If You're Thinking of Switching Out Your DA for Lyrica...

Think twice: rxisk.org/kicking-lyrica/

The same is true for Gabapentin. In my personal opinion and experience you want to be able to gauge your RLS on a day to day basis and take meds accordingly. Besides the horrors of withdrawal, these two substances do not give you the opportunity to gauge your RLS. Everyone needs an emergency med such as tramadol, oxycodone, mucuna or ferrous bisglycinate and sometimes that emergency med is taken every night, so be it. But you don't take it until you feel the RLS. That's how you keep your meds to a minimum. And the ferrous bisglycinate should always be the first emergency med you try. If that doesn't work you go from there.

I've heard lots of stories of people throwing away these emergency meds or needing way less when they stopped taking statins or HRT or antidepressants or sugar substitutes or antacids. 1.0mg of melatonin will give me restless BODY for 4 to 5 hours. What other condition in the world is subject to such small swings? By day - no RLS, by night - RLS. What the heck is that all about? It's probably that small drop in available iron or dopamine (or both) that happens at night that causes the symptoms of RLS as has been discussed on here. Why do we want to take 100s and 1000s of milligrams of a drug that doesn't even address either of these two things - iron & dopamine.

Unfortunately, unless you're bed-ridden, RLS is one of those conditions that requires experimentation. Graham has had amazing results with FODMAP diet and many others. Don't just pop pills prescribed by your doctors. Your doctors are the ones who led you down the path of the DA nightmare and now they're leading you down the path of the Lyrica nightmare.

The ability to reply to this post has been turned off.

66 Replies

oldestnewest
  • You recently posted, rather insultingly,that withdrawal from dopamine agonists was a mere "blip" and that iron bisglycinate would solve not only RLS but also any withdrawal from da's.

    Now you are posting about the "horrors" of withdrawal from Lyrica and gabapentin.

    You need to accept that you are one of the lucky people for whom iron bisglycinate has worked but that it DOES NOT WORK FOR EVERYONE.

    I stopped gabapentin about 5 weeks ago and had a day or two of uncomfortable symptoms but nothing compared to withdrawal from ropinirole.

    Most of the people who come to this website seeking help and support will need to take meds for their RLS. Iron and diet will not work for them.

    So please accept that everyone is different genetically and will react differently to meds, supplements and diet.

    I can do without your scare stories quite frankly so please desist.

    I will not be responding to any reply you make to me as I know from your posts that you are relentless in your views.

    By all means continue to post about the wonders of iron, but point out it is merely your experience and that you are aware it does not stop RLS for everyone.

    Rant over

    Jools

  • Well that's a good point. I know that a bio-available form of iron will greatly help when tapering off of the DAs (just ask Bganim) but I'm not sure if the iron will help when tapering off Lyrica. According to the article it's much easier to taper off Gabapentin than Lyrica. Anyways, for anyone with RLS who tapers off the Lyrica, the iron is definitely worth a shot. It's unchartered waters as to whether it will help. I say go for it.

  • Are you going just on this one article?? I echo everything jools has said. Do you have PERSONAL experience with these meds, or are you just trying to scare the crap out of people here? RLS meds work BEST when you take them before the symptoms start. For my personal experience, and many others, once it gets going it is harder to stop. That is why we have maintenance medications. Very tiresome, your scare tactics. I personally have been on both of these meds, they were not the meds for me, but I had ZERO trouble stopping them. Do you think the more often you type this stuff over and over is going to make more people agree with you? NO. It is working just the opposite, and is getting the exact opposite reaction that you want to get by posting stuff like this.

  • I think you should google it yourself and present us with your findings.

  • Thank you for your posting, Jools.

  • Like it or not, Lyrica is the new DA on the block. Don't shoot the messenger.

  • Lyrica is NOT a DA. It is approved for Fibromyalgia pain.

  • Then why are RLS specialists prescribing it? Why are people on here taking it. I'm with you, down with Lyrica....boo, hiss!

  • Lots of meds are used for many things "off label" Surely you have come across this in your "extensive" research. Just because it is not approved for RLS, does not mean it does not help SOME people. Dopamine meds do not work for a lot of people and neither does iron. Different strokes.

  • Did you read about Vonnie's experience with the Lyrica? Your welcome.

  • Well said rant. Jools.

  • Good rant, Jools, you saved me a lot of typing!! :)

  • So because of your dislike for me you're willing to endorse a drug that can only hurt, not help people with RLS.

