Is there a link between RLS & weakness in legs?

[Elvisismycat]

I am wondering if there is any evidence of RLS causing weakness in legs?

[SueJohnson]

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

No but ropinirole can cause weakness in ones legs. I suggest you get off it, 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 and pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And some experts believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a... Also check out the recently revised NICE guidelines.

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.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal 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 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. 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.

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 without progesterone and sometimes even with it, 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 your gender and any other health conditions you have.

[Elvisismycat in reply to SueJohnson]

Thank you so much

[ChrisColumbus]

This may not be relevant to you, as you don't mention statins in your profile, but I found that Atorvastatin caused weakness in my legs - joints and muscles - amongst many other bad side-effects (including awful RLS!)

Incidentally, when looking at your profile I note that you haven't listed which country you are in: it's useful to include this if you seek further advice/information as the availability of drugs, treatments - and even the medical establishment's knowledge about RLS - varies considerably from country to country

[Elvisismycat in reply to ChrisColumbus]

Thanks so much

[ChrisColumbus]

I note that you've added the fact that you're in the UK to your profile.

Sue has given advice on coming off ropinirole (a dopamine agonist) and going on to gabapentin/pregabalin/low dose opioid and mentioned the newly revised NICE Clinical Knowledge Summary on RLS.

The new NICE guidance only came out last month and UK doctors - who have not in the past been trained in RLS - may not have noticed the change.

The new NICE guidance includes:

"Dopamine agonists were previously used as first-line treatment for RLS, but the high incidence of augmentation (suggested by a worsening of RLS accompanied by the need to increase the dose of dopamine agonist) and risk of developing impulse control disorder has led to the gabapentinoids now being first-line drug treatment."

"Clinicians should avoid abruptly discontinuing dopamine agonists in patients currently using these medications, as dramatic rebound RLS can occur. A long-term plan should be discussed, generally including the addition of a new treatment and gradual tapering off the dopaminergic agent, while monitoring for rebound symptoms related to RLS and mood."

cks.nice.org.uk/topics/rest...

The NICE guidance on starting gabapentinoids is still not up-to-date for RLS, so your doctor should follow Sue's outline.

You will find a lot more information on RLS-UK, which I'd encourage you to join. Checking ferritin levels is covered, which Sue has mentioned, but you might also like to check whether you are taking any other medications which could be making RLS worse:

rls-uk.org/medications-avoid

[S-1967]

hi

Yes I would be interested in finding this out

[SueJohnson in reply to S-1967]

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

What are you interested in finding out? I will be glad to try to answer your question.

[Zenawarrior73]

I quite often have well wobbly shaky legs since this started but I also suffer constant muscle twitching and cramps so I think it’s because my muscles are so fatigued