Much like everyone I read about on this site, I have “been there and done that” with RLS treatments. Most recently iron infusions have not improved my symptoms and even opioids are not working any longer. I am finally at the end of the road as far as treatments go. Now it’s up to me to try and get some control over this demon on my own through diet. I am not the healthiest of eaters. I love good food but I have a demanding job and very little time to prepare meals.
2023 is going to be a big life change for me but if I have the results like the woman in that blog did, it will be life changing. Can you even imagine no RLS? No meds? Nothing?? Sleeping through the night?! Watching a matinee in a movie theater?! If anyone else out there wants to take this journey with me, message me! We can share gluten free, dairy free, red meat free, processed food free, fried food free, organic recipes! Good bye pastries and candy and hopefully good-bye RLS too. I plan to journal everything. I am tired of writing 3am posts as I pace.
Happy New Year to all my fellow RLS sufferers. Here’s to hoping for a better year to come for all! Cheers!
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Mary Christmas, DataRN. Thanks for sharing the link; I just read the article.
In my case, however, a material change to my diet is an option that I cannot pursue. Unlike the author of the linked article, my mother was not baking cookies for me in 1958; instead, she was beating me (literally) for not eating fruits and vegetables. Only years later did I assign the term "food allergy" to my reactions.
Some of us (myself included) have allergies to some (many) nuts, fruits, vegetables, dairy products, etc.. Others (myself again included) have "high" cholesterol that may limit our ability to eat certain foods. Efforts to modify a diet may not work for all. Minor adjustments aside (e..g, drinking "lactose-free milk; eating only fully ripe bananas; excluding red meat in favor of chicken and poultry), some of us may have little choice. And, as my User Name suggests, I am not wholly convinced that diet bears all that much on RLS discomfort.
My father suffered nightly with (primary) RLS. Though he worked steady his entire life and was good at what he did, he drank heavily and daily to the point of alcoholism (though we didn't call it that in those days). Truthfully, I don't think his drinking affected his RLS one whit--in fact, as likely as not--he drank to relieve his nightly discomfort.
Though I now seldom drink, in my youth I favored Bourbon (Wild Turkey if not Old Grand Dad) and drank regularly, perhaps one or two drinks each day. Not one whit of difference on my RLS. Ditto for coffee. Same RLS whether I drink alcohol or coffee. And ditto for many sugar-rich chocolates. Counter to what one now former "sleep expert" neurologist told me, I find that dark chocolate (70% cocoa) relieves rather than exacerbates my RLS. To be sure, there clearly are some foods that do affect my RLS adversely (salt appears to be a culpret).
The ironic twist of my diet is that not only does it appear not to have improved my RLS, but it may be indicated in certain abnormal concentrations found in my blood. For example: A blood test performed within this very week showed some elevated components, one of which may be protein related. Whether or not harmful I know not; but to the extent that my current diet is "protein rich," my limited diet may have played a role.
Happy Holidays. Be well, now and in 2023 and beyond.
I have developed some food allergies over the years too. Believe me - drastically limiting my diet is not what I want to do at all. I am at a point where there is nothing else to try.
What I do know is the only way to know if diet can improve my RLS severity and frequency is to try. Have you found something that is working well for you? You can trust if changing my diet doesn’t help, I will add foods back in. Either way, for me, eating a healthier diet is a good thing. Take care!
Good evening, DataRN, and thank you for your considered reply. Have I found a diet that works? Every time I go to the supermarket, I debate whether or not to buy or not to buy some food that may not be good for RLS but which I nonetheless would enjoy. The elapsed time of my debate generally is so short as to be undetectable. In the end, I default to the following: There are so few pleasures in life and so few years remaining, that it would be pointless to deprive me of one of the few items that I enjoy.
So I guess that my answer is "No," I do not have a particular diet that I abide, but do make some compromises (e.g., "vegetarian" bacon and sausage). But even here, if push comes to shove, I won't deny myself the Real McCoy during an occasional outing to a favorite restaurant. Otherwise, what's the point of it all?
But what works for me? I elsewhere posted various approaches that work for me--kind of, sort of--on an irregular and temporary basis. Among these:
1. Getting off as many of the so-called "RLS medicines" that you can. For 20+ years, I was taking a steady dose of pramipexole, tramadol, and hydrocodone [Vicodin]. This past year, I've discontinued pramipexole and hydrocodone [Vicodin], and am soon to be off tramadol. Instead, I am recommencing pregabalin which may as yet not have had time to work. Guess what? RLS discomfort, however severe, is no worse than it was with all the damned medicines!
