weeks, or even months to eliminate it from my system. Would I take something as a replacement?
It is very very hard but it does introduce you to just how deep you can dig and how stoical you can be. I used to wonder whether I would be able to withstand torture and now I know I can withstand at least certain types of it.
There is no way that as a police officer, I could subject myself to copious amounts of sleep deprivation. When it comes to the possibility of putting someone else's life at risk because I voluntarily subjected myself to sleep deprivation....well...that is completely out of the question
I really feel for you. You are in a bind. There is a long thread by Nick the Turk about his withdrawal from a dopamine agonist. It might help you to get an idea of how long it would take and at what stage the sleep loss would become critical. I seem to recall that the really bad symptoms didn't kick in until my dose got quite low when I was withdrawing. Maybe if you come down VERY gradually- like over a year or so and get your iron levels up at the same time it wouldn't be do bad. I hope you manage to find a solution.
Weaning down very slowly might help with the withdrawals. but most find they need a strong pain med to help, especially getting off the last bit. But as thats not an option for you, then not sure what your answer would be. As a suggestion you could email Dr. Buchfuhrer on his website rlshelp.org and ask for his advise with your situation being a police officer in the USA.
Its really only a opiate like Tramadol a synthetic opiate which will have any impact with the withdrawals. And you would only take that at night when you are weaning down,,, BUT you will still have bad nights until you are completely off the the mirapex and for some time after. Thats why i suggested emailing Dr. B.
With great difficulty. I was given a prescription of sleeping pills a few weeks ago. I only take them once in a while so I don't become dependent on them.
involuntarydancer I manage my rls with kratom 100% I don't take any prescription medications. I find myself taking it every night instead of waiting for the rls to start (my original plan) because if I don't I usually get woken up by my crazy legs. I take 2-3 grams every night and am worried about building a tolerance to kratom (I do love that stuff) I have been off ropinirole for only 2 months after several months of weaning . My question is do you have any side effects in particular impulsive behavior from the neupro patch? I suffered terrible side effects especially impulsive behavior and augmentation from ropinirole. I thought about asking my Dr. about the patch to rotate off kratom to avoid tolerance because I have a fear off the kratom becoming less effective.
I am very vigilant about the problem of impulsive behaviour as I suffered it when on mirapex. So far I have had no problems but am determined to maintain the lowest possible dose of neupro - 1 mg. This is why I am interrupting neupro intermittently with kratom and vice versa. Like you, I enjoy the effects of kratom rather a lot and for that reason I feel it is better not to use it all the time. So far the system is working reasonably well although I did experience 3 days of unpleasant symptoms when I came off kratom last time (I need a higher dose than you to quiet my legs). I have to say I have better control of my symptoms on neupro but I am very glad to have kratom to assist in managing the problems of augmentation and other problems associated with neupro.
Should also have said, I stayed off dopamine agonists for nearly 5 months after coming off mirapexin though my sleep consultant was happy for me to start neupro after 3 months. It might be better for you to leave it another month or so before starting the patches. What dose were you on when you experienced compulsive behaviour?
It would be so cool to have someone else doing the same rotational system as me. However would also say that re your fears of becoming tolerant of Kratom there is a woman who posts on the US RLS forum who has been on it for years without becoming tolerant.
involuntarydancer I still struggle with insomnia. I have been trying different samples of the more sedating strains of kratom and some dietary supplements . I took my dose earlier than usual last night and got about 6 hours of broken sleep ( only woke twice and was able to get back to sleep). I feel great today because that is unusual for me to get that much sleep! I am going to give it a couple more months before I discuss the patch with my Dr. I had a problem with compulsive behavior on a low dose of .5 mg of ropinirole and got even worse when my dr increased it to 1 mg because my rls symptoms became worse Neither myself or my dr realized it was augmentation until I researched it. I am hopeful your rotational system would be duable for me. I did sleep much better on ropinirole until it turned ugly on me. Very hesitant to start any kind of DA but hopefully cycling off will help. If you could share a link to the US forum you mentioned I would like to check it out .. Many thanks
Terrilynn, I notice in previous post you mention you suffer from insomnia. I am plagued with that too but find I sleep much better when on neupro than when on Kratom.
Adding to the exercises that involuntarydancer gives, there are 3 exercises recommended for RLS patients that provide me some relief (only temporary, but worth doing for me).
Google "exercises for rls" and click on the first link (from Healthline). Halfway down the page is a section called "stretching routine". There are 3 stretches: calf-, front thigh-, and hip flexor stretch.
