I am going to send to many of you the following info for RLS sufferers.
Like I posted few times, lately, I have been suffering most of the nights with severe RLS syndrome due to augmentation and not only I could not sleep but my body got so agitated and exhausted that I did not know what to do with myself. Many of you tried to help me with their experience and now I would like to share with you what happened since Friday night.I don't know how I said to myself, let me see if homeopathy has something for restless legs, not really believing that it can help such suffering. So I ordered from Amazon, Boiron (the leading name in homeopathy) Leg Pain Relief (for Restless Legs-Leg
Cramps-Shooting Pain)for about $11.99 for prime members and one day later I received it and took it as they say in the directions and incredible but true, for the first time, in a long time I did not experience any uncomfortable feeling and I slept peacefully without any problem, taking also like usually my Lyrica plus Pramipexole that usually don't help but not this time, thanks to Boiron. So for 3 days now, thank God, I have only justified praise for this homeopathy medicine. Nothing to fear since it does not have any side effect, nothing to lose to try it and please note that I don't work for Boiron or any homeopathy website or anything like that. Before I forget it's called Zincum metallicum 6C and it comes with 2 other tubes (not for RLS) but use only the one for RLS (Zincum...) . On Amazon, type "Boiron for Restless Legs" and a box with Leg Pain Relief will appear and that's the one. Now it's has been only 3 days but I am so excited to feel "normal again" that I cannot wait to tell u about this. Now may be most of you know already about this in case I think I just discovered "America" and if you do already, no harm done, I am the one who spent time writing this and if it can help you, I will be as happy for you as I am for myself right now. Tomorrow will be another day and still hope that this wonderful result will last. write to me if you have any question I can answer about this. All the best to all. Alia22
I have to say I feel somewhat sceptical to this post - looks like a concealed advert to me, judging not only from the poor and non-idiomatic English, but the whole narrative. Sounds concocted. I may be wrong, of course - though it'll take some persuading.
Whirlwind, I appreciate the tip and will use it probably. I like to try many things till I find something that gives relief, even for awhile. Since you agree with what Pluto46 wrote, I sent you my answer to his comments. All the best always. Alia 22
in reply to
Hi Alia22!
If it make you feel any better I appreciate your post! Thanks for spreading the word about what gives you relief. That's what this forum is all about, anyway, isn't it? Helping others?
Regarding the language aspect: I am an American living in Norway. If I wrote a long post in Norwegian there would be mistakes. It is very hard to write/communicate in a foreign language, so I admire anyone (including myself - I hope that doesn't sound conceited) who can do that in a language other than their own. I speak Norwegian every day and man, is it exhausting!
in reply to
Alia22, I'm in 100% agreement with Jess3648. My hat is off to you. English is probably a second language for you and I understood every word, Very believable. You obviously speak more than one language and in the US where few Americans who never spoke another language but English sometimes have a hard time with that, you're doing great. And thanks for the info and clear directions for ordering.
Well if you are naturally skeptical and question everything and everyone, the problem is probably you. I wrote that with good intentions, obviously for not narrow-minded people who chose to mistrust. The world of a skeptic is a limited world. I mentioned in my comments that I don't work for Boiron or any homeopathy website and I meant it. I bought it at Amazon and I was very pleasantly surprised and relieved that it worked very well for me, at least for so far. I have no idea how long it will last but for the time being, I had a break from suffering for few days and hope it will be more peaceful days ahead.
This is not the first time I use homeopathy medicine but I did not know that homeopathy for RLS existed and that it did work for me. I was excited to share that with many members who gave me advice when I was in pain.
Now about my "poor and non-idiomatic English", you might be right. English is not my primary language. I am french educated but consider myself fluent in English. It will never be enough but I have no problem with that. Take care now!!Alia22
Don't take it personally people dill be judgemental as they didn't find it we all need help so thanks for advice
in reply to
Alia22, Hi Loved your response re skeptics. Yes, there are scammers out there but, in my opinion, there wouldn't be a sufficient $ return for them to waste time on this type of website. To use an american expression, "Not enough bang for their buck." Keep sharing. I am a skeptic and look for red flags. There were none in you post.
