Sugar substitute Allulose having a profound positive effect on RLS
Hello,
My name is Steve Wake. I have been hounded by 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.
There is a lot of unknown about it still. 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 every natural over the counter remedy that there is, including sleeping with a bar of soap, to no avail.
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. Getting lots of sleep!
This is fabulous news! I have to know, Steve, how did you figure all this out? It had to be a long journey to get to where you are now. And do you have the same results when you consume it with food or in drinks, like if you put the 3tsp in coffee? Just curious! Take care and sleep well. -Melissa, rls team
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.Wow, that is so interesting. That must have been such a shock, to have cake and then see your symptoms improve so dramatically! I haven't been on the site for very long, and I'm still learning about RLS on a daily basis. The one thing that surprises me most is how everyone has their own unique strategies and tools that make a difference for them.
As an interesting example, someone shared recently that they have RLS symptoms a certain number of hours after eating trigger foods ... so they have decided to have small tastes of those foods at regular intervals, which resets the "timer" and keeps symptoms at bay. Wild, right? Here's the link if you want to check it out:
https://restlesslegssyndrome.sleep-disorders.net/stories/dietary-cycles-1
All this to say that experimentation, persistence and self-awareness are all so important in managing RLS. I'm so glad that you didn't give up, that you're still here, and that you're sharing your hard-earned wisdom here now. Keep doing the best you can! It sounds like you're really onto something. How has your doctor responded to all this? Are they supportive?
Hugs to you, and thanks for sharing with us! -Melissa, rls team
What a great discovery,
! I hope you are able to continue reducing your levels of Ropinirole with the increase in Allulose. I am never suprised anymore to learn what helps. So many people have found the oddest of remedies for RLS, sometimes by accident and sometimes through research and experimentation. What helps one person doesn't always help another, but it's always good to have options. For all we know about the nervous system, there is still so much more we don't know. Thanks for sharing what helps and please keep us posted. I will be thinking of you. - Lori (Team Member)
