Low fodmap diet works!!!: Hello. I've... - Restless Legs Syn...

Restless Legs Syndrome

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Low fodmap diet works!!!

Hello. I've been suffering from this nightmare for two years. I read about this diet and it worked immediately for me. The link between our intestinal health and rls is proven. Look it up. It's worth it!

81 Replies

Yes, yes, no argument from me. This is one of those topics we need to tease out and discuss till we're blue in the face. I truly believe that one day scientists will know what an "ideal" gut microbiome(s) looks like and how to achieve it. In other words the ideal number of lactobacilli vs bifidobacterium etc. Not only ideal gut bacteria but scientists are finding that gut viruses are crucial as well. Quite fascinating. Since we don't know what that ideal gut microbiome is (which allegedly would greatly reduce incidence of disease including RLS) or how to get there we are working blind. We ALL, or most of us, have to agree not to wait for a miracle and instead to tinker with our diets, exercise etc. Not all of us will be able to, but those of us that can should and then report back. So you have had amazing results with FODMAP. The idea behind FODMAP is to cut back on the food known to feed our gut bacteria - mostly fiber and complex sugars - right?. When we feed the bacteria in the gut they digest this food and give off gas. The diet was created for people with IBS who have "dysmotility" and have trouble moving this gas along and thus end up with cramping and discomfort. Less gas less discomfort. Though it was intended for people with IBS it seems as though it also helps people with RLS and other conditions...why? I don't have an answer. Could it be that FODMAP alters the composition of our gut bacteria in such a way that it reduces the symptoms of RLS either through less inflammation or more iron availability? Could it be that people on FODMAP eat less calories per day and that calorie restriction then up-regulates our dopamine receptors as it does in experiments with mice?

Whatever the case may be, I agree with you that ultimately the answer to RLS and many diseases lies in our guts/gut microbiome.

in reply to

You are clearly well informed. Honestly the 'why' has become less important as all Im after is a good night's sleep!

hudson48 profile image
hudson48 in reply to

Me too not much to ask for is it

hudson48 profile image
hudson48 in reply to

This sounds good I have ins and real so what have you cut out I don't have sugar now but need to know more

hudson48 profile image
hudson48 in reply to hudson48

Ibs I meant

in reply to hudson48

I saw another post of yours Hudson and your diet sounds really good. Really! Actually sounds like mine. Like you, I think my biggest mistake is eating at night. And it seems that when I over-eat at night then the RLS kicks in. Since I don't get RLS every night I believe I can get an idea of what my triggers are and over-eating is one of them.

Sometimes I need to take an antacid called Zantac and that will trigger RLS for about four hours. Are you taking any such medications? Melatonin, hormone replacement therapy, anti-depressants, certain heart medications (ie statins), sugar substitutes, and metformin can make RLS worse than it has to be. Also certain antacids as I mentioned.

Stopping these medications might be a quick fix to your RLS problems. Or stopping eating after 7pm might help. Otherwise improving your RLS symptoms I feel is a slow, grueling process. Supposedly fasting (meaning less than 600 calories a day) once a week or severe calorie restriction (less than 1,000 calories a day) EVERY day will help to up-regulate our dopamine receptors. And our dopamine receptors need up-regulating. Anaerobic (not so much aerobic)exercise is supposed to up-regulate our receptors. You have to google what kinds of exercise are considered "anaerobic." Like I said, grueling and not a quick fix. As a person starts on a very low caloried diet their RLS may even initially be worse.

Have you tried ferrous bisglycinate? Ferrous bisglycinate is a highly bioavailable form of iron. When I have RLS and I'm ready for bed and I want it to go I take one 25mg capsule of ferrous bisglyciante on an empty stomach and within an hour the RLS is gone. It's only goes for the night. I have to repeat whenever I get RLS. I'm not anemic and I have healthy stores of body iron yet it still works. However, if you're taking a lot of melatonin or a lot of anti-depressants you may need two capsules. You may need more than two but you can't take more than two. As a matter of a fact if you do try the ferrous bisglycinate you can only try it for a few nights then you must call your doctor and get his permission to continue.

