Hello

[Squirrel_lover]

I would like to take this opportunity to say hello to everyone. I am new to the group. Thanks for giving me the opportunity to be in your group.😁

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here. But we need to know more before we can help you.

Obviously you have RLS or you wouldn't be here. What medicine are you taking for it, how much and does it control your RLS?

Have you had your ferritin checked? If so what was it?

[Squirrel_lover in reply to SueJohnson]

primadone 50mg tablets take one tablet in the morning and one tablet at bedtime .. I don’t know what ferritin is??

[SueJohnson in reply to Squirrel_lover]

Ferritin is a blood protein that contains iron and is very important for those of us with RLS. It is the first thing that should be checked when you have RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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. 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.

The primadone may help but is not a medicine that is used to treat RLS. When you see your doctor Above all don't let him or her prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is 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 to 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 split the doses with pregabalin) Most of the side effects of gabapentin and 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 pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://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 and with your heart condition I suspect you are taking some of them. If 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.

[Jumpey]

Welcome! I do hope your RLS is under control. If not, speak out and you will get lots of help.x

[Rezcat11]

Welcome, Squirrel_lover,

You will be glad to have discovered this forum!

The knowlege, advice, and support I've found from browsing forum threads and asking RLS related questions these last few years has been invaluable. No exaggeration; it may have saved my life.

And, while I deeply appreciate all thread posters and commenters (especially one who took the time to write me a personal message when I was in the throes of despair), I can't help but notice that your first welcome is from SueJohnson who is surely one of, if not the most, knowledgable, wisest, and helpful of us all. Rest assured that her information is credible and well sourced and be sure to seriously consider any and all of her recommendations.

Again, welcome - and good luck.

[Squirrel_lover in reply to Rezcat11]

Thank You Rezcat11♥️