Help! Restless legs!

[EddieB]

Anything I could use instead? Tried all the natural methods.

I was on mirtazapine, weened down to just a crumb (1/4 of a 7.5 mg). Sleep good with it, can’t sleep without it. So I’m continuing with it for now. I still have some RL, it may or may not be contributing at this dose.
It’s a pretty unpredictable drug, so I would consider it a last resort. But it definitely makes you sleep.

 

[Frunobulax]

I have been using nytol for sleep. I noe have severe leg aches at night. Anything I could use instead? Tried all the natural methods.

Melatonin, 5-HTP and Gaba work for me.
I will use Diphenhydramin hydrochlorid for a night or two, and didn't observe increased RLS.

I was on mirtazapine, weened down to just a crumb (1/4 of a 7.5 mg). Sleep good with it, can’t sleep without it. So I’m continuing with it for now. I still have some RL, it may or may not be contributing at this dose.

Mirtazapine is also known to cause RLS.
As for sleep inducing antidepressants, Trazodone may be the best as it seems neutral to RLS. Dr. Buchfuhrer remarks Bupropione may be best for RLS patients, but he also says there's a lot of contradicting evidence so we don't really know.

 

[EddieB]

Mirtazapine is also known to cause RLS.

Yes, it is. But strangely enough, my RL became better after being on it for while, then got a lot more severe tapering off. Overall, it’s a strange drug, I wouldn’t recommend it.

 

[DoubleBubble]

I only read some of this thread so I may repeat something that’s been said already. Have you seen a neurologist? RLS should be assessed by one who focuses on movement disorders. If the OTC methods don’t address it, your doctor might prescribe a med such as Horizant or Neupro. I tried both after I was diagnosed—I brought a self-diagnosis to my neurologist who confirmed it—and I had success with Neupro. I will likely take it for the rest of my life, assuming it still helps. It comes in the form of a 24hr patch. This med is also used at higher dosages to treat Parkinson’s. Horizont comes in pill form. It didn’t mitigate my symptoms at all.

To anyone taking a benzo like Clonazapem for RLS, tread lightly. It’s addictive and comes with many side effects. If you have an anxiety disorder, even then I would recommend trying to keep use of benzos to a minimum—for extreme moments only—and instead consider something safer like a beta blocker to manage social anxiety, for public speaking, etc.

I have Generalized Anxiety Disorder and RLS, and I never touch benzos. When I have trouble sleeping or my anxiety levels climb, I vape small amounts of cannabis (flower). Not saying this is a prescription for others but it helps me. The only issue is, cannabis makes me more tired.

But my sleep hasn’t been restorative in eight months, and I’m always tired whether or not I vape. My fatigue specialist told me the cannabis is fine and clearly isn’t a driver for my fatigue. This was obvious since I’ve consumed cannabis for anxiety for years and years.

 

[Frunobulax]

I only read some of this thread so I may repeat something that’s been said already. Have you seen a neurologist? RLS should be assessed by one who focuses on movement disorders. If the OTC methods don’t address it, your doctor might prescribe a med such as Horizant or Neupro. I tried both after I was diagnosed—I brought a self-diagnosis to my neurologist who confirmed it—and I had success with Neupro. I will likely take it for the rest of my life, assuming it still helps. It comes in the form of a 24hr patch. This med is also used at higher dosages to treat Parkinson’s.

To anyone taking a benzo like Clonazapem for RLS, tread lightly. It’s addictive and comes with many side effects..

The side effects of dopamine agonists (like Neupro) can be even worse than benzos. Addictive, leading to serious psychological disorders. Unfortunately, being a Parkinson drug, these side effects were at first attributed to the PD. But since we treat RLS with that too, we observe that they show the same side effects.

Also, it leads to augmentation fairly reliable, that is, the disease gets worse and you'll need larger and larger doses. Usually only part of the augmentation disappears after switching to a different drug.

I'd strongly suggest to stay away from dopamine agonists. Trust me, I've been through hell because of the wretched things.

 

[lenora]

The side effects of dopamine agonists (like Neupro) can be even worse than benzos. Addictive, leading to serious psychological disorders. Unfortunately, being a Parkinson drug, these side effects were at first attributed to the PD. But since we treat RLS with that too, we observe that they show the same side effects.

Also, it leads to augmentation fairly reliable, that is, the disease gets worse and you'll need larger and larger doses. Usually only part of the augmentation disappears after switching to a different drug.