2. Hot bath: Was in severe RLS discomfort an hour ago (~6, scale 1 - 10, with 10 being worst). Took hot bath just now. RLS discomfort is now minor (~1-2);
3. Stretching one's legs/calves; and
4. Leg elevation ~45 degrees from reclined position.
Thanks for the reply. I should have been more clear. From your last reply I was under the impression that restrictive diets don’t work for you. I was more interested in what does work for you besides diets. So, thanks for taking the time to respond. I am very fortunate that my RLS doctor happens to be a leading specialist. Unfortunately years of DA’s have basically fried the receptors in my brain. Most of the treatments that others seem to have luck with just don’t work for me or don’t work for very long. I’m always open to hear what others have found success with. I have to hold out hope that an effective treatment will be discovered. 😌 Thanks again!
I appreciate the fact that you and others value the treatment of so-called sleep experts (neurologists). I do not. Respectfully, your reply itself is ironic: though your RLS doctor is "a leading specialist," somehow that leading specialist has thus far not provided a satisfactory treatment option.
Over the past decades, I have been examined by, treated by, or consulted with some of "the leading experts" on RLS (some educated in Europe and some in the US). Their collective value to me has been worse than useless, and well beneath that of my current general practice doctor.
As a nurse and a RLS patient, I am beyond grateful to my doctor for his compassion and expertise. His only focus is on RLS. Nearly every RLS study done you can find his name associated with it. I feel very fortunate for the care I receive. I read so many posts on here of patients whose doctors refuse to check their ferritin levels let alone are willing to prescribe opioids. You are lucky. Most GP’s seem to be clueless about RLS. Good for you!
Good evening, DataRN, and thank you for your reply. I didn't know if there was a convention not to post here on Christmas, so please excuse my delay.
I am glad that you are under the care of an able physician. As my introductory post elsewhere on this site said, I was not so fortunate.
In hindsight--and speaking only about my own condition and circumstance--here are some of the major--and in my opinion--wholly inexcusable lapses of the "sleep expert" neurologists by whom I've been treated or examined and with whom I have discussed RLS. For convenience, I've listed only some principal lapses for each:
Mirapex (pramipexole): Failure to warn of potential for augmentation, failure to recognize symptoms of augmentation when reported, and failure to alert of Dopamine Agonist Withdrawal Syndrome or to provide any semblance of a timetable for disontinuance notwithstanding order that I promptly cease intake of pramipexole after 20+ years of daily intake. This lack of awareness persisted for months even after I had described DAWS symptoms to the "sleep expert" neurologist;
Ultram (tramadol): Notwithstanding revised FDA/CDC guidelines, refusal to renew tramadol Rx after 20+ years of daily use unless I "voluntarily: signed a Pain Management Plan which would treat me as a drug addict. When I refused to sign, my Rx was not renewed notwithstanding that it was the most effective RLS medicines that I had tried with the least side effects. Even as I type, I am budgeting ever-decreasing reserve so that I slowly may titrate off this medicine;
Tegretol: Prescribed with no mention of the fact that it was a terratogen. Mindful of the FDA's ban on thalidomide some 30 years earlier, I tossed without taking; and
Pregabalin: Prescribed with no mention of the fact that typical side effects sometimes might include proclivity toward "accidental injury" while engaged in common activities. In my case, the common activity was shaving with a straight razor. I accidentally slashed my throat (3") and bled profusely. Only my general reluctance to seek medical attention prevented me from going to the ER. The bleeding persisted for days; and as I type, the area of injury still is sensitive. When I reported to the prescribing "sleep expert" neurologist for informational purposes only, he was contemptuous of any inference of wrongdoing on his part.
And yes, by habit, I am one of those few who read the literature dispensed contemporaneous with an Rx and also research each Rx online before taking. My own findings are incorporated into my comments.
You have certainly been through a lot too. I’m not sure how long ago you were prescribed Mirapex but I was prescribed Requip. I understand that when I started taking it no one warned me about augmentation because no one knew about augmentation 17 years ago. Thanks to the help of my neurologist, I was able to get off Requip. The majority of GP’s still don’t seem to know about augmentation. Every time I see someone on this site saying they are starting to take a DA, I want to scream “don’t do it” through my phone.
