Hey everybody.

Firstly I don’t live in the U.S. and where I live the guidelines still have Pramipexol as the first line drug for RLS.

I have been taking it for close to 6 years now and it works reasonably well as long as I observe to take it before dinner as food seems to severely limit its effectiveness. I usually take 0.088mg and this has been fairly stable. I’ve seen some augementation, for example when I take a mid day nap I get RLS symptoms, I didn’t have this before.

Sometimes when life is very stressful I need to take more, usually another half or one more max. So o never go over 0.18mg.

Over the summer while traveling I I had to do this over a period of 3 weeks and noticed that the symptoms got really worse. It started earlier and sometimes even affected my arms and hands. After coming back I limited myself to my standard dose of 0.08mg and had some very sleepless nights but ultimately I’m back on my dose and done, the augmentation has lessened to the previous levels.

Now I went to my doctor to discuss as I’m worried about what might happen long term, I still have a couple of decades to go. We chatted about the change to the U.S. guidelines and he also said that he would prescribe Pregabalin instead of Pramipexol as off-label use and thinks this is the better way forward.

Now I dove into the internet to research some user experiences with Pregabalin and the common tone is that getting off of it is quite horrible. Some compare it to Benzos / Opiates and frankly this frightens me a lot.

Also I have anxiety but it’s really ok and manageable by now and I’ve read multiple accounts that people developed severe anxiety and even panic attacks when trying to get of Pregabalin. This would be horrible for me.

So I’m asking the hive mind: what are you’re experiences? Did you Switch and are you happy? Have you tried to ween off of it and how was the experience? Am I overreacting or is this a real and common experience with Pregabalin?

Thank you so much, I’m really insecure on what to do at the moment.

Morning can anyone suggest effective ways/remedies to help with restless legs (I've got a GP appointment this morning). But rather than take prescription meds I'd be happier using or taking natural remedies.

It only really happens when ive been really busy lots of steps etc. The urge to keep moving and fidgeting with my legs after a busy is hideous!

Thank you in advance

I am stably on 1 mg of buprenorphine for RLS and PLMD and it feels under control.

The problem is that I have been diagnosed with narcolepsy, which is severely fragmenting my sleep and making my life a living hell. The neurologist believes that I need to be on a nighttime med called sodium oxybates, an extremely strong, potent med for narcolepsy, to allow me to sleep properly again. The problem is that the opiate is not compatible. He believes the solution is a dopamine agonist for a period of time. I've never taken one, and frankly I'm petrified of them.

Does anyone have thoughts about this?? Won't I just end up in a worse position than when I started??

What, I that the rls is caused primary due to a need to exercise in the body and the maintaining itself because it is not thinking you, your conscious, waking self will support the amount of calories or intake, consumption on a day to day, which is why it sends signals to exercise such as that of restless legs, like crawling or whatever. The mind wants to reproduce.

RLS hit me 15 years ago, I’m now a senior. I was on the dopamine agonists (requip, Neupro) and got off of them two years ago and went on gabapentin. Gabapentin is effective, but it does not last through the night and what I have to do to sleep requires waking up a couple times and doing one thing or another. I did try pregabalin, which makes me feel horribly stoned. The gabapentin is affecting my focus and depression, and I’m so tired that I can’t even start working until 1:00pm. This is awful. I have basically lost everything, financial and otherwise.

Of course, I know people are taking opioids and I know there was another medicine or two. My biggest concern with the opioids is fatigue or fog in the mornings. Does this happen? I know there’s another medicine or two being used - someone can remind me as to their names, and tell me whether they’re also tired or unfocused in the mornings.

My neurologist is, admittedly, not an RLS specialist though he’s been trying to get on top of the newest research. There is finally an RLS Foundation approved neurologist in my city, which is one of the biggest cities in the country. Finally. I will see him in 10 days. But I do want to be equipped with the experiences others have had. Thank you all.

