restleg question

[Toypoodle123]

does anyone get bothered by restless legs in the day time,or standing in a queue,it certainly does not just happen when I lay down,

[ChrisColumbus]

This - having RLS earlier in the day - can be a sign of augmentation, something that the majority of sufferers using a dopamine agonist - pramipexole, ropinirole, rotigotine - eventually suffer.

I'm not sure whether you're still on the rotigotine patches that you said that you'd been on for years? (I know that you're now/also on buprenorphine).

Here's a couple of articles from RLS UK on augmentation and recommended medical treatments:

rls-uk.org/augmentation-reb...

rls-uk.org/medical-treatments

[ChrisColumbus in reply to ChrisColumbus]

BTW, while I rarely suffer from RLS now (after over 50 years of it) - since I supplemented with magnesium, got off statins, cut back on sugar & caffeine and started avoiding aspartame - it can still come on occasionally during the day if I sit too long in one position. I have to get up and/or lie down and it quickly goes. And I've never taken a dopamine agonist or any other meds for RLS so for me it's clearly not augmentation

[LotteM]

That is not typical of RLS. Chris has given you links, but maybe first look at rls-uk for diagnostic criteria. If it is only posture related, it may e.g. be a spinal issue. One of the criteria is that there is no other disease or problem that may cause your symptoms.

Make a good list when symptoms occur and then consult your gp.

[SueJohnson]

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

Yep you are suffering from augmentation. Ropinirole which is what the patches are and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. It 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.

To come off the patch ask for ropinirole tablets and reduce by .25 mg every 2 weeks or so. (to reduce using the patch you would have to cut a 1 mg patch into sixths which would be hard to do since a 1 mg patch is the equivalent to 1.5 mg of a ropinirole tablet). 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 to increase your buprenorphine temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.

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

Or you may find that the buprenorphine covers your symptoms. If you have any breathing problems check with your doctor because taking both can increase this.

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 atHttps://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, 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.

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.

[Joolsg]

I thought you were off the Neupro patch and just taking Buprenorphine.What other meds are you taking?

If you're still on the Neupro patch, the daytime RLS is likely to be drug induced worsening ( augmentation).

If you're off the Neupro patch and only taking Buprenorphine, it may be the dose is too low. What dose are you taking and in what form? Patch, pills or buccal film?

[TheDoDahMan]

Yes, I believe that just standing in a queue is not quite as effective at banishing that "restless leg feeling" as walking is. Is that what you mean?

[shaughnna]

I’ve had RLS for over 50 years, and up until now it only came on at night. Now I occasionally get it during the day, but I think that is due to the fact that my days and nights are mixed up.

[Lettucenotforget]

Yes, I get RLS randomly during the day but since taking Gabapentin it has improved both day and night to a level I can tolerate. At least now I can sleep at night!!