Like I said in my previous post, iron is my emergency med, I prefer to keep the RLS at bay through diet. Plus my RLS has never been severe (except when I was taking melatonin then I had restless body) and I never took the DAs or opiates or any prescription drugs which can potentially down-regulate my already lousy dopamine receptors even further. So if you're stopping any of these medications your journey might be a little harder and longer. Surprisingly, substances like melatonin and anti-depressants and antacids do not down-regulate our receptors they just compete with dopamine while they are in our system and make RLS symptoms temporarily worse. They do NOT down-regulate our receptors. It's the drugs that make our RLS symptoms better, like Mirapex, or Rogatine, that will down regulate our receptors and make it more difficult to get back to baseline when we stop them.

hudson48 profile image
hudson48 in reply to

I have to take statins buscapan omoprosol statins tramasapan loperamide thyroxin every night have to medically now amitritelene for RLS all stable I in control at minute but thanks for advice

in reply to hudson48

RLS is under control! That's everything!!! Congrats

hudson48 profile image
hudson48 in reply to

Thanks and I do a night at a time pray it don't come back I kill my self l not really

Backtobasics95 profile image
Backtobasics95 in reply to

You're doing the low fodmap diet?

in reply to Backtobasics95

No, I just try to have the majority of my diet be raw. Including raw fish. So I'm not vegan. Meaning little to no processed foods. Sometimes I'll eat cooked vegetables and a piece of bread (about once a week). But some of the vegetables I eat, like asparagus, are probably not allowed on the FODMAP diet. It has proved to be the most significant positive change to my IBS symptoms. I still have what I consider to be chronic fatigue. I'm working on it, stay tuned...

Backtobasics95 profile image
Backtobasics95 in reply to

You should start the low fodmap diet then. I'm on day 2. The hardest part of it is dinner. For brekky, I put half a cup of oats and a tablespoon of quinoa in a bowl. Microwave with water and milk and serve with a banana. Fills you up really good. Coffee goes well with it. I don't know about noticing a difference in a matter of two days like the guy who posted the forum said. Some people may take years. Oh well I suppose it's just a ton of experiments.

in reply to Backtobasics95

Hey there. It's been working well for me (2 months or so now). I find that if I have symptoms I can go back and remember and usually I've missed one tiny detail (onion powder on something that I didn't prepare) and that's the culprit. I've also found that eating until I'm stuffed can be bad. I had my iron checked a month ago and it was low normal ferritin 70. I'm going to go out and get myself on some iron and see what happens. Any change at all for you?

Backtobasics95 profile image
Backtobasics95 in reply to

Only been two days. I'm gonna stay patient and stick to the diet with discipline. Not expecting to feel the results until a month or so from now

in reply to

What did it?

How brilliant. I may give it a go. I've been following a paleo diet for ages, excluding dairy, caffeine, alcohol, gluten, salt and eating only nuts, seeds, fruit, fish, chicken and meat but I may look up foods excluded on FODMAP and see if it makes a difference.

Anything is worth a go if it stops this nightly torment.

Jools

Joolsg profile image
Joolsg in reply to Joolsg

AAGH, just seen that cabbage, onions, leeks and garlic are excluded on FODMAP. Fruit is limited to 3 portions a day. My diet will become even more restricted but I'll give it a go for 2/3 weeks and see if it helps and I'll report back.

Jools

in reply to Joolsg

No wait those are considered nutrient dense foods. You have another condition besides RLS which you probably should be mindful of. A long time ago now I read a book called "Eat Right for Your Blood Type." The most fascinating part of the book for me was his discussion of auto-immune diseases and blood type. He indicated that it was mainly people with Blood type B that fell prey to the "exotic" auto-immune diseases such as MS and even more rare ALS. Doctors poo pooed him but time has borne this out. Anytime I meet someone with one of these auto-immune diseases, including Sjorgren's I ask them what their blood type is and it is always B. I found a demographic study on MS and according to it about 50% to 60% of people with MS are blood type B. That may not sound like a big deal but blood type O is the most common with 50%+ of the world population having it. Followed by Type A, then B, then AB. The vast majority of diseases will follow these percentages as well - 50% O, 30% A, 15% B and 5% AB. But not true with MS. Only about 15% of people with MS should have blood type B yet upwards of 50% do. Anyways, the book lays out a diet for blood type B and all blood types. You might want to consider that diet. In reality, all the diets the author recommends are incredibly healthy. My husband is blood type B so I know a little bit. Red meat and fish are good but not chicken nor sunflower seeds. Blood type B is supposedly the only one that does well with dairy products. Blood type A is the only type that does well with coffee. I'm an O, a caveman, the original blood type, so I should be following the Paleo diet.

Are you still off the iron? Any improvement or deterioration since being off?

in reply to

From what I've understood the only iron worth taking to impact your ferritin levels dramatically is given by a doctor as an injection.