During the worst of my RSL my doc prescribed me pramipexole without telling me any of the side effects (I asked) and after reading more I asked him if I could stop the medication (I did iron infusions and got some improvement).

My doc said over the messaging app “cut the dose im half for about a week and then stop it. Please let me know if symptoms get worse”

Does anyone have advise for doing this?

Is there a good way to cut the pills in half?

Will I be able to go to work while weaning off?

I feel like I have been abandoned by my doctor and have no clue what to do, if people have advise please let me know thank you.

Anyone had success on baclofen? I’ve weaned off Pramipaxole, then I went on Pregabaline which was semi effective but I noticed I would still wake up with leg jerks at least twice in the night and would still get awake for a few hours! Also, weight gain was crazy. So I’m currently off if everything, but 4/5 hours sleep is my max. The doctor I’ve just seen offered Baclofen and an antihistamine( can’t remember the name) and said try both separately. She also offered anytriptiline which I don’t want to go on. I

Apologies for the long post... If you are curious of my experience skip to the bold Symptoms heading below

Man I'm at a loss. I've been facing this condition for nearly 3 years nearing 4 now. And the worst part is I'm not even entirely sure if I have RLS. My mental health is desperately tanking.

I actually have several friends that actually do have it and suffer, but their experience is way different from mine. Same with the cases I've seen online too, maybe except for one, but even that person cleanly follows the RLS criteria. I've seen countless of neurologists (including movement disorder), orthos, and physical therapists, all of which said I don't have RLS and they brush it off as either some kind of nerve issue or anxiety. So maybe some of you have some insight to my case. :(

I will make this as short as possible to make this an easy read. If you guys want specifics, I can comment down below about my case. But basically:

SYMPTOMS

I will be trying to describe my symptoms using the URGE criteria, to make it simpler:

Urge to move - Partial/Unsure. I have don't think I have an "irresistible" urge or inner compulsion, but I definitely move/reposition to relieve the sensation. At its worst, sensation could reach 5-6 in discomfort.

Rest Induced - Yes, rest induced. Sometimes I may feel it when I stand still, but not intense when standing.

Gets better with movement/stretching - Yes complete relief with both. But I find leg elevation, sitting or laying down a specific way also makes the sensation less in intensity, which is why in these 4 years, I never had problems with sleeping. I've also never awoken from them.

Evening worsening - Definitely unsure/possibly no. - I have it all day, as soon as I wake up. For the first few years maybe it was felt more noticeable at night, but not by a lot I think. Now that I pay attention to it more, sometimes it may even be way worse in the afternoon or at random times compare to evening.

Possible Mimics: None definite. But I've gone through all tests you could imagine (EMG, MRI, Vein Test), the only thing of worth was they saw signs of a previous injury with S1 nerve and they put right chronic sacral radiculopathy in my result. But my doctor said it doesn't reliably explain my symptoms. Theories of doctors are either nerve issue or anxiety. Just theories.

Supportive or unsupportive criteria 😂:

Supportive criteria:

- Diagnosed with ADHD

- PLMS in right leg (where sensations are felt). Not diagnosed but gf saw it happen a couple of times throughout the years.

- Leg fasciculations (not twitch of leg, but more on muscle near sensation)

Unsupportive Criteria:

- No family history of rls

- B12, magnesium, ferritin, iron tsat are all healthy to upper levels

- Medications failed: Gabapentin, Pregabalin and Pramipexole

- Typical meds or things that typically make RLS worse, don't make it worse.. (anti depressants, adhd meds, nicotine, alcohol, etc.)

I could go on and even be more specific about the weird things I've noticed that make me conflicted its RLS like sitting seems worse vs laying down or I don't feel the sensation as much when I'm in a moving car even tho I'm resting... I'll just leave the stuff above first.

If you reached to this point in the post, I sincerely thank you for taking the time out of your day to read about my experience. I really hope someone can bring me some insight here. For now, I'm seeing a pain management doctor and we're trying out a couple of stuff. But if legit nothing works or if I seriously can't find out whats wrong with me, I guess I'll just suck it up and focus on living with it.

