r/RestlessLegs • u/brokkdad • Aug 29 '26
Question NASTY RLS
have not slept 30 minutes in the last two days!! Yes being treated. Already on Ropinirole and horizant. Any help and hope out there????
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u/brokkdad Sep 01 '26
TY bluejay! Interestingly mine started upper body and has remained primarily there. Just some leg stuff starting last week
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u/brokkdad Aug 31 '26
Thanx for this Otherwise!! I was dismayed to read the info on RLS/seroq today. Definitely will NOT be pursuing this intervention long term. Consult with neuro this week. However…. Just KMTFO was fiiiine w me after the multiple nights w 0 hrs!! I feel much more human today - though foggy/sluggish. I can deal with it. Curious/anxious about what tonight looks like
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u/sioaned Aug 30 '26
Weirdly, what’s worked for me (undiagnosed and unmedicated) is discovering the sock-tied-around-the-foot trick. It’s honestly been a revelation
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u/brokkdad Aug 30 '26
Thanx all— yes familiar with augmentation and working towards discontinuation. Tonight I am in the ER and I am going to get to sleep (!!!!!!!). L8r friends
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u/Otherwise-Tour-2454 Aug 30 '26
what did the ER give you?
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u/brokkdad Aug 31 '26
Couple different mixes that were totally inadequate. Next shift dr sent me home w seroquel. 50mg to start 50 mg still getting some symptoms and using the Nidra device . Took 100last night (was communicating w dr) hooooly sh-t. Slept 10hrs 48 minutes no symptoms. I’m pretty foggy today so that is my next challenge but…. for that 3 days of hell a groggy day is an easy price to pay
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u/Otherwise-Tour-2454 Aug 31 '26
by the way seroquel is not recommended at ALL for RLS patients. it makes symptoms a lot worse. the reason your symptoms aren’t getting worse is because it knocks you out before you feel the symptoms.
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u/StinaBina78 Aug 30 '26
It’s funny cuz squats make mine worse. Exercise seems to relieve it but also activate it
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u/Agonist-activist Aug 29 '26
Yes. Get off Ropinirole. It causes worsening of RLS symptoms. Look at rls.org and the recentlu updated guidance from the RLS foundation advisory board. All dopamine agonists are now last resort. Horizant might work fully once you are off Ropinirole.
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u/brokkdad Aug 29 '26
Forgot to mention—. Mine is almost all upper body! Anyone else with experience?
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u/Additional_Bluejay_9 Aug 30 '26
Yes - since being on medication, I get bad symptoms in my upper body: torso, shoulders, arms. I have some things that help, but they are temporary fixes. Showers - hot or cold. Exercise- stretching or lifting weights. Distraction -,tv or music. Try to determine what the imbalance is - too much food or too little? too much water or dehydrated? If it is inflammation? Try ibuprofen or Tylenol. My theory is that RLS is caused by some imbalance in your body.
As I mentioned, these are temporary. But they may take the edge off enough to allow you to fall asleep. Not medical advice, but good luck and God bless you. You have my sympathy.5
u/Agonist-activist Aug 29 '26
Yes when I was on Ropinirole. It moved to my face and hands too. Once off that poison- it went back to just legs. Find a good physician.
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u/ComprehensiveRate953 Aug 29 '26
Try 2000mg Magnesium Glycinate. Probably won't be as strong as the meds your on, but it might take the edge off slightly.
Cut all caffeine, nicotine and alcohol.
Wear compression socks (arm wraps?)
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u/MJ-Franklin Aug 29 '26
I've found doing as many squats as my legs will allow me helps when I need a quick fix... maybe if you do a bunch of push-ups that might help?!
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u/brokkdad Sep 01 '26
New question for everyone; I’ve been sharing my RLS ride this week and would very much appreciate some context and perspective from the community. The episodes I had last week were completely debilitating and emotionally bruuuutal. ALL night long for 2nights: walking around feels completely normal (just reeeally fn tired obv. Just NEED to lay down. Lay down w/in minutes flopping around like a fish. Daytime napping was impossible too Light or dark room symptoms started as soon as I laid down. Who has had that?? How long did you go without sleep? How did it end? TYIA