Restless Legs Syndrome (RLS) Discussion Board

Hello,
My name is Steve Wake. I have been hounded by severe RLS and an associated version of it that is involuntary rhythmic leg jerks every 23 seconds when active for the past 27 years. I am 66. I have been taking Ropinirole for over 20 years.
I joined this group because I have found something that is helping control this awful condition to a profound degree. Allulose. It is a low calorie sugar substitute. Several weeks ago I was taking 6mg of Ropinirole per day. Now I am down to 3mg per day with the addition of 3 level teaspoons per day of Allulose. I usually add it to coffee or water. 3 teaspoons between noon and 6pm. And I am sleeping much better! With only Ropinirole I would get maybe 2 1/2 hrs sleep, get jerked awake, stay awake for about 45 minutes, then go back to bed. Rinse and repeat 3 times a night.
I do not know if Allulose is having the effect it seems to have on it's own or is some kind of booster for Ropinirole. I do know that Allulose, like sugar, raises dopamine levels. I am still experimenting. Today I am going to reduce my Ropinirole to 2.5mg and see what happens.
I have been fighting this curse for 27 years and have tried everything, including Methadone, which worked but left me completely emotionless and that is no way to live. I have tried lots of OTC methods to no avail.
I have been experimenting with Allulose for about 10 days now. It was interesting how I happened upon trying it, but no room for that here. I am going to keep experimenting with it and adjusting the Ropinirole dose, and I am keeping a log. So this is not a verified, double blinded professional study. I am just a guy that has been tormented with this evil condition for over a quarter of a century and I just may have stumbled across something that has a profound effect on controlling rls symptoms. I wanted to let others know as soon as possible. I hope it works as well for other people.
If you decide to try Allulose make sure it is all Allulose with no other ingredients. Amazon has various listings for it.
I am anxious to hear if this works for anyone else. It has been a godsend for me so far.

I'll try to make the story as short as possible. I am 66 and have been overweight most of my life. 2 years ago I decide to lose the extra weight...again. The only way I could do it was cut out the carbs. I did and went from 270 lbs to 215 lbs. As I lost the weight the rls/jerks kept getting worse. I was up to 6 mg of Ropinirole a day. I would go to bed at 10 pm, wake up by 1 am, stay awake 45 min to an hour, then go back to sleep for 2 -3 more hrs, then do it again. It was rough.
Then March 23 (my daughter's b-day) I splurged and ate 2 HUGE pieces of chocolate cake with cookie dough icing. I felt like crap but got the best night's sleep in a long time. After some internet searching I found a post that said that keto-type diets made rls worse. After what I just experienced that made total sense, at least for me. I kept eating the cookie dough cookies (sugar, brown sugar, flour, and dark chocolate morsels) and I kept getting good sleep. I got the Ropinirole down to 4 mg and still slept well. I also gained 15 lbs almost overnight.
I was at a crossroads. Someone in an unrelated video mentioned Allulose as helping with blood sugar levels and was also almost calorie free. I did some internet searching on Allulose and found that it helps increase dopamine. So does sugar, so I gave it a try and it seems to work. I am still experimenting with it. I do not know if it works without Ropinirole, as I am still taking it. I tried reducing the Ropinirole to 2.5 mg last night, went to bed at 10 pm and rls woke me at 4:30. So 2.5 mg Ropinirole and 3 teaspoons of Allulose in a day wasn't quite enough for me. I usually add a teaspoon with coffee or diet soda. I must state though that I have pretty severe rls, to the point where my leg(s) jerk on their own, about every 23 seconds starting in the afternoon if I try to relax at all. Other people may have different results. Allulose may work for people with occasional rls all by itself. I have no way of knowing.
My situation may change again as I seriously reduce the carbs and eating in general to get the weight back off. I had rls as a kid every once in a while. It stopped about puberty and came back with a vengeance when I was 39, after a stay in a hospital. 27 years straight now and it's been a constant fight. Came close to giving up and checking out countless times. But I am still here and still fighting this evil monster.

Welcome to the board, Steve. Thanks for sharing your story.

Diet has long been implicated for many people - while others report no changes when they change their diet. Fascinating (though evil) disease, isn't it? I've wondered if the gut microbiome isn't involved with iron in some way - inhibiting or encouraging - transport of iron to the brain. Maybe allulose impacts that. Of course, that is just a fanciful idea of mine - no proof at all!

6mg of ropinerole was a seriously high dose and 3mg is still pretty high . The RLS experts advocate that 1 mg should be the max daily dose. It is very possible that you are augmenting. You can read about this on the Augmentation Forum. I was taking 5mg at one stage and spent 10 months minimally tapering until I was off it. My tapering was supported with cocodamol and pregabalin and I still use these two meds with good results.

You are now finding some relief with Allulose and this is great.
Have you discussed tapering off the ropinerole completely with your doctor and how he might support you to do this.

I wish you well as you continue to experiment to fight what is indeed an evil monster.

Update
Almost 8.5 hrs of sleep last night with only one rest stop. YAY! I used 4 teaspoons of Allulose, 2 in coffee and 2 in diet coke and water yesterday. 3 mg of Ropinirole total.
It has been 24 years since I was last active in an rls group. After reading a lot of posts I realized I had not really mentioned my particulars, so here goes. When my rls came back at 39 it did so with a vengeance.It was after a hospital visit with a blocked artery. To this day I wonder if it came back due to stress or if I was given something at the hospital. I will never know. When it came back it was different. It started out as "normal" rls, but before long it changed to involuntary jerks every 23 seconds that would get progressively worse if I did not get up and move around. It would start with just a foot jerk and if I ignored that it would keep getting worse until the jerking was my entire leg up to the spine. Sometimes it would continue even after standing. From then on "normal" rls was very rare. It was over a year before I got meds to help. Mirapex worked, but caused insomnia. Then when I would get to sleep I would have the most horrible nightmares. Ropinirole was my savior, and I have been taking it ever since. It has not been perfect by any means, but without it I would surely be long gone.
I have found that alcohol has little effect either way. Coffee seems to help. Sugar seems to help a lot. And low carb will really aggravate the jerks. The Allulose actually works better than sugar.
In published rls literature I have read that alcohol, sugar, and coffee aggravate rls. So I would guess that if sugar aggravates your rls the Allulose may not work for you. I have no way of knowing. I can only report what my experience is.

