massage machines

[LHtired]

any advice on massage machines and how effective they are? I have sever RLS and find it very difficult to sit in the evening for longer than 5 mins

[SueJohnson]

Some find them effective. Some don't. Certainly worth a try.

[SueJohnson]

Are you taking any medicines for your RLS?

[SueJohnson]

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

[SueJohnson]

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, 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, 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.

[LHtired in reply to SueJohnson]

many thanks for the advice

[LHtired in reply to SueJohnson]

thanks for the advice. I have tried just about everything , most work for a while then I'm back to square 1. luckily I have a fantastic GP who is helpful when choosing something else to try. Iron levels are fine . The exercise ball works while I'm bouncing unfortunately it is very difficult to sleep while bouncing!! I have tried cbd oil, doesn't help with the balance! I will continue to explore everything in the hopes that I stumble on something that works, possibly stopping at amputation. Knowing my luck I would get phantom rls

[SueJohnson in reply to LHtired]

You say your iron levels are fine but do you know your ferritin? Doctors will say they are fine, but what is fine for others is not fine for those of us with RLS. If you don't know your ferritin, ask your doctor. Also if you didn't fast after midnight and have your test in the morning, the results might have shown it over 100 when that wasn't the true value.

Have you tried gabapentin or pregabalin?

Have you tried a low dose opioid?

[LHtired in reply to SueJohnson]

I have tried both gabapentin and pregablin, I'm taking codeine 60mg at night which usually gives me 45mins or an hour then I have to get up and walk around for a while. I can then get another hour and repeat the process. altogether i get 3 to 4 hours of broken sleep. but thanks for your advice. I will speak to my GP about the ferritin levels again when I next see her.

[SueJohnson in reply to LHtired]

What was your experience with gabapentin and pregabalin? Did you have side effects you couldn't live with and if so how long were you on it? Did they not work for you and if so how much did you take?

[SueJohnson in reply to LHtired]

Codeine is a weak opioid and as you have found out it doesn't last very long usually 4 hours. . Adding tylenol at same time makes it a little bit stronger. 60 mg is still a low dose. According to the Mayo Clinic Updated Algorithm on RLS the usual effective dose is 60 to 180 mg. If you haven't seen it, check it out at Https://mayoclinicproceedings.org/a... It is now considered the bible for the treatment of RLS. If an increased codeine dose doesn't work, I would suggest buprenorphine which is stronger and lasts 24 hours. Many on this forum take it.

[LHtired in reply to SueJohnson]

Thanks, I will have a go with 90 to 120mg codeine first and then take a copy of the updated algorithm to my GP. I will let you know of the results.

[zscooterz]

Just two nights ago this came to my mind and I have found relief by using a massage gun when I'm experiencing RLS, just by setting the massager between my legs. The problem is that it shuts down every five minutes. My thoughts are to try to find a better fitting solution.

[SueJohnson in reply to zscooterz]

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

Are you taking any medicines for your RLS?

[zscooterz in reply to SueJohnson]

I am taking Pregabalin and Clonazepam.

[SueJohnson in reply to zscooterz]

How much pregabalin are you taking?

[zscooterz in reply to SueJohnson]

50 mg twice a day.

[SueJohnson in reply to zscooterz]

Why twice a day? Do you have symptoms during the day?

[zscooterz in reply to SueJohnson]

Yes, I do have daytime symptoms.

[SueJohnson in reply to zscooterz]

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, 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, 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.

[Nightwalker999 in reply to zscooterz]

Hi there, when your massager stops restart straight away. Shouldn’t be a problem then.

Does it help to calm legs after a while?

[zscooterz in reply to Nightwalker999]

Yes, I am able to sleep.

[brusch52]

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[restlessinlondon]

Some amazing advice you've been given. My only addition, which helps me, is to sit on a large exercise ball and bounce up and down. When I'm too tired to stand I sit and bounce and watch TV for the distraction. Hope you can find the best thing for you.

[Ticki]

I’ve owned every darn machine you can buy on the market practically and yeah it works while I’m using it but not when I stop that’s my story 😞

[Trooper2017]

My brother uses one and finds it very helpful. I have had severe RLS for years until now. The doctor is gradually taking me off Requip and has me on 5 milligram of Methadone. I also take 1200 milligram of Horizant. I have been RLS free of symptoms for three months now after suffering with sleepless nights for almost forty years.

[bedith6]

Hello. I have severe RLS and l use a hand held percussive massager. It really helps to keep the jitters away, temporarily of course. but l couldn’t do without it.

[Somebody77]

Hey. I have tried a massage gun (just from Amazon) but sent it back as actually made my legs worse. BUT we are all different and what doesn’t work for one will work for another. Defo give it a try. I also tried the TheraPulse and had very high hopes for it. The reviews show it works for lots of people but alas not me! Sent that back for a refund too.

SueJohnson has amazing advice on here. I am doing most of what she has suggested. My iron is super low tho so going down that route.

Good luck 🤞

[barbarylane]

I have been using a massage gun with no meds for well over a year now. I started to use the gun all over my legs but now I've realised that i only need to use it around the muscles of the tops of my knees. I use it for about 3-4minutes in total every night just before going to bed and it really helps. If my restless legs start again during the night, I use the massage gun on my leg and it calms down straight away and I manage to get back to sleep. It's the best thing I've tried and still works to control the dreaded jumpy legs. I used to be on Pramepexole for about 12 years but gradually came off it as I started augementation. Hope you find some relief. I have taken my massage gun on several flights as my legs tend to flare up when I'm sat down for too long and especially on late night flights. It really helps me.