I was prescribed Lyrica after I couldn’t take Gabapentin. But I ended up having side effects from Lyrica too. Methadone has been the most effective treatment but even that doesn’t seem to be working anymore. I finished 3 doses of Venofer in November. But I have had zero benefit thus far. I have learned that IV iron is only effective for 50% of patients.
Good evening, DataRN, and thanks once more for your further reply. Yeah, along the way, I also was prescribed Requip, Neupro, Gabapentin, etc.
Maybe I should enlarge my list to include some additional experiences and some additional medicines? So many that I didn't mention: Pregabalin was prescribed for me even though counter-indicated while I was undergoing DAWS and already had augmented on pramipexole. Re-commencing pregabalin now under current General Practice doctor appears to have produced positive results.
And hears a teaser about Neupro: One "sleep expert" neurologist dispensed to me Neupro patches. When I applied at home, they burned at all areas of application. And no discernible relief. No big deal, right? It happens. But when I examined the patches more closely, I noted that all had expired well before the date of dispensing. Online research found that they also were subject to recall by FDA! I later discussed with dispensing "sleep expert" neurologist who prided himself on all things relating to pharmaceutical. His reply: "I woundn't worry about that."
Of all the drugs that I've taken,the best of the lot was tramadol. Little/no side effects; prompt and consistent relief (obscured by pramipexole over time); doesn't evoke "someone trying to kick heroin habit" in popular mind; readily available; inexpensive; no augmentation; etc. No more w/o Pain Management Plan. Odd that the same "sleep expert" neurologist who refused to renew my tramadol Rx w/o a PMP, insisted on moving me up to methadone that likewise would require a PMP.
It's now 9:15 PM where I live. I'm down to 1/2 of a 50 mg tablet tramadol v. 2 x 50 mg tramadol AM and PM. Have now titrated pregabalin up to 150 mg PM. Know what? Though I continue to suffer horrible RLS during the late evening/early morning hours (esp. ~1:00 AM - ~3:00 AM), my daytime discomfort is now less than it had been in years without all the other needless medicines to which I had been subjected.
the carnivoreish diet did not change my cholesterol i love butter. my bone density went up 14% in my spine and 2% in my hip. my limp hair will actually stand up on its own. my IBS is cured proved by lab tests. I hope you continue to have faith in yo0our own ability to seek out YOUR way of eating. good luck with the hard work ahead.
Thanks, jiik, and Happy Holidays, etc. My diet is not by choice. I am allergic to many fresh fruits and vegetables. Red meat was proscribed years ago by one or more health care professionals. As I am able to eat, w/o apparent side-effects, poultry, fish and some fruits/vegetables, they comprise substantially my entire diet, however tedious. Yes, I chat from time to time (I enjoy butter, cheese, tomatoes, etc.), but when I do, I invariably suffer consequences of one sort or another. Be well.
It’s a good blog, and you have nothing to lose by trying. In fact as Janice found out you may improve other things. I won’t accompany you on this journey as our RLS are at different stages but I can share that I saw distinct improvements in my RLS when I reduced my food intake overall, ate more organic, reduced the percentage of carbs and generally ate earlier. Those good habits have been temporarily shelved over the festive season and with a lot of people in the house but even before the Christmas meal has been prepared I’m looking forward to tomorrow when I will eat better and less. I do hope you see some improvement. I found my improvements happened gradually over a week or two and weren’t dramatic but I was up twice a night rather than 4 times and generally much calmer so I suspect if I’d gone further I might have seen a few more changes. All the best.
I don't see the need to be so resstrictive, I've eliminated my RLS without meds while increasing my consumption of red meat and no change in the amount of fried food, just a change away from refined seed oils. All I've eliminated is processed food including refined sugars, refined starches (like white flour including all supermarket bread) and fruit juices. And what a relief!
I am so with you . ending my love hate relationship with coffee, coming off almost carnivrore to introducing one veg at time, green snake beens gave me rls , ? do I keep persisting or change to something else. reduced siferol to 1/2 tablet one day a week real sloooow. Trouble is I have had some night free of rls but cannot remember what i did. I did a meditation thing (Alpha brain wave) asked the question and got mustard, looked it up and some people got benefits.
