This rls is driving me nuts.

[Anya737]

I had rls a few years ago. That pasted but now I'm dealing with restless feet. It happens almost everyday and it's driving me nuts.My dr started me on gabapentin and I was taking 600mg when my rls started up again with a vengeance. I'm now taking ropinirole 2 at night. It makes me really really tired within a half hour and I can't do anything but go to sleep. Before my dr upped my ropinirole to 2 a night, she said maybe I would do better with acupuncture. I told her I'm not interested in that. I'm afraid my dr isn't going to be able to help me. Any suggestions will be most appreciative.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Forget acupuncture. It won't help.

600 mg of gabapentin didn't help you because it wasn't enough. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin.

And now you are on ropinirole which is no longer the first line treatment for RLS as it eventually leads to augmentation which you really don't want. Which means you need to come off it.

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 if needed.

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 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. If you haven't bee on it long it may not be so hard.

Dopamine agonists like ropinirole, pramipexole (Mirapex) and Neupro (rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks and your symptoms have settled.

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 as you obviously do, 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). As I said above 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? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and any other health conditions you have.

If you tell me what city and country you live in I may be able to give you the name of a knowledgeable doctor.

[Anya737 in reply to SueJohnson]

Sue, thank you for very informative response. I'm going pass this information along to my dr and see what can be done. Thank you again for your help.

[Joolsg in reply to Anya737]

I agree with SueJohnson. Follow her advice.As you're in USA and your doctor isn't up to date ( he should know about the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance that relegates Ropinirole and other dopamine agonists to 'end of life' scenarios)- ask him to use the link below.

The RLS charity- rls.org set it up. Expert RLS doctors can be consulted by your doctor for advice.

Here's the link

rlscurbside.org/

And join rls.org. It has quarterly magazines, lots of up to date information and free webinars. And a list of Centres of Excellence for the treatment of RLS.

The USA has more experts than any other country.

This website is run by RLS-UK but follows the latest research and treatment from the top US specialists.

[SueJohnson in reply to Joolsg]

Monthly magazine.

[SueJohnson in reply to Anya737]

I can definitely suggest a knowledgeable doctor since you live in the US.

And Joolsg's suggest to join the Restless Legs Foundation at rls.org is an excellent one. It costs $40 and has a monthly magazine plus lots of information on their website.

[Legquake]

Hi Anya. I tried acupuncture and it didn't do anything to help. I have been to the Mayo Clinic and see a neurologist regularly. Although I have taken gabapentin, ropinirole works better for me and it has fewer side effects and interactions. I take 1mg about 30 min before bedtime. I would take whichever works the best but I would see a neurologist. Sometimes a condition may have a different root cause. For example, mine might be caused by an issue with my sciatic nerve or a nerve in my back. Insurance will pay for an MRI after I do six weeks of physical therapy therapy. Best of luck, I know this is an aggravating condition to have.

This may help: drugs.com/compare/gabapenti... but there are more articles out there. Ultimately, I would just do what works for you.

[Anya737 in reply to Legquake]

Thank you so much for your reply. I appreciate any help/suggestions.

[SueJohnson in reply to Legquake]

Please don't suggest ropinirole. I know you said you aren't going to change until it stops working which is your prerogative but since it eventually causes augmentation please don't suggest it to others.

[Legquake in reply to SueJohnson]

It has been linked to augmentation at high doses after ~6 years which is why those who suffer from RLS should see a good doctor. Although these boards are helpful to those experiencing challenges in life, we must be careful about giving advice as there is a fine line between discussing what worked for someone and the unauthorized practice of medicine. I have physically been to the Mayo Clinic and I am under the care of a neurologist. I noted what I was prescribed by the Mayo Clinic and my neurologist but I have extenuating conditions which a reader may or may not have. Yes, gabapetin is often used but can cause serious side effects and has a number of interactions. yourdoctors.online/gabapent...

[SueJohnson in reply to Legquake]

Check out:

the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

jcsm.aasm.org/doi/pdf/10.56...

relacshealth.com/blog

I also recommend you join the Restless Legs Foundation at rls.org especially if you are in the US. A membership is $40 and they have lots of information on their site and a monthly magazine.

[SueJohnson in reply to Legquake]

What are your extenuating conditions?

[SleepDepriv3d in reply to Legquake]

It is not only at high doses. I had severe augmentation at a very low dose of pramipexole. I was only taking it for 18 months. Augmentation started within 6 months at the lowest dose 0.125, I increased to 0.250 and 12 months later I had symptoms 24 hours a day. Augmentation can happen at any dose and is especially dangerous for young people.

[Joolsg in reply to Legquake]

This website is run by RLS-UK. And they are firmly against dopamine agonists.So your advice is contrary to RLS-UK advice and the top expert advice set out in Mayo Clinic Algorithm and the AASM guidance.

You may be fine now. We ALL were fine on dopamine agonists. Until they made our lives unbearable.

And dopamine agonists WILL turn on you. It's simply a matter of when. Not IF.

So please do not condemn others to the hell of augmentation/ICD and withdrawal.

[Legquake in reply to Joolsg]

I am in America and have been to the Mayo Clinic in Phoenix, AZ. They actually prescribed ropinirole but at a low dose. I have been on it for two years now and am free from effects of RLS. Journals note augmentation often occurs at higher doses after a lengthy period of time. Maybe I will experience augmentation, maybe not. It should be up to the patient and his/her doctor to determine the plan of treatment. Medical recommendations vary. If you want to recommend gabapentin, that is your choice but it can be a trade-off patients need to discuss with their doctors and be their own advocate. yourdoctors.online/gabapent... Farewell.

[SueJohnson in reply to Legquake]

Who is your doctor?

[Bat3353]

lookup a specialist in your area go to the RLS.org and find one there

[Anya737]

Thank you Bat. I'll look into that.

[SueJohnson in reply to Anya737]

Since you are in Maryland I strongly suggest you go to the Quality Control Center which is one of only 12 in the US and they consist of the top experts in the US. It is located at Johns Hopkins in Baltimore and you want to see Dr Christopher J. Earley and ONLY him. He is the only one associated with the Center.

Specifically you don't want to see Dr. Sara Benjamin nor Dr. Aruna Raoat Johns Hopkins.

Also you might want to join the Restless Legs Foundation at rls.org . A membership is $40 and they have lots of information on their site and a monthly magazine. And that allows you to join the RLS Support Group in Rockville. Contact Dr Louis Siegel who happens to be internist at [e-mail] They meet both in person and virtually