in reply to
Burmag, your kindness can change anyone's day for better. Thank you so much. I was accused of ulterior motives and I had to respond. I really appreciate that you expressed much better than I will that there is no point in this website to waste time on trying to scam people. Enjoy your weekend and I will be in touch again. Alia22
in reply to
Hi, Alia22, You're very welcome. I meant what I said. I'm new to this website too-joined August 15th. Many people like what I write and it always feels good to get positive feedback. But I have gotten feedback from 1 or 2 people who I now choose not to respond to. I think some people just have their minds made up and don't want to be confused with facts. A saying I like said by the ancient philosopher PLUTO is "Be kind. Everyone is fighting a hard battle." That is certainly true for people looking for answers on this website. It hurts when people are negative and don't have all the facts. I'm still learning this even though I'm 73. A friend made me a little turkey out of paper and a walnut. She gave it to me one day when I was feeling down over something someone had said. It is to remind me to "Don't let the turkeys get you down." Your posts help as much as you are being helped. So stay with us. There are many kind people here and I feel better after I sign off here. Looking forward to talking with you frequently-off to do errands now. Have a great weekend. burmag (my name is actually burma and g is my last name initial.Bye for now
it would be unusual for anything to help to give relief while you are augmenting. As augmentation would be stronger than any product or any med could over come it. Most people have to deal with the augmentation before they would find relief taking anything else. Just saying.
Thank you so much when I get some money I will try this .I don't worry about people being sceptic that's their choice me I'm willing to give anything a go if it stops the pain so much the better .xxx
Thank you for posting about this Alia. I haven't heard this product mentioned before. It is always fantastic to hear of remedies that bring relief and as I read your post I feel determined to visit Amazon and try the product.
In assessing the response to your recommendation you could bear in mind that there are many on this forum (myself included) who have tried different remedies following recommendations only to experience disappointment thanks to the pernicious nature of the ghastly condition. Consequently, there is a tendency to scepticism - I think it is a form of self-protection against the disappointment of false hope. Therefore, it would be great if you would continue to post with your experiences of Boirin Leg Pain Relief. I fervently hope it continues to work.
On a different note, as I have said before, I so wish my French was even half as good as your English. I think you have a lovely way of expressing yourself and I love your quip about discovering America.
It's always a joy to hear from you. Last time I printed one of your answers to a member and reading it, I realized again how informed and knowledgeable you are about this condition. Since my last correspondence with you I saw my primary doctor who checked (upon your advice) my ferritin (122) magnesium (1.9) and B12(707) and all is normal from reading the copy he gave me.
Now about what I wrote about the homeopathy for RLS and I was accused of advertising this item, reading it again, I was so excited to bring something to the table for all this helpful community that It sounded that I had some interest selling the product which is absolutely not the case if you read my comment to Pluto46.
You know the saying in French "trop beau pour etre vrai" (too good to be true), that's how I still feel about it as of today and still going. For the first time in a long time, I was able to take a nap for more than one hour. I still sound may be like I am selling something but how not mention it when I was not able to take a nap for 2 minutes and I had to get up because it was a struggle more than a nap.
I understand like you always mentioned that what works for one will not necessarily work for the other but lately I have been in a fight with Mr. RLS
trying more than the meds and not be passive relying only on my meds who don't work like before. I bought on Amazon before the RLS homeopathy I am using now, a cream with good reviews but it did not work for me and I returned it and they gave me a refund (only in America !!). Now I am going to try something for arthritis in homeopathy. In France homeopathy medicine is used much more than here in the US and Boiron is the leading brand.
Anyway, my next appointment with an RLS specialist in a big hospital is for September only.
If you don't mind I would like to ask you if one can switch from Lyrica and Mirapex to Ropinolol that apparently works for many members or how one switch from one medicine that does not work to another, especially when it comes to RLS medicine. From what I read in your correspondence with other members, I see that it's still a big struggle for you. I wish and pray that you can find something that can give you a break for a while. Hope to hear from u again when you are not too exhausted. Alia22
in reply to
Mr. RLS! I love how you personify the disease!! Maybe we should give him some traits. Let's see....grumpy, unhelpful, egotistical, naggingly persistent, devilish.
That homeopathetic cream you mention doesn't happen it be the Relaxing Leg Cream from Magnilife, does it? I was excited when I first got it because it really helped. Sigh... it doesn't work like before. I hate how things don't last!