Joolsg profile image
Joolsg in reply to

I'm blood type O positive and have MS and severe RLS so clearly an exception to the rule above. I tried being off iron for 10 days and no difference,perhaps a slight deterioration. I will still try FODMAP as I'm not having much success with the drug route and am reluctant to take more codeine or oxycontin or targinact if I can find a diet that works. If it doesn't, I'll have no choice but to find other drugs.

Jools

in reply to Joolsg

Well I tried transdermal (patch) iron and it too works. It doesn't seem to pack as much of a punch initially because I lay in bed and think to myself "hmmm I'm still feeling a niggle" which I don't after an hour of taking the oral iron. BUT then I feel like my sleep is deeper and more uninterrupted. Like you I tend to wake up every two hours and pee...but then fall right back to sleep. With the patch I sleep 4 to 6 hours straight. And when I do awaken it's almost like that feeling after surgery where you feel like no time at all has passed...yet six hours has.

Graham3196 profile image
Graham3196 in reply to

Hi Its very interesting about the blood type relationship with auto immune disease but is RLS an auto immune disease? Whatever I would recommend that we dont try to hard to understand why but just do a brief experiment and see the result. The FODMAP diet is out there and seems to work for a few people so give it a 12 week trial. I used to love garlic, and I probably still do, but I hate watching TV at 5am In my experience the FODMAP hasn't worked perfectly for me and I am working on a modification that has promise. Again I only have me to try it on but I will keep you informed. In the meantime get started on the FODMAP diet and see what happens.

in reply to Graham3196

Can't thank you enough Graham for being a guinea pig and potentially helping many of us. And for explaining that it's a work in progress and not perfected yet. I do have IBS, since childhood, like the RLS. The RLS has been nothing compared to the IBS. The RLS was mild and infrequent my whole life until I started supplementing with melatonin in my early 40s and that was 10 years ago. Within a week I read about the iron and that stopped the melatonin induced restless body. Once I stopped the melatonin the RLS went back to mild. Anyways, the IBS has been worse for me and it's only in the last year that I feel that I am more in control of it than it in control of me. A mostly raw food diet (including raw fish) has been key along with insoluble fiber in the form of bran. If I didn't cheat I would probably be close to 100% better. So no reason for me to switch to FODMAP at this point.

Graham3196 profile image
Graham3196 in reply to

Thanks. With both IBS and RLS you should be a definite for the FODMAP diet but if your OK now then don't rock the boat.

I am amused that you eat raw fish. I used to joke that I would eat live spiders if it would give me a night's sleep. Luckily there is no known diet that includes live spiders!!!

Cheers

Graham

Hi Graham, I just had an amazing conversation with my daughter- I know this thread it 2 years old, but you've been sitting on the answer all this time! I read out what you said about live spiders and she said 'Well, that's why no one has found the cure for RL then, it must be because no one has tried the live spider diet!' in fact Graham, can you test this for us???? :)

Hi unfortunately I have found the the FODMAP diet is almost as good as eating Siberian Rat Eating Tarantulas alive with a spicy sauce. So I am compelled to stick with it.

I started with Gluten free diet then added the FODMAP diet and I still have a bit of RLS but not very often and not very severely.

I am still looking for the perfect fix. My daughter had nightly TLS and then was found to be anemic so had an iron transfusion - no more RLS at all! I tried an iron infusion and got my ferritin up to 343 but no improvement to my RLS.

Good luck catching the spiders!

Graham

I'm getting really stuck into Fodmap now. I was only avoiding certain things before. Now I have to really devote the next few weeks to work out if it will help. Also I'm starting a course of 8 weeks meditation...'Mindfulness for Health- a practical guide to Relieving Pain, Reducing Stress and Restoring Wellbeing' by Vidyamala Burch and Danny Penman. It's a book with a DVD to listen to and has wonderful results on pain. I don't know how it will work or help at all with RL but only time will tell.

I can't go on like this with one or two hours of disturbed sleep a night even with oxycodone! So it's into these two lifestyle changes with a vengeance.

Thanks for the laugh! It does help. :)

Its good to buy the Monash University App for your phone. I think its about AUD10 I think there are several available but Monash is considered the centre of FODMAP

The App is frequently upgraded as more and more foods are measured for FODMAPS I am pretty conservative about what I eat because when I started with the diet the list of allowables was pretty short.

I avoid wheat, lactose, caffeine, gluten and alcohol.

Good Luck I hope you are one of the lucky ones for whom FODMAP works.