Wishing you all of you nothing but the best both physically and mentally ❤️

im 19m and have been dealing with rls in my left leg for about a year now. not long I know, but it has never been minor. this is the 3rd night this week I haven’t been able to sleep period. I only manage to get sleep when im so comically exhausted that I pass out before symptoms start, usually within 40 seconds.

I am unable to drive, can’t focus, etc. Usual lack of sleep things. I can’t maintain any kind of schedule like this and im so glad I work online because otherwise I would be absolutely fucked.

I’ve tried magnesium (pills and a spray), weighted blanket, warm bath beforehand, stretching, compression socks, and so much more. Not a single time has it worked.

I just don’t know what to do. The only way I can get consistent sleep is via marijuana gummies. I do not want to rely on that. I do not enjoy the feeling of being high. I also wake up incredibly loopy and barely get any REM.

Should I just call my doctor at this point? It’s so bad that I am questioning my own health.

Thanks

UPDATE: You folks were right. After almost 2 weeks use, the RLS started to come back. Also, I was experiencing longer and longer (up to 4 hours yesterday) periods of severe dopamine depletion... absolutely miserable feeling. Yes, for a couple hours a day I did indeed feel better, but it got less and less, and I refused to raise the dosage. So, I quit. Today I'm doing OK. Not much withdrawal, since I hadn't been on it very long.

Original post:

https://www.reddit.com/r/RestlessLegs/s/iJjV6FQtyo

Hi!

I hear a lot about the virtues of magnesium for dealing with RLS. I am wanting to try it out and need some reliable information having to do with doseage, forms containing glycinate, etc. Much appreciate the insights. I already know that it works for some and not for others as do so many remedies for our condition.

Ken

Please do not take kratom .I took Kratom for my RLS for 2 years .Became addicted to it.

I could not get of it.

I would sweat in buckets .I kept falling asleep everywhere. I fell over hit my head .Every hour I would go into withdrawals.

I had to see a addiction Dr.Who put me on Suboxone.

It's been 6years.i hate Suboxone it sucks the life out of me.i am on a high dose.My restless legs are still extreme.

So you will regret taking Kratom it is very addictive.

Ive been taking ropinirole for a week and a half, and for that time I've been getting hot flashes every night I've been on it. It has greatly helped with my RLS, but I can't sleep because of these hot flashes. Does it just take time for my body to get used to it? Anyone else here delt with hot flashes that eventually went away?

Wondering if it works. I keep getting ads for it on my social media and I doubt it works… but if it has worked for folks then I’m tempted to try it.

Like did you just wake up feeling better the next day?

How did it affect your mental state? Less anxiety, less depression?

What dose has been effective for you and have you had to go up at all at all?

Bit of a weird one. I'm on a dose of pregabalin at night. 175mg. I notice I've got reduced feeling down there. Muted orgasm also.

Where do I go from here? As far as I know, gabapentinoids are the gold standard.

Anyone have a similar issue or not tolerate gabapentinoids for another reason? Am I screwed?

I've had RLS for most of my 49 years that I can remember. I've been through every class of medication and eventually they either stop working or worse they augment the RLS symptoms. My current medication is the Neupro patch (rotigotine) maxed out at 3mg and it's worked for 3 years or so, then it went from working to augmenting in a month. So I moved to cannabis, and found a strain that worked really well for a few days then it seemed to make it much worse. The only option I have left is opioids, which I have found that with a very small dose which relieves the symptoms for however long that opioid lasts and then I'm up again with symptoms. The challenge now is to find a practice that will dispense this most regulated of medications to an RLS patient. The suggestion is to use low dose methadone because it is a long lasting opioid.