I’m trying to cure my RLS as well and based on some researches I believe our microbiome is the cause of our RLS symptoms rather than our diet itself, however for sure our diet affects the composition of our microbiome. Emerging number of researches are now available on the connection of the microbiome and neurodegenerative diseases, inluding Alzheimer’s, autism etc. Also it’s very likely food intolerances and allergies also caused by the disbalance of our microbiome.
Based on the microbiome test I made in Germany my microbiome nearly miss all ot the lacto and bifidobacteria which are producing neurotransmitters and also plays a role on the gut-brain axis and normally can be found in healthy people’s intestine (very likely this is a result of the frequent antibiotic usage when I was a child). The outcome of my microbiome test was that I’m predisposed to neurological diseases. On the other hand, I have high abudance of pathogen bacteria, especially ones that are producing toxins, so these are continously poisoning my blood, my organs and my entire body.
Now I’m trying several ways to reduce the pathogens and increase the good ones, but I can tell you from my experience this is unfortunately not as easy as taking antibiotics and probiotics.
BTW, I had those horrible “growing pains” in my legs mentioned in the blog post when I was a child. I literally scraped the wallpaper off with my fingernails and cried all the nights and my parents were so desperate and helpless and the doctor could only tell them these were growing pains and could’t help.
I had my mine tested at Medivere in Germany, but there are companies all over the world. However there could be differences between the tests, so it’s worth to do some research before you’d choose. The Medivere Mikrobiom Plus test I took had not just have information on the bacterial species, but also fungi, like candida etc, digestive residues and markers of malabsorption or maldigestation.
This picture was taken from mine and as you can see, my microbiome is lack of the most common lacto and bifidobacteria which have neuroactive properies. Interestingly these can be found in most probiotics I have taken several times in my life, even few months before my test, but it seems the bacteria in the prebiotics were not able to colonise my gut at all.
I really hope it works for you. I,too, was determined to stop my severe RLS. I followed a strict paleo diet for 9 months, Fodmaps for 6 months and vegan for 6 months. Sadly my RLS didn't improve. I also take Symprove probiotic daily.
Iron infusion made no difference.
I finally concluded that diet and iron make zero difference to my RLS.
However, there are many causes of RLS in my opinion, and diet is certainly a trigger for many.
I hope you find your trigger and that your RLS is fully controlled in the New Year.
Thanks Joolsg. I am fearful that diet may not be the answer for me as well but I don’t know what else to do as everything else has failed for me. I have never made a serious attempt at diet change to try and make a difference.
Also - I appreciate you sharing that iron infusions didn’t work for you as well. There are people on here that copy/paste ferritin and iron infusion information like it is the answer to all things RLS when in fact, low ferritin treated with iron infusions are only effective in approximately 50% of RLS patients - it is not a wonder cure or treatment. I think it’s important that people understand that there is no magic underlying causes or treatments that are effective for everyone.
I'm so sorry to hear that. I was in that situation in 2017 after augmentation and withdrawal from Ropinirole. I wasted 5 years on Oxycontin and pregabalin, spent years trying strict diets and I still had severe RLS. 36/40.I have been incredibly lucky that Buprenorphine worked instantly and stopped all RLS. I did have horrendous nausea but took medical cannabis and it completely eased off. Then I developed opioid induced anxiety & panic attacks but 25mg pregabalin counteracts that.
Have you tried Buprenorphine? It was my 'last chance saloon.' Methadone is almost impossible to get here in the UK and Buprenorphine is extremely difficult to get unless you have a GP willing to let you trial it.
No, haven’t tried that yet and Dr. Winkelman seems unwilling to try any other medications. My next appointment is coming up in a few weeks. I will be sure to ask about it though. Thanks for taking time to write back to me. I really appreciate it!
ok, will discuss with dr about trying 400mcgs if he will let me start it again. I get no break from my restless legs 24/7 it is killing me.......so sick from sleep deprivation and mentally ready to leave this earth.
I absolutely understand how you feel and that's why you have to do everything you can to get the increased dose of buprenorphine.
Try sleep clinics, even drug addiction clinics if you have to, and explain how this is affecting you mentally. RLS has the highest suicide rate of all neurological diseases because doctors fail to treat it effectively.
Do message Shumbah as she may be able to direct you to knowledgeable doctors in Australia.
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