Need help badly.

[SevereRLS-4mom]

Mom has severe rls and she is sleeping barely 3 hours day. She has had it for years but now last 2 yrs it's gone nuts. It acts up especially at night. There has to be a solution. She taking aranesp 4 times a week. Her blood levels won't go up. She eats healthy but nothing helps.

[Madlegs1]

What medications is she on-- all of them.?

Do read up any of Sue Johnson's replies to many posts here, asking similar questions.

Good luck.

[SueJohnson]

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

I can't help with her blood levels but I can give you some advice for her RLS.however is her low red blood cells caused by kidney problems? If so I would modify what I say below so it is important that you let me know.

Has she had her ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When she sees her doctor, she should ask for a full iron panel. She should stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and her transferrin saturation to be between 20 and 45. If her ferritin is less than 100 or her transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Above all she shouldn't let her doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels she needs it.. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead she should ask him/her 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 to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn'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 pregabalin)." If she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and she shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin). Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her doctor to 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(salt), 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in

[Joolsg]

Can you list ALL her meds? Also, where are you? If in the USA, we can guide you to a knowledgeable doctor.