Restless leg syndrome: Rls started when... - Restless Legs Syn...

Restless Legs Syndrome

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Restless leg syndrome

Texas71 profile image
9 Replies

Rls started when I was 7 months pregnant with my first child and has been rearing it’s head since 1973, 50 years. The past few months I have been taking 3gr of red vein kratom and it was helping. Lately it doesn’t seem to control it at bedtime. I spend a couple of hours exercising, stretching and massaging my legs before I can sleep. How well does Ropinirole work for RLS? Is it an OTC drug I can pick up from my drug store?

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Texas71 profile image
Texas71
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SueJohnson profile image
SueJohnson

No No No. You do not want ropinirole which is a prescription drug. 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. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a... Dopamine agonists like ropinirole and pramipexole (Mirapex) are no longer the first line treatment for RLS. Gabapentin or pregabalin is (also prescription drugs). (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It takes 3 weeks to be fully effective fully effective. 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 it and if you take calcium don't take it within 2 hours. 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 you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. 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.

SueJohnson profile image
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.

Madlegs1 profile image
Madlegs1

I would strongly advise not to start on Ropinerol or any of the Dopamine agonists - Pramipexol/ Sifrol or -- can't think of the name ???

Gabapentin or Horizant (if you Medicaid will allow) or Pregabalin are the first line meds ,.

Since yours was started by your greedy baby grabbing all your precious iron, this may well be a pointer to iron deficiency being a cause.

You need to get a full fasting iron panel blood test. Get the actual figure for ferritin and saturation.

Get back to us,then.

I'm sure Sue will come on about taking gentle iron meanwhile.

All the best.

Oh-- start keeping a diary of all that's going into your mouth. This may point to any triggers.

Good luck.

Texas71 profile image
Texas71 in reply toMadlegs1

Thank you so much for the information, it makes sense that low iron could be the problem as I am a vegetarian and don’t eat red meat. I will get with my doctor too as I have an appointment coming up I will ask her to check the ferritin and saturation levels. I hate taking iron as it gives me constipation but maybe she has a remedy for that too. I appreciate all the information you, Sue Johnson and Joolsg gave me, thanks!

Munroist profile image
Munroist in reply toTexas71

Iron bisglycinate is meant to be a lot kinder on your stomach and I don’t recall anybody on this forum saying it caused constipation. I take it and I don’t have any problems. Hopefully a plant-based diet will have a high fibre content as well.

SueJohnson profile image
SueJohnson

P.S, I know I posted all this information to you before, but since it has been 6 months and you mentioned ropinirole I thought it a good idea to give it to you again so forgive me for repeating myself.

Texas71 profile image
Texas71 in reply toSueJohnson

Sue, thank you so much for all the information, you gave me a lot and I will take it to my Dr and have her help me digest it all. I am still trying to figure out how to navigate Search Health Unlocked. Your information makes great sense and I am not doing anything different until I see my doctor. The supplement I am taking as well as magnesium, calcium, D3, potassium, zinc is Quercetin. I don’t smoke or drink, caffeine is a biggie for me, I have no problem cutting some of that out, drink caffeine free drinks and see if that helps. I appreciate all the information you have given me, not to mention your time to tell me all of this. I am so thankful!

SueJohnson profile image
SueJohnson in reply toTexas71

Quercetin is fine. After you enter your search term, click on the icon next to it. You can then filter the results to be only in your communities. If there are a lot of results scroll up to the top to see where you can filter them.

Joolsg profile image
Joolsg

I agree with SueJohnson & Madlegs on Ropinirole.

Kratom is known for losing effectiveness. Some people recommend rotating different strains to prevent tolerance developing.

As you respond well to kratom, you will likely respond well to low dose opioids as kratom works on the opioid receptors.

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