  • I am NOT endorsing this drug, I am saying there is more than one side to it. I do not dislike you, I dislike the presentation of your information. Stop.

  • I will never stop. I did not post to you once. Then I see 10 posts from you OUT OF THE BLUE. Comment deleted - bickering - K)

  • you have posted to me a zillion times. AND, you posted incorrect info on me, saying I was on a morphine pump. NEVER have I been on a pump of any kind, so don't lie to me. I have a photographic memory. Of course, it was under one of your other 7 screen names that you did that, so you may have forgotten that by now. Again, have a good night.

  • I've been accused of using scare tactics in order to get everyone on iron instead of drugs. I stand falsely accused. Please note that I have never posted anything about opiate withdrawal or withdrawal from other anti-convulsants such as the benzodiazapines. Nor have I ever posted anything bad about kratom, cannabis, mucuna or the dozens of other things people have tried that might lead to withdrawal. In my post I recommend having a pain killer at your disposal. I think it should always be there. It's a rescue med. Lyrica is not a rescue med. I don't like what I'm reading about it. It scares me. And all of a sudden sleep doctors are prescribing it for RLS as they did the DAs - meaning not really knowing the long term outcome.

    I think it's highly unprofessional when I am falsely accused of something and it is endorsed by those who administer this site. My intentions were well meant and not self serving. I think that fact is utterly clear from my recommendation of pain meds...following a trial run of iron of course :)

    I wish those who administer this site would comment instead on the other items I mention in my post. Why RLS at night mostly? How the heck much does our dopamine and/or iron levels drop at night such that our RLS goes from 0 to 10 in a matter of hours. Really what we're dealing with here is a matter of a few small molecules of dopamine and/or iron. It's like I'm comfortable at 72 degrees but then boiling up at 73 degrees. Excuse me if I'd rather turn on a fan than jump in a bathtub filled with ice. There's gotta be a better way to treat RLS than 100s of milligrams of Lyrica. Oh and by the way, allow me to repeat, don't turn on the fan when you're comfortable, you'll just burn out the motor faster that way.

  • You have never said anything about opiates? Excuse me, but look back at your posts and replies. I think you have forgotten. maybe it was under some of other screen names, hard to keep track, since you have had 7 of them at LEAST.

    You have done nothing but criticize me and others who depend on those meds to keep our sanity and to keep RLS at bay.

  • The admins do their BEST to keep all information balanced here, and it is RUDE to criticize them. I will say again, the more you type the same thing over and over, does not make it any more true. Out of 5,000 people here, there are very few who get relief from the iron you push all the time. Some people do NOT need iron therapy and it is dangerous to take it if your levels are fine.

  • Taking ferrous bisglycinate at night has nothing to do with our bodily stores of iron. It is a matter of getting some iron across the blood brain barrier when we need it most. No RLS, no need to take the bisglycinate. No RLS, no need to take pain meds.

    Iron = Pain med

  • No, it does not equal pain meds. For goodness sake. AND, I have many other things going on for which I need the pain meds. But, you know that. Generalizing that is not helpful to anyone. There are a lot of reasons people need pain meds. Lyrica is approved for Fibromyalgia. Gabapentin is an anticonvulsant that is also used for nerve pain, hence an off label use. Opiates are also used for RLS, which is, of course, an off label use, but recommended more than the dopamine meds by many specialists. :)

  • Leave the Admins alone. they are here to make sure the forum runs smoothly and keep some people in check, they also offer support to those who are in need. if they dont comment on YOUR posts, means they have nothing to say. Not everyone comments on your posts. Some of us just skip past them. :P

  • You don't like me or the fact that iron has helped NUMEROUS people on here. Sad

  • Also,sad that you will not admit that many more people are helped by other meds and other supplements. If it works for you, great, but there is no one thing that works for everyone, and that is the bottom line which you seem to keep missing.

  • I'll admit that if you will admit that all of our brains are anemic.

  • I am not playing that game. Iron is NOT the answer for all , in fact the percentage is very low. have a good night.

  • And many it hasnt helped. And i was commenting about the good Admins on here not the flipping iron, i think my ferritin level has shot right up just by an overload of iron posts. :P

  • More to come, many many many more. Might as well enjoy the ride or bail.

  • I will just sigh and skip past them. I am here to stay, been here since this forum started.

  • If you can't beat them, join them. I'm not sure where InvoluntaryDancer found out about the ferrous bisglycinate but if it was from here then it was likely from one of those iron posts you dislike so. Had I not been so persistent then she and Bganim and RLSGill might not have the relief they do today - au natural. It'll be ok Elisse, you'll survive.