Hi, I have also suffered RLS for many years, i was put on mirapexole which was amazing (looking back don't know how I coped before this med) & have always thought 'you can never ever stop working😂 On it for about 9 years, then all of a sudden about 4 weeks ago I thought oh know that evil thing is coming back into my body, slowly got worse, my worse nightmare, so I just upped my dose it helped a bit, but was only taking 2 a day anyway, so went up to 4, didn't take it all away still up half the night. Went to doctors & she said iron is very much associated with RlS so if it drops it could stop pramapexil working so I had my bloods taken, mine was at 59, but I read on here someone said people with RLS should have a higher iron level of 70-100 so mentioned this she did agree & now I'm on iron tablets twice a day she said it would take a few weeks to get into the system! Started to work a little bit but oh the sleepless nights I am exhausted. It's weird cos in the night while I'm up walking round & round whilst everyone is sleeping I'm actually crying & thinking why did I deserve to get this can't take it anymore, then when everyone's up, I'm exhausted but then just get on with the day! Also someone else on here said ask go for an iron infusion injection keeps him going for 6 months so has it twice a year but works straight away(obviously with pramapexple)
I might have been the one you are referring to...my ferritin was 70and it needs to be over 100 for those of us with RLS. I was only on mirapex for 3 weeks but really didn't want to take it. Weaning off was hell even though I had only taken it for a short time. Been on gabapentin since October and had iron infusion in March. I was able to reduce gabapentin when my iron was raised by the infusion. Dr. Early at Hopkins says the infusion should last 6-8 months.
Kazamie, where are you in the US? I am in Maryland.
Hi, Just to illustrate how some things work for some, and not others, when I wear jeans that are tight around my calves, by the end of the day my legs are often in the "pre-rls" mode, so I have never dared to try the compression stocking idea. When they get particularly bad and I know I am in for a difficult night (despite drugs) I have hot bath with Epsom salts which definitely helps for a while I do hope some of the suggestions work though. I hope you find some of the suggestions helpful. E
It's funny you mention an Epsom salt bath. I thought of trying that the other night when I was up pacing the floor. I've never had much luck with baths helping. Sitting in a very hot shower and letting it hit my legs used to work, but haven't had luck with that lately. Anyway....back to baths, I was wondering if Epsom salt would make a difference. I may try that next time.
Not sure if anybody has mentioned on this thread (haven't read all of the replies) the benefits of hydration....I came across this a few weeks ago and thought I'd give it a try....drink at least 2/3 litres of water/squash per day....apart from the obvious having to wee every hour or so, I have found to my delight that on the days that I manage to do this I have no rls AT ALL ....!! It's like a miracle ! I still take 100mg of gabapentin in the evening just to make sure, but I am sleeping through the night (apart from getting up to wee! ) it's brilliant and all that water is good for you...result !!
I think you're onto something there, Dotsicle! I notice that it does help to stay hydrated! I don't hydrate enough (despite knowing that it helps), so I ask my husband to help remind me. I think it helps because it flushes everything down. My theory is that RLS has something to do with blood flow, things getting "stopped up", and inflammation.
Since reading a post about water I have started to drink much more and really do think it helps. Mad to think something so simple might make a difference.
I am currently on 400mg of Gabapentin and .5mg of Mirapex at bedtime everyday, and have been told that I am maxed out on both. So, I guess I'm just trying to get a good list of meds to try next. Lyrics is off the table for me, as I tried it before, and was having some crazy side effects. I couldn't remember small words, would walk into walls (like me equilibrium was off), and had some hellatious nightmares. So, I'm just wondering what all of you out there have had success with.
I've been on RLS meds for 20 years. My favorite is an old simple non gourmet drug called senimet which is carbo levo dopa. You can take it any time, and can stop without any side affects. I believe it's cheap and not a pushed pharmaceutical. After a year 1 take a month break and use requip which you have to titrate on and off 🙄.
I recently changed pcp and this guy will only give me mirapex and doesn't work well and has lots of side effects.
Very interested to hear you mention in your later post that you have supplemented magnesium in the past and it didnt work for you. Do you remember what dosage you took?
We use magenesium citrate at between 450 and 550mg every night before bed and have relief from rls. My husband was suffering with rls for years and once he started the magnesium the symptoms were under control within days. We both take it, and know that we have a much better nights sleep also as a result.
Magnesium is vital for the normal functioning of the muscles and the nervous system in the entire body.
When you think of the symptoms you have with rls they are both muscular and twitching of the nerves in the legs.
Magnesium deficiency is widespread in western society and largely undetected according to research. The RDA for magnesium is 350mg for women and 450mg for men (approx) for normal dosage. Higher dosages to treat symptoms. One cup of cooked spinach contains 90mg of magnesium, so you can see you would need to be eating a lot everyday just to get to the RDA (Recommended Daily Average). A blood test can determine if your magnesium levels are normal or not. Numerous studies have been done which document the issues arising from magnesium deficiency, rls among them. Alcohol and coffee are known to leach the system of magnesium.
If you have not supplemented at the higher dosage it is possible that the magnesium did not have a chance to work properly. Epsom salts and magnesium oil deliver much lower dosages of magnesium, so supplementation is the key. Absorption would be improved if you were also taking a good multivitamin with potassium, Vit C and B vitamins.
You could check with your doctor about taking magnesium even with your current medication and see if it works for you.
It's been so long ago (when symptoms were not this bad) that I couldn't even begin to remember the dosage
Sooo sorry and understand exactly what you are going thru. I have had this affliction forever. I am now 63.
Please find and read my first post of about a month ago. It explains exactly and in detail the meds I am on and I've also included the proof that they work 100% for me. Of course, no guarantee that they will have the same success for you.
I too have RLS thru my entire body. Once ... they all hit at exactly the same time (while I was laying in bed) and my whole body literally jumped off the bed. (I was almost expecting the green soup to arrive) !!!
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. This and pineapple juice.
Is it RLS? 
is it RLS?
pain as a symptom of RLS?
Rls
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