Thanks Graham. I hope so too. I'm up jiggling and trying to distract but not much good. Anything to stop this awfulness. I've downloaded the App and it looks terrific. It's $9.95 or so. Great value.

Don't forget to keep a really accurate food diary. It is a huge help when you need to know what you ate two days ago.

Tamaroy profile image
Tamaroy in reply to

I am blood type AB, am allergic to lots of different things, drives be bonkers, but so do my legs, have suffered from the dreaded rls for over 40 yrs now, take tablets but from time to time get augmentation and have to reset which drives me nuts, I am overweight now, any ideas on diet? Regards

in reply to Joolsg

It's worth it! It's a big shift but it's worth it.

in reply to Joolsg

Jools you must try it. The low fodmap diet can take some getting used to but it's really not that bad and the impact is almost immediate. If you start today by tomorrow you will begin to feel the difference.

Joolsg profile image
Joolsg in reply to

I have no problem following restricted diets. I already exclude so much. I'll just have to add more spinach and Pak Choi instead of onions and cabbage. I agree that it's worth a try. Thanks,

Jools

in reply to Joolsg

We are fighting for our sanity.

Thanks! :)

My partner noticed food combining has helped ( i.e. Not eating carbs and starches with proteins in the same meal) so I can see why this would.

Also, eating chocolate at night causes massive restlessness for h too.

"But I like chocolate" says my inner 3 year old child.

Soz but dont believe for a minute that is the awnser

in reply to Jeanniebeannie

Curious. Is it safe to assume that you are an RLS sufferer? If so, what have you tried that relieves your symptoms?

Hi ive had rls all my life quite severe at times.i dont smoke barely drink and eat quite healthy drink lots o water too so only medication helps control it but it will never go away in my opinion

in reply to Jeanniebeannie

Then you have nothing to lose. Please read this: ncbi.nlm.nih.gov/pubmed/215...

Jeanniebeannie profile image
Jeanniebeannie in reply to

I dont have ibs and neither does people that i kno .also had rls since childhood so what was the awnser then . Nothing to lose reading it but still dont believe its that simple soz .

in reply to Jeanniebeannie

Please try it for 2 days and see. I don't have either IBS or SIBO and yet it works for me. This diet cuts out gluten, dairy and HFCS. It's not easy and does exclude foods that are genuinely healthy but at the same time it's not that hard either. You can not try it and continue taking drugs that cover the issue or you can take charge and give it a go. When you'll get back to me in 2 days, you will understand. Don't be skeptical when you have nothing to lose and your LIFE to gain.

Joolsg profile image
Joolsg in reply to

hi jorgesvoice,

All the fodmaps diets I've looked at allow cheese and butter, which I have always regarded as dairy. Normal milk isn't allowed but lactose free is allowed. Do you eat cheese and butter or do they cause problems? Bit confusing,

Jools

in reply to Joolsg

Actually I found that most cheeses are fine for lactose intolerants! Any cheese with 0 sugars is fine! Most cheeses have 0 sugars. Butter is also fine! Go to store. Buy a lot of cheese! Enjoy! Stick to it strictly and you will feel the difference! Here is the one I follow religiously: ibsdiets.org/fodmap-diet/fo...

Jeanniebeannie profile image
Jeanniebeannie in reply to

Cheese yogurts and mayonaise tangerines all make me bloated so dont take all that unless i want to suffer but if it works for you then goid luck thanks

Graham3196 profile image
Graham3196 in reply to Joolsg

The FODMAP diet I follow from Monash University only allows Camenbert, Brie and old hard cheeses. I find a cheese called "Strong and Bitey Vintage" is OK but all other cheeses should be avoided. The theory is that the lactose decomposes during the maturing process. Testing for FODMAPS is expensive so there are probably lots of things you can eat that haven't been approved. Treat the approved list as gospel.

DONT CHEAT not even one thin wafer of a banned substance. Some say you eat "healthy" fruit and veges. Apples pears lychees plums apricots etc are poison to your body. Bad luck. If you have serious RLS giving up some food is a small price to pay and if you really get sick of it you can also return to your RLS.

I am so happy for jorgesvoice. She is another who has benefited immediately. I took about 12 weeks before I was convinced that I was improved.

Remember the low FODMAP diet is a transition. You start by elimination of almost everything and then re-introduce one new food and see what happens. Pretty quickly you will build up a long list of things you can eat and hopefully a very short list of foods you cannot eat.