I'm excited to hear you were able to sleep longer than you have in a long time! I hope it continues!
Alia, thank you so much for your lovely comments - my day is made!
Your serum ferritin is high which in some ways is sad because it removes the scope for hope that raising it will improve your symptoms but it is important to have high levels if you are planning to reduce/eliminate a dopamine agonist.
I am really pleased for you that you continue to experience relief with the Boiron product. This is particularly good as you are lowering your dose of mirapexin which is such a difficult thing to do normally. I never thought you were promoting it in any way other than as a product that you found helpful. I am planning to order some later though have experienced so many false dawns (I have tried numerous supplements, dietary changes, medications etc and always disappointment) that it will only be an incredibly pleasant surprise if it has any effect.
Ropinerole is another dopamine agonist (like mirapexin). It works in a very similar way to mirapexin but one is metabolised in the kidneys and the other in the liver (I can't remember which). In your shoes, I would not switch to ropinerole at this stage. It would simply be replacing one problematic medication with another. Because it sounds like you are augmenting, I would tend to move towards eliminating the dopamine agonists (very slowly) and taking a holiday from dopamine agonists for a few months before possibly resuming them again. You should find at that stage that a much lower dose of dopamine agonist is effective and you no longer have the troublesome breakthrough symptoms. The process of eliminating mirapexin (or ropinerole) is hard and it can be tricky to find the right combination of drugs to cover symptoms during the drug holiday but once augmentation has set in the symptoms are only going to get worse with bigger and bigger doses of mirapexin required to afford less and less effective relief. Sorry if I sound a bit like a broken record ...
I should be charged for all this info when I think that my neurologist charges so much my insurance for something she has no idea how it works. I was on Mirapex 0.75mg and like I told you I think, she wanted me to change to Mirapex 1.50mg and when I said I don't want to increase and she said I cannot help you, I let her send the new prescription to my pharmacy and as of today, never took it because I was convinced that what u told me was the right thing.
So, although I am taking Boiron for RLS, I am still taking like before 1 Lyrica 100mg (instead of 2/150mg)and Pramipexole 0.75 I did not change. So to keep up up to date as far as I am concerned, the "honeymoon" with RLS Boiron is still going and everytime I feel that my legs start to hardly budge, I say "the honeymoon" is over and to my delight, it's in my head only and as of tonight, it's like the energizer battery, it keeps going to my good fortune but I should not speak too soon, but I wish you also some break with some miracle natural pill that will work for you. These are tiny pellets (I think that what they are called). I take 5 of them under the tongue and they dissolve in 1 minute. I am supposed to take them 3 times a day but now I take them only twice a day, why ... I just decided twice is enough.
I wish the right "something that works" will come your way. Take care now!! Alia
The management of all pharmaceutical treatments should be effected under the guidance of a doctor. The usual premise is that the guiding doctor understands the condition, the treatment drugs and the interaction between the condition and the treatment drugs.
The difficulty for many RLS patients is that they are dealing with doctors who have little or no understanding of the condition (and often little interest) and although they (the doctors) are familiar with the drugs they are not conversant with the impact of the condition on the drugs and in particular the phenomenon of augmentation. It is therefore important for sufferers to inform themselves as fully as possible to optimise their interaction with the medical profession and their consequent treatment.
In a minority of cases, RLS sufferers are constrained to embark on their own system of experimentation to achieve a treatment that allows them to live anything like a normal life.
It's that time again when I am trying to solve an RLS problem to turn to you because I need help. I also see it's always one way since I never help you in your struggle with RLS.
Well, it is said that "God loves a cheerful giver" and you are that cheerful giver to many on this site. Your generosity of information is indeed the best act of kindness.
