Hello all ! I have suffered from this horrible condition for 30 years. I have been on every medication known to help. It affects my life day and night! I even experience in my arms now. I currently am on anywhere from 5 to 8 mg daily of Ropinirole. And thats not helping. Long story short I accidently found a medication that worked after having Shingles 4 times. But the amount trouble to get the medication is crazy. In all my years dealing with this Methadone has been the ONLY thing that has giving me relief! So long story short I switched doctors and was told Methadone isnt practical for RLS even though they can look back in my medical chart and see how its helped. So I was make to with draw off it and when I asked to try something else I was told that hey cant help me since Ive tried everything already. And I need to try to get into a neuroligist asap. They know I have an appoinment with one and it was gonna take 6 months to see them. I have seen before and tried what they asked and didnt get any relief! Drs need to be schooled more on this disease! You can study it till your blue in the face but if you dont experience it for yourself...... You have no idea the hell it puts people through! I have begged them all to help and I just get blowed off!
Severe Restless Leg: Hello all ! I have... - Restless Legs Syn...
Severe Restless Leg
You don't say what country you dwell in, but anywhere you live, you have strong case for litigation.
It is purely criminal what you are enduring.
Basically you are suffering severe augmentation.
I suggest you read up about that condition on this site, and especially Sue Johnson's replies to many similar situations.
You need to get onto opioids ASAP .
Find a neurologist who is prepared to prescribe them.
Depending on where you're from ,we may be able to help.
Good luck.
I have atleast 6 more months until I get a chance to see a neurologist and that was the soonest. I have seen neurologist here before and didnt get anywhere. Once again was told I tried everything
As Madlegs said you are suffering from augmentation. 4 mg is the maximum dose of ropinirole. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
This means you need to get off it. Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
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 post back here as the advice will be different.
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. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and yes you need a low dose opioid like methadone or buprenorphine 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.
As I mentioned the first line treatment for RLS is now Gabapentin or pregabalin. (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 that 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. 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, 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.
Where do you live? If in the US what city and state? We may be able to provide you with the name of a doctor who is knowledgeable about RLS and willing to prescribe opioids. Can you afford to go private if needed?
Illinois United States
Quincy Illinois
Dr. Mari Viola-Saltzman - Chicago, IL. She does telehealth services so you may not have to drive there as it is aways from where you live. But she is a well known expert in RLS and is considered one of the best in the world. 847-570-2570
TYVM
Any drs in St Louis Mo?
Dr. Shalini Paruthi - sleep medicine doctor who is on the board of the Restless Leg Foundation 314-205-6030.
Methadone and Buprenorphine are highly effective for refractory RLS and are listed in the Mayo Clinic Algorithm.As Madlegs says, you have a strong case for negligence. And as Sue advises, the reason your RLS is so bad is because Ropinirole is worsening the disease. Any doctor who can't realise you're suffering a very, very common side effect of Ropinirole shouldn't be prescribing it. You're way above the maximum dose.
If your doctor hasn't arranged blood tests and hasn't warned you that Ropinirole makes RLS worse, do see a lawyer.
Where are you?
You should also file a side effects report via your country's side effect register.
Follow Sue's advice. Reduce Ropinirole by 0.25mg every 2 weeks. Ask for a low dose opioid to help you through the withdrawals. And raise serum ferritin above 100ųg, preferably 200ųg by iron pills every other night or iv iron infusion.
Methadone is available for RLS in the USA, if you can find a knowledgeable doctor. So let us know where you live.
I was on Methadone for years and the took me off cold turkey saying it not practical for RLS. I even asked dr to please research treatment for RLS and she told me no. Ive tried everything and thats all she can do.
That is cruel, barbaric and unethical.You definitely need to see a doctor who can prescribe methadone.
Join rls.org and ask for a local doctor who is knowledgeable.
Dr Berkowski may be able to direct you to someone in Illinois, as he is in Ohio.
I know there are strict rules about prescribing out of state, but if you visit him face to face, I think you can then continue to see him via zoom or Internet appointments.
I was on a low dose of Methadone for years for the RLS and it saved me. New dr said no matter what she will not give it to me for RLS. I live United States Illinois. My labs are fine
They will not give me the Methadone back even though they can look in my chart and see
Don't waste your life trying to educate a doctor who doesn't even care about you. Make an appointment tomorrow with the doctor Sue recommends. You are near one of the best RLS doctors in the world so take advantage of it if you can afford it. A bit of travel won't hurt you as much as RLS.
You are not alone! My experiences have been much like yours. The ONLY thing that works for my refractory RLS is methadone. I do keep checking all of my iron levels, but they are always within the accepted RLS levels, making iron infusions unnecessary.
It too two neurologists, and going through every other available medicine for the second one to listen to the experts. Once he prescribed methadone, I had the first relief in my life, and I was 60 years old by then. So much unnecessary pain and suffering!
You have my best wishes, and hope that you find a doctor who will take the experts advice and prescribe what you need.
My doctor put me on Ativan. It is not a neurological condition. But it works !!
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