Hi ! This is my first time posting. I’ve had RLS for over 20 yrs. I’m taking 2400mg of Gabapentin throughout the day/night & 2mg of ropinirole. Very often my symptoms get so severe that I can’t go to a movie theatre or even ride in a car over 30 min at a time because I can’t sit still. Within the past 3 years, I’ve developed this in my arms as well. I love chocolate and all the sweet foods that aren’t good for me. I tend to overindulge in these types of food and just can’t get it out of my head once I think of something sweet I like or see it… then I’ve GOT to have it!! Having said that, I also noticed that if I eat sugary foods my RLS will rear its ugly head within 2 hours of eating it. Anyone else experience RLS (RAS?) in their arms? Anyone else notice the connection to eating sugary foods and an ”episode” of symptoms?
Legs, arms, and sugar….😭: Hi ! This is... - Restless Legs Syn...
Legs, arms, and sugar….😭
RLS can affect the arms although if it is new to you and you haven't changed anything, you may be augmenting from the ropinirole.
You are likely suffering augmentation and severe triggering from the sugars, and probably a host of other triggers, if your diet is poorly structured.
Hi! I don't react to sugar, per se, but chocolates will exacerbate my symptoms in a major way. Even things like chocolate cookies make the RLS a lot worse.
I get it in my arms and I don’t take any medication for rsl. Also artificial sweeteners are a big no no for me. Lots of medications cause rls. What else are you taking.
Try the glutamine diet. That and GABA are helping me me to come off ropinerole.
Sugar is the least of your problems! You're probably augmenting on the Ropinrole - meaning the drug that was controlling your symptoms is now the devil that is increasing your suffering. There's plenty of good advice on getting off it. How is your iron status?
YES ABSOLUTELY! I can't agree more about sugar. I stopped a lot of other foods with great success but for some reason, sugar was the one thing that I couldn't 'do without'. For a long time, I have been 'addicted' to sugar. If I have some, I have to have the lot. And as you say, within hours, my legs lead me a merry dance. I do find that now I'm well controlled with buprenorphine, I can tolerate small amounts of natural foods that are sweet, like raisins, and pudding on special occasions, but if I go overboard with especially refined sugar foods, I can end up in a dreadful state.
I know there is a connection between diabetes and RLS and so it's not so weird to think that sugar itself can cause issues due to the fast absorption and high glucose effect. That was eventually what made me reconsider sugar to be the curse that it is for me. I believe there's also an inflammatory effect as well which is significant. I have to say though that the better the control of my RL is through medications, the lesser the reaction to eating a piece of cake for instance.
I also agree that you are probably augmenting. I experienced restless legs and occasionally arms 24/7 for years before learning about augmentation. I was on pramipexole. After weaning off it and the other meds I was put on, and finding buprenorphine, I have found some peace. I still watch what I eat, and find fasting from late afternoon until breakfast is helpful. I am 'afraid' of cheese which has set my legs off in the worst bout I've ever experienced and cause me now to consider carefully before eating even a tiny piece. I also learned that I was intolerant to gluten and lactose and avoid those as well.
I look at it as one would a car. We only put good petrol in a car- we wouldn't expect it to work if we put milk, or even water, in the tank, yet we put food in our bodies as if there is no connection between what we eat and how we feel/react. It's not easy, food has always been an issue for me, but with a lot of hard work over a long time with a brilliant psychologist, working on why I 'need' sweet things , I'm more sensible and controlled about food most of the time and my legs are grateful! I also have reduced my weight which has had a positive effect on my legs but other aspects of life as well!
Keep reading and educating yourself on RLS and all the wonderful advise and information available here. You'll have to trial everything yourself as we all are so individual in our reaction to things though we all have RLS. No one but you can know how something affects your legs and arms. Good luck. 