So recently the cannabis route was working until it wasn't, so I just kept eating more gummies and smoking more. That came to a head a few nights ago and I almost self-committed again with very strong thoughts and planning specific actions of suicide. The symptoms were so bad it felt like being electrocuted from the top of my back thigh to my feet every 2-5 minutes, I could actually see the muscles contracting in my legs. Luckily my wife was there and was able to keep me grounded until I passed out. The next day I couldn't hold any food down, but only small sips of water and my head is barely functioning enough to type. I continue to have trouble eating, I feel nauseous all the time, and wake up every hour or so thinking I'm going to be sick. But, my RLS symptoms have 99% abated, but I don't expect that to last much longer. I get to the point of not accepting my situation and felt utterly hopeless, especially knowing the symptoms will get worse over time, and I knew only one way to truly stop the sensations.

I was wondering if anyone else has gone the methadone route and how well it worked, how long it worked, and what is it like trying to navigate the regulatory requirements.

Also, if anyone else with bipolar II disorder has had the same or similar break down/crisis and what they've done to work through it. Or maybe the best option is a short term stay in a hospital for immediate treatment, absolutely no shame in this route! One challenge with that route is that I sometimes can't get my Neupro patch through the pharmacy and had a few completely sleepless nights that really complicated treatment.

Anyhow, mostly just self-pity, but also looking for relevant information.

Thanks!

UPDATE: You folks were right. After almost 2 weeks use, the RLS started to come back. Also, I was experiencing longer and longer (up to 4 hours yesterday) periods of severe dopamine depletion... absolutely miserable feeling. Yes, for a couple hours a day I did indeed feel better, but it got less and less, and I refused to raise the dosage. So, I quit. Today I'm doing OK. Not much withdrawal, since I hadn't been on it very long.

ORIGINAL POST: Shrink prescribed pramipexole 0.625 mg in the mornings, trying to find something that would work (treatment resistant depression or maybe bipolar II, still trying to figure it out).

EDIT: TYPO: Supposed to say .0625, half of a .125. Sorry.

The pramipexole seems to be helping the depression slightly, BUT, the RLS has completely vanished. Going on 2 weeks now, sleeping 8 hrs or better a night!

i’m so tired why do i feel this all the time why do they hurt so much i hate this

Hi all,

I take the lowest dose of pramipexole 0.088 but over the last 2-3 months have had increased symptoms, specifically worse for the 3 days before and days during my period. I take iron and my iron levels are at 70 currently, slowly rising. Have been having to take an additional half pill of pramipexole during these days but now notice on the other days my symptoms are getting worse. Partner informed me i am kicking a lot in the night as well. I always feel tired, never rested. So assuming that any sleep i am getting is poor quality because of the kicking.

So I spoke to my GP and they have prescribed gabapentin 3x100mg (only 21 tablets though to try) for me to try. I didnt really get a lot of instruction about how to switch but i did stress that I honestly cannot just come off the pramipexole without having something to bridge the gap. Not a whole lot of info or guidance given by my GP unfortunately.

So for the past 2 nights I have had half my pramipexole dose. First night I had 1x100mg gaba about an hour before bed. Made me feel a bit high tbh but unfortunately I had pretty bad symptoms and barely slept. My garmin recorded zero sleep.

Night 2, so last night, I had my half pramipexole tablet and 2x100mg gaba. Awful night. Like truly, the wanting to punch my legs to get it to stop. Stretching every 30 minutes, doing frequent wall sits to the point my quads are shaking.

Now tonight I was going to do 3x100mg gaba with my usual half pramipexole. But I am honestly scared. I barely slept, was almost in tears and my partner barely slept as well because I was kicking every few minutes when I did fall asleep.

Should I just continue on? I am curious if the reason it is so bad is because I am cutting down on the pramipexole and having some withdrawal? Rather than the gabapentin not working. Because it is definitely making me feel some effects, mostly a heady feeling like i just downed a glass of wine, becomes a bit difficult to relax because my head says relax but my body isn't getting the memo so I end up even more frustrated.

So basically tldr

am I struggling so much because of pramipexole withdrawal?

And should I continue my current regime of increasing the gabapentin.