I'd strongly suggest to stay away from dopamine agonists. Trust me, I've been through hell because of the wretched things.

I also have RLS Syndrome, along with a host of other problems, and my sleep is almost non-existent. RLS only adds to an existing array of problems, all of which have been proven to being attributable to illnesses of one sort or another.

My neurologist who has traveled with me through some horrendous illnesses and surgeries, finally put me on a strong drug for Parkinson's that he himself takes. It works like a charm and not only have I finally been able to break the cycle, but I actually have to take fewer and fewer with each passing week. I'm down to 1/day and I take it before I get into bed. Sometimes I'll even forget that amount.

I find that sitting in bed first aggravates the situation, but what do you do when you've been up for hours and hours and your body can't take it any longer? No, I don't like going on meds., I have enough, thanks, but sometimes it's necessary. Yes, I tried all of the natural methods first and it's almost impossible to describe the feeling of RLS. Only another sufferer can understand. I believe the name of the drug is pramiprezole, but I may be mistaken....I don't have the bottle here and my husband is sleeping, so I don't want to disturb him.
RLS is thought to be a pain response, but hasn't been proven as such.

I agree, you do have to be careful with meds, but in the end I think many are addictive - psychologically if not physically. Be a watchful patient. We're all different and reactions vary considerably. Yours, Lenora

 

[Frunobulax]

I believe the name of the drug is pramiprezole, but I may be mistaken....I don't have the bottle here and my husband is sleeping, so I don't want to disturb him.
RLS is thought to be a pain response, but hasn't been proven as such.

I agree, you do have to be careful with meds, but in the end I think many are addictive - psychologically if not physically. Be a watchful patient. We're all different and reactions vary considerably. Yours, Lenora

These drugs alter your brain chemistry, and with time you may start to behave weird, get impulse control issues. You yourself won't notice, until you're a full blown maniac. Happens to about 15% of the patients taking Pramipexole. Wanna play russian roulette? Google it, "pramipexole" and "impulse control". And if your neurologist hasn't warned you about it, frankly, I'd look for a new one. Because this has been all over the medical literature in the last 10-15 years. He should know, and alert patients.

Also, be VERY careful if a dose increase is required. You may go years with a constant dose, then you're lucky. But you may require more and more after just a few months. Then you're in a vicious cycle of augmentation.

Just want to save you from what I've been going through. And yes, it was pramipexole too.

 

[DoubleBubble]

The side effects of dopamine agonists (like Neupro) can be even worse than benzos. Addictive, leading to serious psychological disorders. Unfortunately, being a Parkinson drug, these side effects were at first attributed to the PD. But since we treat RLS with that too, we observe that they show the same side effects.

Also, it leads to augmentation fairly reliable, that is, the disease gets worse and you'll need larger and larger doses. Usually only part of the augmentation disappears after switching to a different drug.

I'd strongly suggest to stay away from dopamine agonists. Trust me, I've been through hell because of the wretched things.

I'm not aware of a linkage between Neupro and psychological disorders. Can you share some links to material on this? It's alarming. Did you take Neupro? For how long and what dosage? What sort of symptoms/side effects did you have as a result? My neurologist and the second opinion I got both advocated for Neupro since Horizant didn't work. They were both aware of my mental health issues. I wasn't sleeping at all and I was losing it within just a few days of insomnia.

 

[lenora]

These drugs alter your brain chemistry, and with time you may start to behave weird, get impulse control issues. You yourself won't notice, until you're a full blown maniac. Happens to about 15% of the patients taking Pramipexole. Wanna play russian roulette? Google it, "pramipexole" and "impulse control". And if your neurologist hasn't warned you about it, frankly, I'd look for a new one. Because this has been all over the medical literature in the last 10-15 years. He should know, and alert patients.

Also, be VERY careful if a dose increase is required. You may go years with a constant dose, then you're lucky. But you may require more and more after just a few months. Then you're in a vicious cycle of augmentation.

Just want to save you from what I've been going through. And yes, it was pramipexole too.

Hi....No, I don't want to be addicted to anything, including coffee in the a.m. To be honest though, I firmly believe that we're addicted to drugs if not physically, then psychologically. Not all, of course, but some.