I think the recommendation is that you are symptom free for five days before you start to "Challenge" with other foods, one at the time. I have had problems with challenging and finding foods I can tolerate so I am still on the elimination phase after 2 years. I expected this to be unhealthy but I have lost weight (as you might expect) and have a good heart and, of course, I feel so much better because I get a lot of sleep.

in reply to Graham3196

Thanks. It should be noted that lactose converts into sugars in the cheese process. This is why if a cheese has 0 sugars it has 0 lactose and is generally safe.

Graham3196 profile image
Graham3196 in reply to

Thanks. I will experiment with other cheeses but I can be very happy with my rice cakes and Camembert in the meantime.

Joolsg profile image
Joolsg in reply to Graham3196

I will find the diet very easy as I have followed a strict paleo diet for 7 months. Fodmaps allows far more foods, including gluten free bread,rice, quinoa, oats, corn, cheese, butter, salt. I lost about a stone ( 14lbs) on paleo as you do not eat any carbs or grains so I will actually put weight on if I follow fodmaps.

Now I've looked it up in detail, it'll actually be like "party time" for me to follow it as there are so many additional foods I can eat which are banned on paleo.

The only high fodmaps foods I have been eating are onions, mushrooms, leeks, cabbage, avocado, coconut yoghurt, almonds and cashew nuts so, in theory, it shouldn't take long to see if it works for me- although I followed it today and I'm up after 2 hours sleep with the jumpy legs as usual so I don't think it will work as quickly as it appears to have done for you jorges voice.

I think, from reading all the posts on here over the last 6/7 months, that what works brilliantly for one person may not work for another, so just like the various drugs out there, different diets will work wonders for some but have zero effect on others.

Onwards and upwards

Jools

in reply to Joolsg

uhh, you're up.

Joolsg profile image
Joolsg in reply to

Yup. As usual, I manage 1or 2 hours then legs start jumping. Usually then up for 2/3 hours with jumpy legs then get another 2 hours sleep. I average about 6 hours sleep a night in 3 sessions which is why I'll try fodmaps.

in reply to Joolsg

Don't give up so easily. You forgot to mention garlic. Good luck.

Joolsg profile image
Joolsg in reply to

I won't jorgesvoice. As I said earlier, it'll be very, very easy for me to follow as I'll only have to give up about 4 or 5 foods that I eat now which are high fodmaps. I will actually be able to eat so much more than on paleo

Jools

Graham3196 profile image
Graham3196 in reply to

I have to be quick this morning but I have interesting news. Even on the FODMAP diet I rarely enjoyed a full night's sleep. It was a vast improvement but I was often walking for up to an hour per night.

On the advice of a dietician I investigated a "low chemical diet" This means low in many man added chemicals but importantly many foods have certain chemicals that are natural in the healthy foods but not tolerated by some people. That's us. I have been on the low chemical diet for about 20 days. For the last 16 nights I have not been woken up by RLS! I haven't slept so many consecutive nights since 1995 as far as I can remember. My treatment followed the normal course for this diet. A couple of nights with no effect a couple of really bad nights (Zero sleep) and then success.

This diet has been developed by the Royal Prince Albert Hospital (RPAH) in Sydney Australia for some other problems. I was disappointed to find that they knew it helped some people with RLS but didn't publicise it apparently because they have not been able to conduct adequate clinical trials. They don't want to risk their reputation unless they are sure.

Its not an easy diet but again its only an elimination diet and it leaves very little else to eliminate, I eat rice, maple syrup, Uncle Toby's Oats, Camembert,one orange per day, one greenish banana (NOT ripe) per day, canned salmon (NOT Tuna) and meat (rare). I plan to reintroduce pears over the weekend.

There are more foods available but I wanted to start with success if it was possible.

Please go to slhd.nsw.gov.au/rpa/allergy... and read up about it.

I have to go so read it up and please let us know if you plan to try it. I would say that if you have started the FODMAP diet and it is 100% effective then you re there and dont need to try this but its nice to know that if the FODMAP diet becomes less effective there is another step you can take.

If we can find enough success stories then we might be able to help the RPAH justify the clinical trials.

It must be stressed that its a pretty severe diet and your doctor should monitor your health and you probably need a dietician so its not entirely free. The RPAH can provide the dietician service at a price which is probably the same as other dieticians and they have done consultations over Skype for people in remote areas of Australia so they said they should be able to arrange a consultation for someone outside of Aus. Of course it might be at 3am your time but your probably awake then anyway.