  • Oh i have tried the iron, it did nothing for me, so i am another one on the list that it didnt work for. Oh yes, i will survive and i AM surviving. What you dont seem to get is, we are are not saying the iron will not work for maybe some people, BUT it will not work for everyone. If you just could say in your posts OR comments, that SOME people find they get relief from the iron you recommend taking, it would make life on here much happier. It that so difficult for you to say..! ?

  • I do say that. Shall I dig them up

  • You know what, I'm not bothering to look at my posts. I know I'm gracious and never condescending to anyone about anything. The second half of this string has been deleted because the comments were not supportive or helpful.

    Kaarina - volunteer

  • now that is RUDE, tredlight. See Involuntary dancer's post below. hmmmmm?

  • Ah here! ... my name in vain ... I have never said I get relief from ferrous bisglycinate. I DO NOT get relief specifically from ferrous bisglycinate.

    It is true that I attribute an improvement in my symptoms to getting my serum ferritin to a much higher level. I did this at the suggestion of Dr. Buchfuhrer. To do it, I take an iron supplement. Sometimes I take ferrous fumerate and sometimes ferrous bisglycinate. The only reason I would take bisglycinate is because I don't need to take vit C with it.

    Furthermore, I take all sorts of ungodly substances when it comes to my rls - I would take Lyrica by the bucketful if it did anything for my rls. Indeed I would probably take it even if it didn't just because some people recommend it, if it wasn't for the fact that I get nasty side effects from it.

    Please don't be nasty to the administrators ... they are great.

  • Double sigh. This is just dumb, and you may have helped 2 or 3 people, which is a good thing, but don't lie and say "many many", it is not true. Do you think I do not talk people in private? You do make me laugh, tredlight.

  • Stop messing with us. As a group we are here to support each other and share knowledge and experience in a kind and thoughtful way. Your attitude is not helpful in any way and the information you offer is questionable. RLS can sometimes drive one mentally crazy and a calm mind is a wonderful help if we can achieve it. It would seem that you are determined to upset members on this forum by continuing the discussion. Please stop.

  • Hi funnyfennel, the person who started this thread left the forum some time ago.

  • When I first started with RLS symptoms a couple of years ago I read the various postings by a variety of authors to see if I could find a "Holy Grail" of treatment but alas to little avail. I have had helpful advice from Dr Mark and have the book " Clinical Management of Restless Leg Syndrome co-written By him and others. I have also read many of the postings on the RLS help web site. It is clear that we, fellow sufferers, are impacted differently. What works for one will not work for someone else. So I value even the postings I disagree with in the hope that I will find the elusive certain treatment.

  • True, kind of. RLS is about the same, but like type 2 diabetes, some people tend to have higher blood sugar levels than others. Some people with RLS probably have worse and fewer dopamine receptors than others at "baseline." Of course everyone's dopamine receptors will be desensitized by the DAs.

    What's different are things like the condition of our spines, our age, other meds we have to be on that are triggering a worsening of symptoms and sadly other conditions and diseases we may have that worsen symptoms, such as multiple sclerosis.

    I hope science never goes down the road that everyone's RLS is different because then we're really messed up. It's only because RLS is so similar in everyone that so much progress has been made in understanding it.

    A headache can have many sources. Type I diabetes will always have the same source. RLS is more like diabetes than a headache.

  • Firstly- thanks for the interesting link, tredlight- and all your other posts.

    I might not agree with all of them- but I'm free to make up my mind. And they are no more "out there" than some cookie ones we've had here!

    One thing to remember with rls sufferers is that we are all unique and seem to respond to medications in so many different ways. Therefore there is no one solution for everyone.

    We all have to proceed through trial and error- navigating our way through Dr ignorance , Dr Google , other people's experiences and the advice from sites such as " rls-uk.org" and "rlshelp.org".

    The ignorance and hysteria surrounding opiates is truly frightening. Especially the confusion and fears about dependency and addiction.

    This is not helped by the seemingly helplesness or unwillingness of officialdom and the medical profession to scientifically analyse the realities.

    Just on the point of using as little medication as possible- I would agree fully. However, when I started on oxycontin , I naturally started on 5mg at night. Didn't work! I moved up to 10mg- success- but had odd feelings during the day- mild withdrawal , but enough as not to allow me function properly. So I tried 5mg in the morning with no success. I am now on 10 mg twice a day with 99% control.