Yes, they change the brain chemicals, but that's how they work. Gabapentin, the first anti-seizure drug we used was the exact same way & it did work. It stopped the seizures that sent pain signals down the spinal cord to the nerves and then muscles. It had been used for epilepsy for years. I'm against drug use because they caused the very early deaths of people I loved. And now b/c of one condition after the other, I take meds that I never wanted to, but b/c of what may happen (and has in my case), I suppose I should be grateful they're available. Some of us suffer severe pain as a result of damage, and as opposed to spending a life in bed, still in pain, or taking the drug, I'll do that any day. I do give myself vacations, just like I do vitamins, but drugs cross a line when they're illegally used by companies who knowingly know of a certain bad side-effect, and don't notify doctors or the public. That's outrageously wrong, as we all all know.

Any substance has side effects the positive on one side and negative on the other. Again, I so wish I wasn't caught up in this, but I am. Some of the cholesterol lowering drugs have horrible side-effects in some, but not all people. We each have to weigh our risks.

So, yes, I'll take my chances with the Parkinson's drug b/c nothing else has ever worked. I'm going in the opposite direction...I'm going down in my use of it and there are days when that doesn't occur at all. I average no-2 or 3 hrs. sleep per night. Very little, and if I had RLS I'd be totally awake all night long. I was a nurse for 8 yrs. many years ago, I'm up to date on medical matters and I, like you probably do, dislike the ads on TV. Oh, by the way, I was reading recently where Pamiprexole has worked on people with CFS/ME....etc. The doses are high, but for those willing, it's an interesting study to follow. Yes, I'd have problems with many of my drugs (being without them), but there are no choices. Just like I didn't choose to have the surgeries I did (one of them being brain surgery), I wouldn't have it today, but I was very young and strong at the time. Far worse was the spinal cord surgery I had...I still have the additional pain it left me in, along with a healed fractured rib that gives me no end of trouble.

I'm sorry, I don't mean to make this a lecture. You're wise to go into things knowingly, don't ever stop that. But, also, don't let it hold you back from something that may change your life. One of the bad things the Internet has done is giving us too much information. Sometimes it's almost impossible to make a choice. I hope you aren't too horribly afflicted and that your maintaining your own. Yours, Lenora.

 

[Frunobulax]

I'm not aware of a linkage between Neupro and psychological disorders. Can you share some links to material on this? It's alarming. Did you take Neupro? For how long and what dosage? What sort of symptoms/side effects did you have as a result? My neurologist and the second opinion I got both advocated for Neupro since Horizant didn't work. They were both aware of my mental health issues. I wasn't sleeping at all and I was losing it within just a few days of insomnia.

All dopamine agonists. Some more than others, Pramipexole is especially implicated.
https://www.google.com/search?q=dopamine+agonist+impulse+control+disorder

 

[Frunobulax]

Hi....No, I don't want to be addicted to anything, including coffee in the a.m. To be honest though, I firmly believe that we're addicted to drugs if not physically, then psychologically. Not all, of course, but some.

You don't understand. It's not about addiction, addictions can be broken. And you'll notice them.
The change with dopamine agonists is such that you will go crazy, but you won't notice until you're in deep shit. Many people have ruined their lives, gone into bancruptcy, ruined their marriages.

And that's the issue. "Normal" side effects can be linked to the drugs, you'll notice them. But dopamine agonists change you months or years after you started taking them. Way too late to draw any connection to these drugs, that apparently worked miracles and without issues for years. There are much better drugs to deal with Restless Legs. Iron infusions first, then opioids. Yes, opioids are much safer than dopamine agonists, as far as I'm concerned. (At least in the low dosages required to treat RLS.) Gabapentin/Lyrica if they work for you, too.

Yes, there are always side effects to drugs. But we're not talking about headaches or something that just stops after you quit the drug.

 

[DoubleBubble]

All dopamine agonists. Some more than others, Pramipexole is especially implicated.
https://www.google.com/search?q=dopamine+agonist+impulse+control+disorder

Have you come upon studies or papers that show a link between these meds and other dangerous side effects? I don’t have an impulse control problem—quite the opposite, actually—and I’ve taking Neupro for a year, though only 1mg. I’ve taken other meds that can cause similar impulse issues but never had this experience. That said, it’s something to monitor especially at higher dosages.

You wrote initially with a strong message opposing these drugs. So I’m curious what’s behind your conviction besides the impulse issue risk. I find people often take an extreme stance on drugs based on personal experience. This isn’t without merit but it’s also important to note that each individual experiences side effects in a unique way.

