So glad I found this site. It has already been so helpful!
I developed RSL after recent arthroscopic knee surgery. From what I have read on this site the RSL started due to the emetic included in the anesthesia.
I don't understand why the RSL was triggered at this particular time, and not previously with other surgeries when the emetic was requested. I would like to understand why.
I have a family history of RSL - my mother and my brother. I have knee pain and I am unable to elevate my knees during the day without take ropinirole and would like to know if and how other people have been able to address this problem.
Thanks so much!
Written by
MickieGirl
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Welcome to the forum. You will find lots of help, support and understanding here.
RLS can start at any time and often starts from a trigger like your anesthesia even though it didn't trigger it before.
Did you just start taking ropinirole when your RLS started and because of it? If so that was a mistake.
You seemed to be saying that you took ropinirole to elevate your knees which I have never heard of.
I am going to assume you did just start ropinirole because of your RLS and give you advice accordingly.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Your doctor should not have prescribed a dopamine agonist like ropinirole (or pramipexole - mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.
Since you just started it will be a lot easier to come off it now than to wait until this happens.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly especially since you just started on it. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment as I mentioned which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute
Watch the video by Dr Winkelman recently posted on here. Ropinirole WILL cause the RLS to become much, much worse and it causes gambling and Impulse spending in up to 38%.Our advice would be to get off it now and switch to pregabalin or gabapentin.
I am not a medical professional. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Your medicines are fine.
It was a mistake for the reason I mentioned above - that it can cause augmentation.
For your low ferritin, take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.
I have 2 recommendations for a neurologist although neither are affiliated with the Northwell Health system of physicians in NYC
Harini Sarva (212) 746-2584 New York City neurologist but you might have a long wait to see her.
Jennifer Durphy (518) 262-6611 is an Albany neurologist. You would probably only need to see her in person once and then could do telehealth and you may not even have to see her in person at all. You can call and ask.
If you don't use either one, ask before setting up an appointment if they are familiar with and follow the Mayo Updated Algorithm on RLS. Otherwise you might get a doctor who would just want you to stay on ropinirole or switch you to another DA like pramipexole (mirapex) or neupro or might not prescribe a low dose opioid if you need it.
I have an appointment with Dr. Sarva at the end of August; FYI Dr. Durphy requires that the first appt be in person . In the meantime, I am waiting on PCP and hoping she will prescribe the gabapentin. If not I will wean myself off the ropinirole and utilize other methods to treat the RLS until I get he gabpentin prescribed.
Hey Sue and Joolsg, Just keeping you in the loop as to my journey. I found a physician on Long Island and in the Northwell system -Melissa L. Bernbaum, MD, Neurology, Neurophysiology, Sleep Medicine, Epilepsy. Once I confirmed with the office (they checked with her) that she follows the Mayo clinic updated algorithm for RLS, a cancellation for this coming Tuesday was suddenly available (otherwise it would be November ). Not sure if I was just lucky or what...I let you both know if she was helpful so you could potentially add her as a viable physician for treatment of RLS.
Can you clarify when you FIRST developed RLS? If it was only recently, after knee surgery, did your doctor instantly prescribe Ropinirole?If there is a family history, you are genetically predisposed to RLS and it can happen at any age.
Ropinirole should NOT have been prescribed recently though as it is no longer first line treatment because of the very high rates of Augmentation and Impulse Control Disorder.
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