the restless legs enigma

[bajo]

Hi, like all of you, I have been a victim of restless legs. I slept on the sofa for three years, sleeping for 20 minutes and then walking around for 20 minutes repeatedly until about 4 am and then crashing out. I suffered this to avoid disturbing my wife until my doctor gave me Ropinirole. As we all know, the problem with these `fixes` is that they cease to work properly after a while, but, in my case, they still guaranteed me at least 6 hours of sleep, and that was better than sleeping on the sofa with four hours of sleep. Strangely, in my later years, I have understood RLS a little better, and although I still get up early in the morning to go to work, I have changed the time that I go to bed. I now understand that RLS is associated with tiredness. The tiredness in my body, as well as my legs, and now I retire from 11am to 11.15am, and strangely, after all these years, I now sleep through to about 7 00am . The problem is, if I take a chance and retire at about 12.00am for a couple of nights, my body gets tired generally, and this seems to reduce the efficiency of the medication and,I end up walking around at about 4 00am. This then takes a couple of nights of retiring to bed at 11 ish to re-regulate my pattern. Could this be a thing passed on from when our ancestors lived in caves and is still a part of our genes? If you need any help, all that I can add is that I understand that you are having trouble `out there` and are probably exhausted at times, but please try and go to bed at an early regular hour (I know it is boring, but what is our choice?) . As for aching or painful legs, my wife suggested rubbing a Vic-type vapor rub onto my legs, especially the backs, and after some skepticism on my part, I decided to try it and was surprised to find it helps quite a lot. If it works for you, can you post your response for others, please?

Many thanks, Bajoguy

[SueJohnson]

How much ropinirole are you on? I suspect since it is not controlling your RLS that you are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worse. Do any one of this apply to you? If so reply back here and we can give you some advice, You don't need to suffer.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done.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 in a multivitamin 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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 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.

[bajo in reply to SueJohnson]

Hello, Sue. I have not increased my ropinirole dose for 20 years and, although it isn`t as effective as when first given, with proper sleep, it works for me. I didn`t mention that I was suffering, I said that I am having 7/8 hours sleep each night if I respect my inbuilt time clock and feel that there may be some justification in looking at this `avenue` along with all your other invaluable suggestions.

[SueJohnson in reply to bajo]

OK - I misunderstood when you said "they cease to work properly." I'm glad it is working for you - just be aware of the signs for the future.

[Bantamdyno]

Hi ,have you found where the sensation comes from by bending your knee up to your chest🤔,have you tried a tubular bandages at night🤔

[Joolsg]

I tried rubbing tiger balm all over my legs when I was augmenting on Ropinirole. It helped distract me as the burning sensation from the balm kicked in. It didn't last though. Strangely, I always managed to sleep on Ropinirole. It was the daytime symptoms that were the problem.You're incredibly lucky to have zero RLS at any time of day or night after 20 years on Ropinirole. I presume you're on.an incredibly low dose, under 1mg.

[Eryl]

RLS is usually caused by inflammation of the nerves causing them to send out spurious signals. The conventional 'fix' is to try to block the signals but a better way is to eliminate the inflammation, Inflammation is most often caused by foods especially refined crbohydrate which raises blood sugar. I have eliminated my RLS without meds by avoiding all processed food even minimally processed ones like bread and fruit juices. I also restrict fruit to hlf a cupfull of berries per day as many modern varieties found in shops have been bred to be over sweet.

[Yolyly]

El medico me recetó 100 mlg de tramadol por un lesión neuropatíca producto de una fracturas en mi columna y descubrí que también me alivió el spi y puedo dormir mucho mejor

[Kaarina Administrator in reply to Yolyly]

Your message has been translated using DeepL translate.

The doctor prescribed me 100 mlg of tramadol for a neuropathic injury resulting from a fracture in my spine and I found that it also relieved my spi and I can sleep much better.

[Lineker]

Hi Bajo - thanks for your interesting reply. After reading it, I tried some Ibuprofen gel. Have to admit that for 20 minutes I was pain free. It was good while it lasted!

I think your advice to have a regular bedtime made sense. It’s something I try to do and I think it works. Thanks again.

[bajo in reply to Lineker]

HI, Lineker. Good luck .