EDIT: just saw the other post. Wanted to mention my iron levels are good and were fine when my RLS started so I don’t have a need for iron supplements. I disagree with any blanket statement that opioids are better than drugs like Neupro. Do you have more literature to explain your position? I’m genuinely interested.

 

[lenora]

mm
mmmmmmmmmm


Frunobulax.....Hello again. First off, I was on fentanyl for years until the govt. in TX very quickly stopped the use of it. I've been from the highest (post surgery....years ago) to the lowest. It did nothing for my RLS, in some of us they're almost impossible to control.

I'm on lyrica and was on gabapentin from the beginning of its use in CFS. Both have been very helpful, although gaba was started at 600 mg., too high for most of us. As you know, it was first used in epileptics and is an old drug with new uses. I was in a mental fog for 3 mos., couldn't remember anything and had post-its all over the house. As soon as they were written, I stuck them up and had no idea of what they said....my mind had gone.

I saw my neurologist and my dose was lowered to 300 mg. I came out of the fog of 3 mos., and indeed, the pain was less, although I was still suffering from it...just at a lower level. When lyrica arrived, I went on it. I'm not encouraging people to automatically go on pramiprexole but I'm 73 and you have no idea of the suffering I've been through. Torn nerves, pain that never ends, spinal cord being cut into in the brutal early surgeries for one of my illnesses, brain surgery and GI surgery. Nerve pain is the worst kind to have....it's constant burning and I find that ice is a good way of lowering the decibel of it. I also suffer from severe seizures due to a new illness Autoimmune Encephalitis...again nothing to do with ME/CFS and congestive heart failure. I now have a total of 5 stents. I'm a very petite person, not fat and we've always had an extremely healthy diet. I'm also happy and put all the illnesses in a special place so they don't interfere with my life more than necessary. I'm not alone, so please bear that in mind. Other patients suffer just as much if not more.

I do know what your referring to b/c a lot of anti-depressants have this effect and yet what do we do if natural treatments don't work? Please tell me. Last night I may have slept for an hr., sitting upright over my computer. I didn't have RLS and don't take even the lowest dose of the medication unless I can feel it coming on. It's an advanced case....and in my case has been getting much worse over time. I can't afford to lose what little I manage to get to RLS.

I'm a firm believer in natural methods, vitamins/supplements and other things first. I use them when possible. I'm the oldest living person who actually comes out and talks about the other (what were unknown at the time illnesses I was diagnosed with...you become a quadraplegic, then die b/c of damage to the brainstem). Many people on here are far more ill than you may ever think. So it's not a decision that I made without thinking over seriously.

I go for periods of time when I'm not using it at all....but there are periods when it could drive anyone insane. We're all guinea pigs for every new thing that comes along, it's the truth. Most doctors and their patients....even the drug companies (and no, I'm no spokeperson for them). My husband's involved with a think tank that is doing groundbreaking brain research. It's moving along so fast that it has two buildings in Dallas and is run by a woman we met years ago, Dr. Sandra Bond Chapman. Look her up and see the work that's being done. The brain is a new frontier as far as research goes. We're only just beginning to find out the positive and negatives of certain things. But, like I said, I'm 73 yrs. old. Did you also know that the same drug is being used in higher amounts for the treatment of ME/CFS?....as far as I know these are still in trials, but of course real life subjects are used. It is already being used in some countries. There is way too much information available for us today. Again, let me stress, people should educate themselves not just with the Internet but with books, also.

I'm not arguing with you, but as in so many other things in life, there are other sides to every story. Until we know the total personal histories of each other, we can't understand a problem or the best way to go about handling it. I do think people should be informed about what you're saying, and the decision is theirs. Lenora.

 

[junkcrap50]

The change with dopamine agonists is such that you will go crazy, but you won't notice until you're in deep shit. Many people have ruined their lives, gone into bancruptcy, ruined their marriages.

And that's the issue. "Normal" side effects can be linked to the drugs, you'll notice them. But dopamine agonists change you months or years after you started taking them. Way too late to draw any connection to these drugs, that apparently worked miracles and without issues for years. There are much better drugs to deal with Restless Legs. Iron infusions first, then opioids. Yes, opioids are much safer than dopamine agonists, as far as I'm concerned. (At least in the low dosages required to treat RLS.) Gabapentin/Lyrica if they work for you, too.