Read up on this. I hope it will help a large proportion of us.

Cheers

in reply to Graham3196

Yes, excellent. Keep pulling us back from the edge Graham. My RLS is always on the edge these days, like a snake waiting to dart forward. The edge is actually a coveted place to be. Because that means little to no symptoms. You and I have found that through diet we can pretty much stay in that precarious situation. And when I do go off the edge, as you know, the iron pulls me back. I don't consider iron to be anything other than an emergency med. I truly believe I get more than enough from my diet and I don't consider it a particularly "curative" mineral like say magnesium or taurine or certain herbs like turmeric. Or even zinc which has anti-bacterial and anti-viral properties. Iron = life, the way air and water do, but I would never supplement with it but for the RLS. Anyways, like I said above, I believe there is a connection between our guts and our brains and the closer we get to that ideal bio-zoo the farther away from the abyss we will get.

Sometimes people believe it's inherited because they've had it all their lives, when in fact it may be because they've been eating the same things their parents ate all their lives. Many things considered 'healthy', may not be when it comes to the gut, like certain fodmaps, especially if one's gut bacteria is imbalanced in the first place.

And by the way, one can have SIBO and have NO gut symptoms.

I have tried every elimination diet in the book. Also, some people do have conditions that prevent this kind of diet. So, good luck with your experiments. :) i know it is not for me, for sure. I am 90% controlled with my meds, and not going to rock the boat, and zI have to follow a very strict diet because of ulcers and gastroparesis.

in reply to nightdancer

I can certainly see how your existing gastrointestinal issues would limit you in that regard. However, the link has been well documented and for those of us that can take the non-medication route it only makes sense as a preliminary to a lifetime of meds. Please see:

ncbi.nlm.nih.gov/pubmed/215...

rlcure.com/restless-legs-an...

There's something to this. It is not a game for anyone.

Always been interested in trying this out. Lately I've been vaporizing weed every night, which is wonderful don't get me wrong, but it doesn't treat the cause. I only do it at night because I can't be high in the daytime with work and university, so my RLS is shocking during the day. Of the prescribed medications I've tried, the ones that are affordable don't work, and the ones that do work are waaay to expensive. Hoping this diet will give some form of relief in the daytime. It's always disheartening to see that something like this doesn't work for everyone, but I suppose everyone is different. I personally believe there is something wrong with my stomach which is causing RLS because my dad always had stomach issues. Thanks for sharing, I will try this.

What is diet you doing to ease TLS

Well jorgesvoice and tredlight,

I have followed FODMAPS rigidly for the 10 days since you posted the info and it has not improved my severe RLS in the slightest. In fact, my RLS has been worse than ever with only 4/5 hours sleep a night on average and never more than one hour's sleep at a time.

As I told you, following FODMAPS was incredibly easy for me as I already followed a very strict paleo diet. I've enjoyed eating the cheddar cheese though.

Clearly this diet works for you and I'm really delighted for you.

I suspect that for others, like me, it won't make a blind bit of difference.

As we've seen time and time again on this site, what works for one sufferer doesn't work for another.

Thanks for sharing the info though,

Jools

in reply to Joolsg

Feel so bad Jools. I'm not doing the FODMAP diet but I have heard success stories with it so I gave Jorge the thumbs up. You and I are cavewomen, Blood Type O, so if there's any credibility to that theory then the Paleo diet you were on should serve you well. I tried the Paleo diet for a while but all that cooked protein made me feel not so well. I needed to go raw. Plus there's been evidence that humans were lousy hunters - back about a million years ago - and that we relied more on wild vegetation and wild grains than previously thought. I love my diet and look forward to each meal. I'm constantly at the food market because fresh vegetables don't keep long. Endive, kale, arugala, radicchio, cabbage. My intestines have never felt so good.

Anyways, you took a nice long break from the iron in order to see if it might be interfering with the gabapentin. Maybe go the other way now? I think in the long run Gaba might make RLS symptoms worse? It scares me when I read how someone goes on Neurontin/Gabapentin for pain and develops RLS either while on it or stopping it and they never had RLS before in their lives. What the heck is that all about? The good news is it sounds like after about a month their symptoms disappear.

