Muscular Spasms. Is this really RLS?

[Baldrick123]

I was put on Ropinirole for RLS about 20 years ago. For at least the past 10 years or so it hasn't really worked very well. Currently I experience twitching/involuntary motion of my toes which usually leads to my entire foot going into a cramp-like spasm. I thought RLS was an "unbearable sensation that compels you to move" but I am experiencing actual spasms/convulsions of the toes and feet. Could it be that I have something other than RLS?

[Joolsg]

No. That is common on Ropinirole during augmentation. I used to scream in agony and jump out of bed to prize my toes and feet out of the spasm.I've replied to you about drug induced worsening ( augmentation). You have to get off Ropinirole.

Best recommendation by experts in USA is to reduce by 0.25mg every 2 weeks with help of codeine, tramadol or oxycodone or cannabis to deal with worsening RLS.

See my response to you.

Read RLS UK website, click on all links about Augmentation and treatment.

You may need to see another decent neurologist.

[Joolsg]

Since getting off Ropinirole, I have had zero toe or feet spasms. I now have zero RLS and sleep 8 hours a night. By ignoring my neurologist and pushing for better treatment after researching this site and the advice of the top US experts like Dr Buchfuhrer and Dr Berkowski.The UK doesn't teach RLS at any stage of medical training.

The Mayo Algorithm is the best resource.

mayoclinicproceedings.org/a...

[Baldrick123 in reply to Joolsg]

I know every patient is different but what did you get put on to replace the Ropinirole?

[Joolsg in reply to Baldrick123]

Initially, after advice from people on this forum, I was put on Oxycontin and pregabalin. However, they just didn't cover my severe RLS.Pregabalin or gabapentin do work for many RLS patients. As does low dose Oxycontin.

But first you have to get off Ropinirole and do NOT let doctors put you on similar drugs like Pramipexole or the Neupro patch. They will quickly worsen your RLS again.

As pregabalin and Oxycontin didn't work for me, I pushed for low dose Buprenorphine after Shumbah had great success. It was instantly miraculous.

I take 0.4mg at night.

Many neurologists and local health authorities list Buprenorphine as a red list drug so refuse to prescribe unless a specialist supervises.

However, for many RLS patients, Buprenorphine or methadone are the only drugs that work.

So do your reading, look up Augmentation and dopamine agonists and read the posts on here for the last few weeks.

Getting off Ropinirole will really improve your RLS.

Raising your brain iron by increasing serum ferritin is the first step. It can resolve the majority of RLS once off Ropinirole. So get full panel iron blood tests.

[Baldrick123 in reply to Joolsg]

Thanks. I was also put on Omeprazole after a camera down throat procedure found duodenitis but a later such procedure said it had completely gone so doctor should have got me off Omeprazole. I am convinced this is interfering with iron absorption. People who say the NHS is the envy of the world are misguided. It's great for life-threatening things like heart attacks but for common quality of life ailments it's a waste of tax players money.

[Joolsg in reply to Baldrick123]

Omeprazole definitely stops iron absorption and triggers RLS. All on the RLS UK website.

[SueJohnson]

Listen to Joolsg - she is spot on. To elaborate on a couple things she said: Have you had your ferritin checked? 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 as she said. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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.

As she mentioned, 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.

Gabapentin or pregabalin are now the first line treatment for RLS and work for many people. The beginning dose is usually 300 mg gabapentin (75 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. 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 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. If you take magnesium 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) daily."

If gabapentin/pregabalin do not work or the side effects are too much, then opioids are the next step. You can always skip his step and go straight to opioids but it can often be hard to get a doctor to prescribe them.

[SueJohnson]

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, estrogen, 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, 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, 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, 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.