Yes. This is very try. There are TONS of stories in the literature, blogs, sleep & RLS forums of patient's reactions to dopamine agonist - total personality changes. I know of a family friend who bankrupted his/her whole family due to a gambling addiction induced by Mirapex. It was totally abnormal behavior for him/her. There is also a REMARKABLE published case study of a Mirapex or another dopamine agonist turning a normal, monogamous, loving heterosexual family man into a homosexual, sex addict with very risky behavior. Nearly ruined his marriage and family. And when he stopped the dopamine agonist, he reverted to previous heterosexual and monogamous self. So these drugs can REALLY screw up your brain and dopamine systems.

Also, many of the dopamine agonists eventually stop working. And I believe, worsen or damage the dopamine receptors, worsening RLS permenantly.

 

[DoubleBubble]

Yes. This is very try. There are TONS of stories in the literature, blogs, sleep & RLS forums of patient's reactions to dopamine agonist - total personality changes. I know of a family friend who bankrupted his/her whole family due to a gambling addiction induced by Mirapex. It was totally abnormal behavior for him/her. There is also a REMARKABLE published case study of a Mirapex or another dopamine agonist turning a normal, monogamous, loving heterosexual family man into a homosexual, sex addict with very risky behavior. Nearly ruined his marriage and family. And when he stopped the dopamine agonist, he reverted to previous heterosexual and monogamous self. So these drugs can REALLY screw up your brain and dopamine systems.

Also, many of the dopamine agonists eventually stop working. And I believe, worsen or damage the dopamine receptors, worsening RLS permenantly.

if you have links, can you share?
Im looking for data across larger samples. Studies of a single person who responded this way aren’t too relevant to me. We also run into major trouble mapping side effects to a single drug when we’re on multiple drugs and many supplements for different conditions.

there’s some heavily affirmative discussion here about these drugs and it’s surprising to me, being this is an ME/CFS forum. Don’t we recognize the nuance here?

 

[Frunobulax]

Have you come upon studies or papers that show a link between these meds and other dangerous side effects?
[...]

You wrote initially with a strong message opposing these drugs. So I’m curious what’s behind your conviction besides the impulse issue risk.

Oh yes. This is well known in the medical community. Here in Germany, the "german FDA" issued an official warning about impulse control disorders and forced them to put a strong warning on the package inserts. The guidelines for neurologists include that they should warn patients, and check for these side effects whenever they prescribe dopamine agonists.

The english version vrom the European Medicines Agency HMA can be found here: https://www.ema.europa.eu/en/docume...ncerns-guidelines-general-matters-july_en.pdf (scroll to Annex 6 on page 26).

There are theories that this happens because the drugs have a strong affinity to the D3 dopamine receptor https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328150/, https://onlinelibrary.wiley.com/doi/abs/10.1002/syn.21805.

Unfortunately, it mostly shows up in the context of Parkinsons, not Restless Legs. Separate studies show that the prevalence of impulse control disorders is just as high in RLS patients. The prevalence of ICD in studies ranges from 17% https://pubmed.ncbi.nlm.nih.gov/20120624/ to 39% https://jnnp.bmj.com/content/85/8/840.short. Seems that one risk factor is augmentation, that is, patients augmenting are much more likely to get ICD. The incidence seems to be even higher than in the PD studies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154756/.

Here is a literature list (click to have a readable image):

 

[Frunobulax]

if you have links, can you share?
Im looking for data across larger samples. Studies of a single person who responded this way aren’t too relevant to me. We also run into major trouble mapping side effects to a single drug when we’re on multiple drugs and many supplements for different conditions.

I gave you a few links to studies, and there are tons of other studies if you go to google scholar.

However, it is worth reading the case reports, because they all agree in one thing: Total personality changes, and patients usually manage to completely wreck their lives within months or 1-2 years. And I know from personal experience that 99% of all doctors have no idea how dramatic this is. The 1% (specialized neurologists) will tell you that these patients behave as if they were taking heroine or other drugs, in significant doses.

The changes can be reversed, but at the earlierst a few days after stopping the drug. Now, if you augment, you won't get a minute of sleep if you forget to take them, so this never happens unless the drugs are stopped by a doctor...

There can't be any doubt about the cause, because if the dopamine agonists are stopped, the pathological behaviour stops too. And patients will usually re-develop impulse control disorders very quickly if they are put on different dopamine agonists.

there’s some heavily affirmative discussion here about these drugs and it’s surprising to me, being this is an ME/CFS forum. Don’t we recognize the nuance here?