As I mentioned before there is an iron patch out there called "PatchMd Iron." I've used it about 7 times now and have lived to talk about it. It doesn't pack as big of a punch in the beginning as the oral iron but I feel like I'm in a deeper sleep longer. The patch contains 45mg of ferrous bisglycinate (more than the oral pill), plus vitamin C, vitamin A and another supplement. I would tell anyone who is thinking of trying it to talk to their doctor first. Plus it's at least $12 plus $3 in shipping and that's only a 30 day supply! The oral bisglycinate is $6 for a 60 day supply. I don't want people spending $15 only to find out their doctor disapproves.

in reply to

Where have you seen that Neurontin/Gabapentin has caused RLS while taking it or stopping it. ?

in reply to

Nope can't find it.

in reply to

Can you try harder to find it. I would like see what was said and where is was said. A member who is maybe about to start Neurontin/Gabapentin just for pain, would be worried to read your statement. I have never ever heard of that med causing RLS either while taking or when stopping it. Its not on the list of not to take meds. So, i think members should know if what you said is true.

in reply to

Yep, I read it and remember it well. The poster pleaded for help as to why the Neurontin was causing her RLS. A responder said that her AND her mother developed RLS when stopping the Neurontin but assured her it would pass and not to get worked up about it. The poster came back and said but she had symptoms while taking it not when stopping it. Then there are hundreds of stories of nightmare withdrawal from Gabapentin. I don't like that word withdrawal as you know. The gabapentin leaves your body after a few days but then it takes months for your body to mend and heal from the down-regulation of the gaba receptors. So since you asked, unless the person is dying and can be on the gabapentin for the rest of her life then I wouldn't start with it. I HATE the idea of taking a substance several times a day, every day, in the thousands of milligrams, without then having the ability to judge your need for pain relief. I would rather have an emergency painkiller that is stronger but that I could take as needed. And no matter what drug you take for pain or RLS you can NEVER sit back and relax and pray that the relief continues. Day in day out as long as you are not bedridden you have to actively search, research and try different things for pain relief. You would be shocked at the amount of pain relief that a person can get by wrapping the painful area with a non-breathable latex wrap. They cost about $10 at sporting goods stores or even drug stores. Every athlete knows this yet not a single doctor. As far as I'm concerned no one on here should be recommending gabapentin for pain or RLS. It's no different than the DAs.

in reply to

What i will say is, there are always exceptions to the rule. BUT, no where have i come across some one saying that it caused them to have RLS, and those who do take it seem to do fine on it and it gives them the relief they need. There are some who cant take Gabapentin, its doesnt work for them etc. But that happens in all meds for some people. I give people the info on what meds are available and tell them to discuss it with their doctor and that is the right thing to do, and that includes Gabapentin as on the list for RLS relief. I would never tell anyone what to take, its not responsible to do that. Its giving people the info so they and their doctor make the choice which is best for them.

nightdancer profile image
nightdancer in reply to

I also say that for people that Gabapentin did not work for, it was not the med for them. Did not make the RLS worse, but it did not make it better, so the RLS symptoms were still there and getting worse. In 21 years of MY groups, I can speak to what Elisse says. Many people get relief from it, and let's not forget it is also an anti-convulsant used by epileptics. it is like ANY treatment for RLS, what works for on does not work for the next person, including iron, and other supplements, plus any med used for RLS. One's person's magic treatment is another's worst nightmare, and that holds true for supplements and prescription meds, and over the counter meds.

Joolsg profile image
Joolsg in reply to

Hi Tredlight,

Mmm, strange, White Buffalo suggested I stop iron for a while in another separate post some time ago. Pseudonym?

My iron levels are 115 so actually good even though my brain is not benefitting from it and don't think I'll go down the patch route. Not even sure the iron patch is available here in the UK.

I think I'll stick to my cavewoman diet which is mainly fruit and veg, nuts and seeds with small amounts of chicken and fish as I actually feel very healthy on it ( apart from the RLS of course).

happy sleeping,

Jools

in reply to Joolsg

Feeling healthy is a great barometer for assessing a diet plan. Hopefully it will take you back to your 6 to 7 hours of sleep a night. Muchas suerte.

in reply to Joolsg

Hi there. I'm very sorry to hear this. What about your iron levels? Have you checked those? I want to help you.

Joolsg profile image
Joolsg in reply to

Hi jorgesvoice,

My iron levels were 115 so they were fine. I tried the 25mg iron bisclycinate at night on empty stomach away from other meds and that didn't help. Also tried no iron for a few weeks and that didn't help either.

I simply think that there are a number of us with severe RLS for whom diet/vits/exercises and even most meds will not help. Possibly because of other factors- in my case I have MS and most of my scars/lesions are in my lower spinal chord. I am a firm believer in vitamins and diet though ( I've been gluten free for 23 years) so I am convinced it will help other people with RLS. Even if it just helps one person, it was definitely worth sharing the info, so thanks.