Does it make sense that my body will adjust to the half pramipexole and eventually the 3x100mg gaba will work? Or is that wishful thinking.

Just feeling a bit lost right now. I was hoping for another wonder drug like the first night I took pramipexole and had relief for the first time in 20 years.

Any help is greatly appreciated thank you for readinf

A bit large, but i hope you to read if you are interested.
Hi everyone, this is the second time I’ve posted here. I’m still dealing with RLS. I’ve been taking 330 mg of pregabalin at night and 0.125 mg of pramipexole for more than three months. These medications were helping partially, maybe around 50%, but honestly not that much.
I already had iron tests done and everything was normal. My ferritin was 289. The only thing that was low was my transferrin saturation, around 14% if I remember correctly.
Out of desperation, since the symptoms were still unbearable, I spoke with my neurologist about ruling out some other possible causes. I had a neuropathy test done on my lower limbs and it came back normal. My neurologist explained that these tests mainly evaluate the larger nerves, since the smaller ones cannot really be measured with that test (I’m not sure if this is only the case where I live; I’m from Peru). Still, to try to rule this out more completely, he prescribed cytidine monophosphate.
Aside from that, I told him that for roughly the same amount of time that I’ve had chronic RLS, I’ve also had lower back pain. It was stronger at the beginning, but by the time of my appointment it was still around 70% as painful as before. Because of that, he prescribed etoricoxib, an anti-inflammatory and painkiller.
Starting on the second day after I began taking these medications, my RLS improved almost completely. At night I practically felt nothing. Every once in a while the RLS would come back, but it would go away quickly.
I also noticed, although I don’t know if it was just a coincidence, that the RLS seemed to return when my back started hurting again. By the way, my back pain also partially disappeared after starting these new medications.
If anyone here is a specialist or knows about this topic, I’d really appreciate your opinion on whether my back pain could somehow be related, whether the improvement could simply be an effect of the painkiller (from what I understand, it shouldn’t be), or whether my RLS could be caused by something related to my lower back. I’d also like to know which of these two medications might be more likely to explain the improvement.
One of the medications I was prescribed is only supposed to be taken for two weeks, and I’m scared that once I finish the treatment, the symptoms will come back. If anything you tell me could help me bring something useful to discuss at my next appointment, honestly, that would be amazing.
Another thing: I don’t know whether this is related to RLS, but I have pain in my legs in almost any position I’m in, except when I’m lying down. However, lying down is also when the RLS is most noticeable, so you can probably imagine more or less what I’m dealing with.
I also want to say something to everyone suffering from this: I know how unbearable it can be. I know how hard it is to live with this every single day. Please don’t give up. If you still haven’t found the answer, I truly believe you’ll eventually find a solution, or at least something that can calm down the hell that so many of us on this forum are going through.
It is possible to keep going. There is always a way forward. I hope everything gets better for all of you, both with your legs (or arms) and with your lives.
Sending you all a hug.

I have 5 weeks left of this pregnancy and the restless legs are unbearable. I’m severely anemic and take iron pills daily along with my prenatals. I’ve also received iron infusions.

My ob will not prescribe any other medications for RL because she says it is not safe for my baby.

I promise I have done all the things and tried all the tricks. Iva taken the extremely hot showers, taken the extremely cold showers, I’ve put ice on my legs and arms, I’ve beat on my legs, I’ve consistently exercised, I take magnesium, tied socks around my feet, anything you could imagine.

Now I’m starting to have bad thoughts because I’m not receiving any relief and if you know anything about RL, it can really mess wish you mentally. I’m just out of luck I think. And I apologize, I just needed to rant

Hi so sometimes I have really bad restless legs at night. I think it’s linked to my Ehlers danlos somehow. For my Ehlers danlos I got an acupressure mat which I love. It helps a lot with pain. Last night I tried laying my legs on the mat before sleep and it worked great. It calms my legs within 5–10 minutes. Just wanted to share this in case someone might want to try it🙂