Oh you could be describing me! I get RLS throughout the day, my legs, my arms and just odd sensations. I am also on a slightly lower dose of gabapentin but a slightly higher of Ropinerole (3mgs). The best way I deal with it is to move, the arms, walk down the garden, round the house and at night, 2am in the morning a scented, lavender hot bath then back to bed. I hope this helps a little bit
It sounds like you are augmenting on the ropinirole.
Not on ropinirole now. Take pramiprexole which has been good for me. Still have nights (and days) when the effect is not as good but has improved a lot. Good luck- horrible thing to have!
Was on Ropinirole for many years; did manage 3-4 nights a week sleeping ok, but the rest of the time was very difficult.
Immense pain in legs, arms, neck and shoulders which moved around during the night (the pain that is).
After reading many posts about the augmentation the comes with Ropinirole I have started on Pregabalin; I think I used to take this when I started on the Ropinirole way back.
Anyway, I currently am having modest success with the Pregabalin - take 150mg around 8.00pm, then another 25mg before bed - not perfect as yet but hopefully with a bit of tinkering? At least the pain has gone.
Have recently had Ferritin levels checked and await consult as apparently not ideal, so again hopeful that this may point a way forward.
Really sympathise with you on this, I have had RLS all my life (first noticed when I was 7 yrs old, now 66) and the problem has been a curse for as long as I can remember.
Good luck in your search!
Nick S.
You can take the pregabalin all at one time 1 to 2 hours before bed.
First of all, please consult a physician for all your RLS concerns. See RLS.org for some world class doctors if you haven't already. Those listed are the best for severe RLS. I have seen both Dr. Buchfurher (LA) and Dr. Paceta (San Diego-Scripps) who are very good with severe RLS.
As you've read augmenting out of ropinerole (as I did) is very common for those with severe RLS. There are other options as you're learning but in my own experience, I was only able to get back to a normal life with Belbuca for my legs and arms RLS. No augmenting with these types of drugs but it is a big step to go to an opioid solution (assuming your doctor agrees and prescribes (very low dose of course). But do know, there can be side effects with any drugs including low dose opioid prescriptions.
I wish you well. This is a terrible disease but there is hope and there are excellent doctors. I wish the members would do more sharing of doctors who are good for cases of severe RLS.
And as others have already stated, diet is certainly something you should be managing correctly if you wish to better control your RLS.
In response to your request I will say that I agree with many of the people that have commented. You are on really high doses of both medications...much more than I ever was. For your symptoms to be this bad....your meds are not working. I can't imagine what other side effects you are having from them. Augmenting on ropinirole is definitely my opinion from my experience. You need to wean off of it. You will initially get worse or stay the same but it gets better. My opinion about the gabapentin again, it's not effective for your RL. Find a specialist. Keep reading. Try dietary changes. Everyone is different. I'm so sorry you are suffering so.
I have no qualifications other than being an RLS sufferer for the past 50 years. I too have serious attacks when it is impossible to sit down, let alone lie down and, for example, I had it for 48 hours last weekend! No sleep at all.However, I normally keep it at bay by taking 18mg of ropinirole over the course of the day, and one 100mg capsule of pregabalin. When things get really bad (yes, including arms) I take 1 or 2mg of clonazepam — powerful stuff! GPsdon't like to prescribe meds such as clonazepam, but persevere! Best wishes.
My goodness - 18 mg of ropinirole is 4 and a half times the maximum dose. You have definitely augmented and your doctor was extremely remiss in putting you on that extreme dose. You need to come off it and it's going to take you a long time as you need to wean off it slowly. I would change doctors. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... If you tell me where you live, I might be able to provide the name of a doctor.
I would add Vit B6 and B12, both very important for the nervous system. I have found that what I thought was RLS is actually anxiety. I am doing mindfulness, meditation, and breath work. I have never had success with any of the drugs for RLS. I walk, which is VERY important. Now there are nondrug treatments such as pressure boots and a foot strap that has helped many. Of course doctors do not want us to know about natural treatments.
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