Tips to manage restless legs

[Legsarerestless]

I have had this condition for many, many years. Give me tips on what to do is medicine is taken late aand legs and arms won't let me fall asleep.

[SueJohnson]

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

I see you list pramipexole on your profile so I assume you are taking it. Are your aware that 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 won't work. And one expert 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...

How much are you taking? .5 mg is the maximum dose so if you are taking more than that you are already suffering from augmentation. 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. If any of these fit your situation, reply back here and we can give you some advice.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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, 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.

[Joolsg]

Follow SueJohnson advice. Join rls.org.Get off ALL dopamine agonists ( Pramipexole, Ropinirole, Rotigitone).

Once you're off dopamine agonists, the RLS becomes less severe.

There are better treatment options noe.

[D4nc1ngqu33m in reply to Joolsg]

Hi l have suffered with this condition before the medical professionals new what it was I'm so down at the moment l have just stopped Premiprexol 0.18mcg 4 times a day nightmare results my legs are just getting worse my doctor as prescribed me with premagablin 50mg lunch time 150mg night time along with 50mg tramadol for night time god l wish there was something out there other than medications l know I'm going to have to up this medication has it isn't really preventing the attacks l could list so many things I've tried over the years but we're unaventfulI'm so fed up it's ruling my life,🙄🙃☹️

[D4nc1ngqu33m in reply to D4nc1ngqu33m]

I have actually done cold turkey stopped my Premiprexol dead to much messing about forr me taking one here and there reducing them yes my legs have worsened where l haven't slept for days but I'm coming to the end of the side affects next step sorting the doses l need of premagablin and tramadol l do not wish to stay on tramadol but it's the only thing that calms my legs ☹️

[Joolsg in reply to D4nc1ngqu33m]

0.18 x 4 a day is 1mg of Pramipexole.That is twice the maximum dose.

Stopping cold turkey is extremely dangerous.

Tramadol is the ONLY opioid that also causes drug induced worsening, so should be used with extreme caution.

You would be better switching to another opioid. Long half life opioids work better for RLS, so ask for methadone or Buprenorphine.

You are now completely drug free so your RLS will be severe for at least a month while your body deals with severe withdrawals.

Read all the posts.

Raise your serum ferritin above 100ųg, preferably 200ųg/L via pills or iron infusions after full panel, morning, fasting blood tests.

The average pregabalin dose is around 150 -200mg, taken at night only.

[Joolsg in reply to D4nc1ngqu33m]

You're new to the forum. Has your GP advised you about Pramipexole causing your RLS to become worse? Did he/she warn you about Impulse Control Disorder? Gambling, impulse buying etc?Does your GP know you have stopped Pramipexole cold turkey?

It is extremely dangerous and you may need to go back on it and reduce slowly.

Iron treatment is extremely important for RLS. Your GP has to arrange full panel, morning, fasting blood tests and raise your serum ferritin above 100ųg/L.

So arrange tests now.

Also, many medications trigger or worsen RLS, including anti depressants, anti histamines, statins and PPI gastric meds.

It will be helpful if you start a new post so all members can help you. List all your meds.

[SueJohnson]

To expand on what Joolsg said to come off pramipexole reduce by half of a .125 tablet 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 but not as much as you would if you were suffering from augmentation.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, 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 pramipexole 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 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).

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.

[Eryl]

Why manage it when you can eliminate it. I've eliminated mine by avoiding all processed food.