The sugar that you read about in the literature is almost certainly normal table sugar, which is sucrose, a 12 carbon sugar.

Allulose is a rare natural six carbon sugar that is almost, but not quite, chemically identical to fructose. Fructose is the sugar found in corn syrup (and sugar containing sodas) and many types of fruit. Some people may be sensitive to these but I haven't heard of very many with RLS who avoid eating fruit.

Hello again,
Another update. I got another solid 8 hours of sleep last night. I had 4 teaspoons of Allulose during the day and 3 mg Ropinirole spaced from late afternoon to 9 pm. I do not know the mechanism of how Allulose has a positive effect on rls. I believe it is actually working with the Ropinirole. Having dealt with pretty severe rls for over a quarter of a century I am thrilled to be getting 8 hours of sleep!
I did a little research and found this website: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8467252/
It is a very thorough study on Allulose. The following excerpt is taken from that website:

"d-Allulose has also been demonstrated to have several beneficial effects on human health. It has been reported to have anti-obesity [39], postprandial blood glucose levelreducing [40], anti-diabetes [41], and anti-atherosclerosis [42] functions."

So Allulose has other positive attributes for me, aside from helping me sleep, as I am overweight, I have high blood glucose levels, early diabetes, and atheroslerosis.

I hope this can help anyone with rls that is taking ropinirole, as it sure seems to have helped me....a lot!

Hello

First I would like to thank the RLS foundation for this forum. It is very helpful to me and to many other people suffering from RLS.

It seems allulose is not available yet in Europe but I would definitively try it when possible.

For some reason kiwi fruits and blackcurrant (from frozen) can provide temporary relief to my RLS. I suspect something with C vitamin although C vitamin alone is not as efficient. Often it is enough to get a bit of sleep. I use it when the urge to move comes up but it only works when the RLS is not too strong. If the symptoms are too strong then nothing really seems to work.

I had a thought the other day...

When I was augmented (taking about 300% more than the preferred max dose of pramipexole), I was able to reduce it tremendously without a lot of issue. I just couldn't stop it. Once I got to a certain level (about the max dose), I couldn't go lower without issue. That could be what is happening.

Nathan T wrote: Mon Jun 03, 2024 4:20 pm Hello

First I would like to thank the RLS foundation for this forum. It is very helpful to me and to many other people suffering from RLS.

It seems allulose is not available yet in Europe but I would definitively try it when possible.

For some reason kiwi fruits and blackcurrant (from frozen) can provide temporary relief to my RLS. I suspect something with C vitamin although C vitamin alone is not as efficient. Often it is enough to get a bit of sleep. I use it when the urge to move comes up but it only works when the RLS is not too strong. If the symptoms are too strong then nothing really seems to work.

Have you found any other foods or strategies that help you manage your symptoms effectively?

It's just that my friend doesn't like fruits in general so maybe there is something else

Interesting how Allulose / Sugar makes your symptoms better. I'm 67 with a lifetime of RLS and the one trigger I've always had was Ice Cream in the evenings. I went through throat cancer last year, dropped from 195 to 170 lb., and my RLS was greatly diminished. It didn't last but was a blessing at the time.

I got off Clonazepam for a year and ended up on Ropinirole. My doctor kept increasing the dose and finally put me on 5 mg Requip ER until I was a mess and was put back on Clonazepam. I believe I was severely augmented and receptors maybe permanently damaged. Things have only got worse over the next ten years and multiple drugs added to my regiment. I only say all this to point out how each of us is so different. Best of luck minimising Ropinirole.

Hi Steve Wake
Fascinating information on the effect of allulose on your symptoms.

Your legs jerking involuntarily every 27 seconds when active is a separate condition from WED/RLS, though the two conditions often occur together. The separate condition is called Periodic Limb Movements in Wakefulness, or PLMW.

You didn't mention augmentation in any of your posts, but I think you are probably aware of it?

Are you still getting benefits from allulose? It would be very helpful to others to know. Hope all is well with you.

I've been doing the sugar thing for over a decade. It works. At least it works for me. I previously had no idea why it worked, but I now believe the associated production of dopamine makes it effective. I've used sugar along with various RLS meds. I have only used sugar when symptoms broke through while trying to sleep or sleeping. It was more effective in the earlier stages of RLS, when my symptoms were more moderate. The sugar could beat the symptoms down to nothing, and in most cases give me a full night of sleep. Now that my symptoms are more severe, and particularly while augmented on pramipexole, it has been less effective, but still provides significant relief. Initially I used Mike and Ike Original Fruit candy. That was an excellent way to get a lot of sugar into my body in a short period of time. I've used raisins, marshmallows, brown sugar cubes and cookies. These days I only use cookies, and I only eat them when I'm sitting up after getting out of bed due to symptoms. I used to eat the candy, marshmallows, sugar cubes and raisins while lying in bed. I would stop when symptoms subsided. The danger was aspirating some of this stuff as I fell back to sleep. That happened a few times, and it's infinitely more frightening than RLS. I don't do that anymore.