There was a strong recommendation for these drugs here. As RLS is common in ME/CFS, people should at least know the risks. Again, some studies had the incidence of impulse control disorders as high as 39%.

 

[DoubleBubble]

Oh yes. This is well known in the medical community. Here in Germany, the "german FDA" issued an official warning about impulse control disorders and forced them to put a strong warning on the drug information. The guidelines for neurologists include that they should warn patients, and check for these side effects whenever they prescribe dopamine agonists. There is speculation that this happens because the drugs have a strong affinity to the D3 dopamine receptor https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328150/.

Unfortunately, it mostly shows up in the context of Parkinsons, not Restless Legs. Separate studies show that the prevalence of impulse control disorders is just as high in RLS patients. The prevalence of ICD in studies ranges from 17% https://pubmed.ncbi.nlm.nih.gov/20120624/ to 39% https://jnnp.bmj.com/content/85/8/840.short. Seems that one risk factor is augmentation, that is, patients augmenting are much more likely to get ICD. The incidence seems to be even higher than in the PD studies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154756/.

Here is a literature list.

You mean dosage increase when you say augmentation?

my iron levels are fine so I really don’t know what else to consider. spraying my legs with magnesium?

I just know when I forget to change my neupro patch on time I sometimes have restless legs. Wondered about those ankle weights they sell for RLS. Like this https://www.restiffic.com/products/restless-leg-foot-wrap

i take a small dosage of Lexapro for depression—have since long before I got CFS—and the SSRI can cause or worsen RLS. Now on 50mg of Seroquel (a low dosage) for mood (condition also predates CFS) and that drug can cause or worsen RLS and Parkinson’s so I’m at a very low amount to avoid this.

 

[junkcrap50]

if you have links, can you share?

No not off hand.

there’s some heavily affirmative discussion here about these drugs and it’s surprising to me, being this is an ME/CFS forum. Don’t we recognize the nuance here?

Yeah that's been curious to me too. Helps CFS patients. But I'd stay away from it. If you're desperate enough, probably worth trying.

 

[Frunobulax]

You mean dosage increase when you say augmentation?

No. Augmentation is a term specifically used for RLS when treated with dopamine agonists and L-Dopa, and the definition is (from memory) that the symptoms become both stronger and extend to different body parts. It also often includes earlier onset, so symptoms will show up during daytime instead of evening only.

So we're *not* talking about tolerance, which is normal for many drugs (with time, you need a higher dosage to achieve the same effect). Physicians usually react with an increase in dosage, which in turn leads to further augmentation. (Instead, they should switch to a different drug.) There have even been case reports of severe RLS symptoms that completely went away a few weeks after quitting the dopamine agonists. Somehow the dopamine agonists kept the disease going.

Part of the augmentation appears to be irreversible for many patients, that is, if patients are switched to other drugs they improve, but usually do not get back to baseline (before they started dopamine agonists). That's a big issue, and many neurologists are not well schooled about this. Tolerance never leads to a permanent worsening of the underlying disease, but augmentation probably does. (And this has been widely neglected in the literature, too - studies and textbooks focus mostly on the fact that the symptoms get better a few weeks after coming off the dropamine agonsits, but neglect to mention that many patients never return to baseline.)

Other RLS drugs (opioids, alpha-2-delta ligands like Gabapentin/Lyrica) will not cause augmentation. And that's another reason why I strongly suggest to stay away from dopamine agonists.

my iron levels are fine so I really don’t know what else to consider. spraying my legs with magnesium?

RLS is most likely caused by iron deficiency in the brain (at least pretty much all RLS researchers work under this assumption). You can have good iron levels in the blood, yet a deficiency in the brain. The reason for this is unknown. Possibly this is the reason why only half of the RLS patients respond to iron IVs.

Ferritin is useless as iron marker btw (you can have high ferritin while being deficient), you also need to consider transferrin sat% and possibly more iron values. So while low Ferritin indicates a deficiency, high Ferritin does not indicate that you're fine.

There are many remedies to help RLS. Vitamin B12, Magnesium, some amino acids like Taurine, cold baths... There are lists around if you google for them. But it's very similar to CFS: There are lengthy lists, but many patients try everything and nothing works. Still, it makes sense to try these things.