    I have since discovered that it is better to be on a continuous even dose of any of these opiates to better avoid addiction.

    I love you all on this site - yes- even the ones I get annoyed with betimes!😉

    So be kind with each other- we all want the betterment of fellow sufferers- that's why we are here!

    Cheers 😎

  • But, but, I'm the know it all. Love you too.

  • Ah no! You're the little terrier that goes digging for all the hidden bones. (And sometimes reluctant to let them go!)😂

    Keep the head up!

  • True, madlegs we ALL have the same goal, it is how it is presented. There are ways to impart information without scaring the crap out of people. I am glad to hear your oxy controls your RLS 99% of the time. Same with my slow release morphine and short acting Tramadol. It is a rare night I have any RLS at all and am not about to change the plan that took me and my doctors years to come up with.

  • I'd say you scared the crap out of Bganim. I pulled her back from the edge

  • If I understand what you and this article are saying, I totally disagree with you and the article. You should not wait til you have symptoms to take the meds! They take time to get into your system and getting immediate relief is not going to happen. And, taking an iron pill as a remedy at that point is not.

    Just as an FYI, I take Gabapentin at the same time every nite (I set an alarm) and my doc recommended that I don't get in the bed until I'm very sleepy. I have been sleeping like a baby for the last 2 nites since he told me without so much as a twinge.

  • I cannot understand the article. I cannot see what it is based on. I took Lyrica for quite a while last summer but I didn't like the side effects and it made no impact on my symptoms so I stopped (I titrated down but over a very short period of time). I restarted it in the Autumn in the hope that it would counteract the all night alerting I was experiencing and after a time I stopped it again. On neither occasion did I experience ANY difficulty coming off Lyrica.

    TO put it into context, over the last year I have also come off a d/a (admittedly a very high dose of daily pramipexole) and also Oxycontin (twice - the first time after taking 30 mg per day for a period of at least two months). Oxycontin was tricky to get off and I experienced some very unpleasant withdrawal symptoms but it was nothing like as tricky as the dopamine agonist. There was no comparison between coming off Lyrica - no withdrawals, no problems with dependency, no difficulty at all - and coming off pramipexole or even oxycontin.

    Why, if it has a positive impact on rls for some people, would they not take it? If it doesn't work, it is easy to come off. It doesn't seem to cause augmentation. All side effects cease once one stops taking it. What is the problem? Is it somehow beneficial to suffer through the awful symptoms of rls rather than take a drug that helps to minimise them?

  • You came off the Lyrica while on opiates. You had nothing while tapering off the DAs.

  • Read people's comments connected to the article. I can understand what you're saying if you're talking about people with FIBRO, but to your own admission the Lyrica rarely provides immediate relief and rarely provides relief if taken alone. So really what's the point. It's a BAD drug, this is one of dozens of articles I have read about it. The DAs desensitize the receptors, from what I can tell, this stuff desensitizes your entire brain. If you want to kill a fly use a fly swatter not a hammer. 100s and 1000s of milligrams of lyrica is a hammer. Hence my name, TREDLIGHT ly

  • Everyone has their own thing to help their RLS. period. We do not do "watches" on people who are coming off of Lyrica or Gabapentin.

  • You will

  • After more than 2 decades, 22 years to be exact and over 10,000 people over the last 2 decades, not yet! I am not holding my breath, but thanks for your singular opinion.

  • You're not a doctor, no one should be looking to you when they're suicidal, nor should you allow them to put themselves in your hands. They need to be hospitalized.

  • Lovely! - Tredlight - ly I like it

    ... except when it comes to recommending ferrous bisglycinate :-)

  • One time about six months ago, and probably one or two other occasions, I mentioned that I preferred keeping my iron stores low and I was shot so full of holes by "certain" people on here that you would have thought I just robbed a bank. Just yesterday I practically begged Graham to only take the iron when needed. I know his stores are around 100 like mine. And I have continually told people that I consider iron an emergency med for myself. Hint hint. Meaning that even if the iron works for them, don't get complacent. We all have to figure out a way to up-regulate our pathetic, deformed receptors. Lyrica will not do that. Tramadol will not do that. Iron will not do that. What do you think about the idea of taking short acting dopamine antagonists by day?

  • Tramadol is my short acting "emergency" med. Your iron certainly is not for me. And, I have tried every scenario with meds over the last 22 years.