Cheers and happy sleeping,

Jools

You can't expect improvement after 10 days. I'm doing it for 3 months and not expecting any improvement until week 12. RLS is a monster of a disease so you can't expect it to go away that easy. Tbh, I am just sick of going to the doctor asking for this and that. I've just bought some cannabis seeds online and I'm currently reading a book teaching you how to grow your own. It's illegal where I live but I don't care anymore, neeeed relief

I Hear you backtobasics.

I've been on strict paleo for 8 months and it's made no difference to my RLS but all I have to do is omit onions,leeks,avocados,cabbage and garlic from my existing paleo diet which is easy enough for 12 weeks. It's just that a number of people stated FODMAPS worked for them immediately/within days. I've also tried cannabis and kratom- cannabis gave me severe panic attacks. It's illegal where I live as well, but as you mention, with this disease, you'll do anything to stop the jumpy legs.

Dam that's unlucky that cannabis does that to you. Btw DEFINITELY stay away from kratom. It does not work long-term, even if you alternate between different strands.

About the cannabis and your panic attacks. That happened for me when I smoked a strand high in THC. Like 25% high. Maybe you did the same. High THC weed is kinda like vodka. You wouldn't have a pint of it would you? I recommend trying a strain around 10-15% THC if you can. Don't go over 15%. Kinda hard tho coz I have to grow my own, try it, if it doesn't work that good, then I have to grow a different strain which takes like 2 months.

Ok so I followed this diet for 2 weeks then due to unfortunate events had to stop temporarily. I am now back on it and have been so for 5 days. For me what makes the diet so hard is literally EVERYTHING in the supermarket contains traces of milk solids or soy. You have to KNOW what you are eating. Look at the ingredients list, if there's something fishy, do some research on how the product was made and find out that what you are eating is acceptable. So, after learning all that myself, there are several things I don't eat. I buy a different kind of protein powder (au.iherb.com/pr/NutriBiotic...) and get my fruit from different supermarkets. My verdict?

Guys, I think this works. Think. It's been 5 days of disciplined eating and I am feeling a 10-20% improvement. Not a lot, but an improvement this early into the diet wasn't my expectation. Now I'm not saying this could work for everyone, but if you've tried everything, surely you could try this?

I really just had to share this because with dedication and persistence, we could all benefit from this diet.

in reply to Backtobasics95

Hey, keep it up! It really hasn't been too tough for me. I switched to Almond Milk and Most cheeses are completely OK!! The toughest thing for me was the Gluten. Also, it's tough to avoid the Onions and Garlic as those are used in almost all meats. I make my own food and when I eat out I'll have simple things that won't contain onion/garlic powder. If it says "spices" and doesn't specify, you can bet there's onion and or garlic powder. Also, I've noticed that if I eat a late dinner and I'm still full when I go to bed, I'll have symptoms. Any other questions let me know and I'll get back to you. AND THE BONUS IS....Gluten free/Dairy free is overall healthier anyways!!!!

Backtobasics95 profile image
Backtobasics95 in reply to

Yes yes yes I totally agree with you. I'm not a fan of almond milk so I have lactose free milk. But, whatever works works. It has been quite a shock discovering what certain companies put in their products and how they make it. So how long have you been doing it? How much improvement have you made?

in reply to Backtobasics95

I've been on it for almost 3 months. It has made a world of difference! I do also have bad days but I can usually attribute it to a dietary lapse. Things like eating too much before bedtime. Avoiding too many carbs at night. I wasn't a fan of Almond Milk either but if you go 4 days without any milk at all, Almond Milk will taste just fine. I see that a lot of people on here are looking for or discussing different neurological meds for this. These may work but I feel like all those do is mask an issue with our neuro-transmitters that are getting out of whack due to the low-grade inflamation in our small intestines caused by...Gluten/Dairy. I've re-introduced things (like apples) slowly. And so it goes..

Backtobasics95 profile image
Backtobasics95 in reply to

Yeah absolutely, good to know. For breakfast I have oats, quinoa and poppy seeds. You only need half a cup of oats, two tablespoons of quinoa and a sprinkle of seeds. Put in a bit of water and a bit of milk then microwave for 2-3 minutes. I chop up a banana and stir it in with everything and it really fills me up. I think our intestines are so damaged that it is going to take a long time for them to recover.

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