So I wanted to tell you that I had an appointment with an expert RLS doctor at one of the biggest hospital in New York City and one of the biggest disappointment to me. I waited a long time to have this appointment and when I saw him, he spent with me about 10 minutes maximum and I was telling him how much I suffer from RLS and I think I have augmentation since the medicine that was working is no longer working and I don't know what to do with myself when I have a very bad night. So he told me, I don't think you have augmentation, you need to come for a sleep study and before I can say anything or ask a question like, can I change for another med or can I increase Lyrica may be it will help he got up and took me to the appointment desk for a sleep study. He wanted the sleep study to be done in September and he will see me again in October, meaning I will be on my own until October, not knowing what to do to get some relief. On the spot I understood that these prestigious hospitals are may be good for serious surgeries but their physicians are there to give you test after test to bring money to the hospital and that was the idea of the doctor is more interested in the sleep study than having any discussion with me. All they know is "next" since they have so many patients to see. I told him that I did already a sleep study but a long time ago so he said you have to do it again. Sorry for such long story. To come to the point my question to you is, what a sleep study will tell him that I don't know already, that I have RLS, I already know that for many many years. I really don't believe in this sleep study so not only I am going to cancel it but write to him to tell him that he was paid very well for a full visit not for 10 minutes visit and I will call my insurance to tell them that he did not do anything.
Meanwhile, what I did (being desperate) is increase on my own the Lyrica from 100 mg to 150 mg and did not increase the pramipexole and it seems to work for the time being.
And if you are asking what happened to the homeopathy medicine, it was still helping me a lot but I finished the tube and I had to order more and I just received it but since increasing the Lyrica and is still working, I will stop the homeopathy till I really need it.
I will be very surprised if you can read this whole "bible" I just wrote to you, so read whatever you can and any comment from u will be always welcome with my big thanks. I did not visit the site for awhile now but hope you are doing better at least.Hope also that I entertained you with my bad writing. Bonne Nuit!! Alia22
p.s. I don't know how to send a message so I am sending a reply instead
Hi Alia, I am so sorry for delay in replying. I am moving house and only go online intermittently at moment.
That was a truly awful experience with the sleep consultant. You are absolutely correct - a sleep study will reveal nothing you don't know already - a sleep study is largely redundant in diagnosing RLS. Sounds like you did the right thing in getting rid of him. If you go to the US RLS site, rls.org, they have a list of approved experts in RLS. They may have someone in New York.
I am so glad the increased gabapentin is working for you and you have resisted increasing mirapexin. I hope that continues. I would have thought you could increase the gabapentin again if you needed - your dose still sounds low to me (but obviously I don't know your medical history). It sounds like you need to focus on searching out a good RLS expert.
Grammieis quite correct. I wrongly said gabapentin - I meant pregabalin (Lyrica). I don't know about the dosage of gabapentin. I know about Lyrica/pregabalin better but only because I take it myself. That was stupid and careless of me.
Many thanks always. Wishing you the best in your new "home, sweet home" without the RLS following you around. Alia22
in reply to
Hi Alia22,
I know your post was specifically geared towards involuntarydancer, but can I chime in here? I am sorry I haven't been following your post. I meant to, but forgot to click "follow post" when I read your initial post. Therefore, I am just reading this now.
Man, I am SO sorry about your disappointment!! That was not cool of that doctor to do, so I am glad you got rid of him! I want to congratulate you on taking charge of your own health! Sometimes we need to do that in order to stay alive!
I will now "follow" this post so that I will get notifications of new replies to this thread.
(BTW, to send someone a message click on their username and "message" on the top right)
I was on mirapex as I have mentioned and stopped it cold when I put on so much weight ,I had no side affects which shows once again we are all different.It may be I was not on it long enough but the weight gain was appalling.
Retren, u are right, the problem with Mirapex (among other problems) is that you gain weight, it's written in the pamphlet that comes with it. I happened to me also. I was slim, no more now but what to do?? Be well Retren!! Alia
I was on Gabapentin 1600 x 3 a day for RLS for a long time, along with a cocktail of other drugs for Arthritis and I put on loads of wait. After reading one of the replies on this site and showing it to my doctor following a knee replacement I came off Gabapentin and switch to Oxycodone which is working well and as a bonus I have lost 1 stone 7lbs, which is great for my knees. So I hope that it will be the same for you. Wishing you well and keep posting how you are getting on with the Homeopathic supplement, it's always helpful to know there is something else to try when something else stops working.
PS. I was also sent up to a sleep/neurological clinic up in London because of my chronic RLS which caused me terrible sleep deprivation (days and days with no sleep at all) and I was doing weird stuff around the house and not knowing that I had done it!! As the Oxycodne has stopped me doing the weird stuff he didn't seem to think it necessary to be wired up at the moment and just gave some advice about sleep etc. Plus I bought myself a FitBit to record my sleeping pattern (what there is of it!!) so he can see it when I see him again early next year. I can deal with the lack of sleep better now that the RLS is giving me some rest.