  • By the way, this web site, just by the name is anti med. So consider the source and what their agenda is. A person cannot just look for web sites that support their thoughts, again you are not looking at both sides. This web site immediately asks for bad information, not neutral information, but their agenda POPS off the page. period.

  • I take Lyrica without any problems

  • Very glad it is working for you. Probably within prescribed doses it is a perfectly safe substance. Low hundreds? Like the opiates and iron, all things in moderation. Right now some combination of those three things are giving people a good night's rest.

  • I will agree that RLS treatment is a lot of experimentation, or "trial and error". Do you really think most of us went running to our doctors decades ago and said "Give me pills"? NO, I tried massage, acupuncture, tens units, physical therapy which I still do, iron infusions, and so on. I have tried all the dopamine meds, Lyrica, gabapentin, and so on, and nothing but the pain meds work for me, and they are fast becoming the first line treatment with the experts and researchers (see your favorite web site at Johns Hopkins) and I refer you back to the studies that Dr. Earley wrote his papers on, one was an 18 month study on iron infusions/ferritin levels, and the other was a PROPER study on pain meds, also for 18 months. The statement you make below that "iron=pain meds" is so not true for most of us. For you, I GET it, you love the iron. I did elimination diets for migraines AND RLS. There is literally nothing else for me , or a lot of us to try. So, again, will say I am very glad that your special iron works for you. If I personally waited for the RLS to start before I took any meds, it would take me all night to stop it. It is highly recommended that most of the meds used for RLS must be taken before the RLS starts, so to use them as maintenance meds. If you are an epileptic, you do not wait until you have a grand mal seizure to take your med, you take it on a schedule. ALL of the RLS specialists say to do this. Once the RLS gets started it is much harder to stop it. I have found zero food triggers for me, except for alcohol and I have not had a drink since I was diagnosed and found that was one of my triggers. But, it worries me that new members may see your "just take the iron" posts and go out and start that without consulting with a doctor. Too MUCH iron is dangerous, and one must get the appropriate blood tests done first. So, you remark "Don't just pop pills" can apply to some people. But if you think people like me and many others here just started "popping pills" before we tried many other things, you are assuming way too much. :)

  • Couldn't agree more!! I've been down the gabapentin and other ' heavy drugs over the last few years. The side effects were so much worse even than the actual RLS!( or Peripheral Neuropathy- they can't seem to make up their tiny minds as to which,or both , that o have!!!). Eventually I refused any more of these drugs. Although I do have some pain in feet and certain numbness of the toes during the day , I ONLY ever get the burning unbearable pain in my lower shins after being in bed for about 4 hours. So why take something to act on your body ALL day. When I am up and active I don't need such powerful drugs, which anyway, must be bad for my body , in general terms. I'm constantly amazed that the medical profession AND the drug companies have not yet come up with a suitable alternative, todate, to my knowledge anyway !!! There are so many of us sufferers that need help.

  • Thank you for sharing your story. I agree. In terms of RLS, I like the drug you take only as needed, because it is mostly a night time condition. And for you it sounds like the PN is sometimes painful, sometimes not. And even if you need that drug every night, such as a pain med, then so be it. I don't know if you saw it, but I posted another article on Lyrica and in it someone recommended alpha lipoic acid and taking a vitamin b supplement. Inadequate b12 can be involved with PN supposedly and I read that specifically b3 is good.

  • Since this thread appeared on the news feed I decided to read it.

    O.M.G!!! Counselling, anybody?

  • I am awake at 3:00am or 4:00am every night (morning) as I can't sleep because of pain in my legs. My family doctor has prescribed numerous pain killers, and now he prescribed gabapentin. I took It for 3 days and on the third day I fell 3 times. I just lost my balance and went down. I stopped taking it and I rely only on Tylenol which I have been taking for 6 years. It gives me some relief but I am in constant pain as I also have back problems from botched surgery. Nobody told me there was so much pain connected with PD. I must have bad doctors as I have had PD for about 17 years and still don't know what to expect. Is it normal to have so much pain with PD?I have involuntary movement in my feet and I walk very slow but I really don't have tremors or any of the other symptoms that I hear about on this group. I am curious about the pain. It seems to come from spasms and cramps in my leg muscles.

  • Hi patsysr

    I wonder if you would be better to post on the Parkinsons Movement community, where I see you have posted before. Unfortunately you have added your posting onto a very long old thread. If you suffer with RLS it may be best to start a new one.

The ability to reply to this post has been turned off.

You may also like...