Smiler, I am like you. I don't stick to one thing if it stops working. I will try few other things till I find a solution. It's never going to be the definite solution but if it gives a break for awhile, well I will use it. I learn on this website that the solution is different for each member. I feel for you for what you are going thru and happy that you have now a little rest with your RLS. Hope that the good sleep will follow. Have a great weekend and thanks for writing, I always appreciate. Warm regards. Alia22
I must have be n like the flight of the white heron something rare and wonderful. I didn't,t mention the compulsive shopping as I like to shop anyway but the stuff is really quite disastrous.
Hi how are you ?? Strange, I never had any compulsive shopping.
in reply to
Hi, Alia, I was very interested in the side effect of weight gain re Mirapex. That was the drug my primary care physician prescribed; I was only on it for a week when I had an allergic reaction that landed me in the emergency room. I understand many rls patients are helped by prescription meds but for me I try to take as few as possible. It seems as you get older and each doctor adds his own ideas about medicine to the list, pretty soon you realize you're taking a laundry list of stuff. This happened to me and I couldn't be sure what might be interacting with what. So about 3 years ago, I decided I wanted to get off as many prescriptions as possible. I told my cardiologist and he listened and worked with me. He was very open to my input. Started by changing to a plant based diet and over 2 years lost 70 pounds. Wasn't trying to look 25 again (though that would be niceLOL) just wanted to feel better, get off the meds and stop spending so much money on prescriptions. Got off insulin, statins, blood pressure meds, asthma meds-to name a few. I'm rambling but the point is I sure don't want to gain weight from Mirapex. So for me all the non-med info is helpful and I'm thankful to everyone's informative piece of the puzzle. I would like to have a pain pill to take every so often-just to have a pain-free day occasionally. But I haven;t asked for one because one of Trumps projects is to tighten up on the opiod laws and it worries me to start something helpful that may only be short term.
in reply to
Hi, how are you ?? To answer your question about Mirapex, yes as far as I am concerned I gained about 10 pounds. I told my doctor and she told me that Mirapex makes you gain weight. It's like I was always hungry. Now less hungry but the weight is still there. It does not show really because I was not heavy. I would say that Mirapex is efficient for RLS as you know. I take 0.75 mg plus Lyrica 150 mg every night. My doctor wanted me to increase Mirapex but I did not listen to her and increased Lyrica instead from 100 to 150 and it did work, till when I have no idea. So, do you take now Mirapex or something else?? A plant based diet made you lose 70 pounds ? What exactly is a plant based diet? I suppose you don't eat meat at all ?? Well if it works, that's what counts.
Sorry, I took time to respond but I am not often on this site because I am busy with other things. Hope you are on your way to a better health with all your effort. Not easy at all !! Warm regards. Alia22
I try to stay away from any med that can cause weight gain. As I'vementioned before I've lost enough weight in the last few years-very slowly, no fad diets, which has enabled me to complete;y control my diabetes with diet alone for over a year. No insulin, nodiabetic pills and completely normal labwork, For those of you out there with diabetes you know this is a big thing. Oddly enough-or perhaps to be expected considering how unhealthy hospital food can be- the only timemyblood sugarstarts to creep up is if I'm in the hospital and eating their food. So I don't. I bring my own; come armed with raw nuts, whole fruit, etc. The nurses go berserk and say I can't do this but I get my doctor to write an order giving me permission and it'smy call. Again, my usual refrain, even though they have hospital policies and rules, some of them are for staff convenience and do not meet my treatment plan needs. One size does not fit all. I also bring my own supplements, bloodsugar machine, and cpap. I'm sure they hate to see me coming.LOL. But my goal is to leave at least as healthy as I came in. Be your own healthcare advocate, though I know it can be a struggle at times. If you're too sick have a family member or friend advocate for you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
2 months of RLS and Alpha Lipoic Acid worked last night
RLS temporary relief suggestion 
Taking iron for RLS; Requip better than Mirapex?
Hi..RLS..another night.
