Restless legs and being warm

[Bigrob1]

Just had a 10 day holiday where I did walking and a fair bit of drinking and my legs didn't play up that much .now I am back there playing up again.am I right to think it's from the sun and walking that stopped them hurting?

[Madlegs1]

The holiday drinking should have sent you crazy!!!???

Maybe there are other triggers in your diet / life back home.?🤔

[Bigrob1 in reply to Madlegs1]

Life back homes just normal I didn't start back work to today so had w days just doing not much but body hurts even more so last night and this morning

[amrob123]

It may be the exercise. Or the lack of stress from being on holiday.

If being hot stopped RLS, then many of us here in Australia shouldn't have RLS.

In fact, many people complain that the heat exacerbates their RLS.

Perhaps there's an optimal temperature range for RLS! I nominate 22 - 27 degrees celsius 😊

[Eryl]

Probably more to do with what you've been eating.

[Munroist]

You generally have a different, more positive mindset on holiday with lots of new distractions which probably helps. I find holidays help a lot with my back issues, partly because I’m moving more but mostly because I’m doing too much to notice. Not everyone finds alcohol a trigger, I certainly don’t, and while it doesn’t help your sleep quality it may stop you waking or noticing your RLS. Eryl is right that the change in food may also be a factor.

[Joolsg]

Dopamine.Being on holiday and eating, drinking & having a great time releases dopamine.

Dopamine reduces RLS.

[Optidad]

Last holiday I had was in Gozo , 35 in day, 25 at night. Was on pramipexole 0.36 at night ( off it now thank God, still looking an alternative as due to ICD not allowed anything narcotic ) . Wasn't sleeping too well on the run up to the holiday . Had a dreadful 2 weeks with RLS and upper limb involvement . Thought it was the heat . After reading this forum I now know why.... my all knowing, highly educated GP gave me an Rx of Mirtazapine to help me sleep ....FFFS.

PS . Just google Mirtazapine induced nightmares ( is it any wonder i thought i was losing my mind )

[SueJohnson in reply to Optidad]

If your ICD was only while you were on the DA then there is no reason why you can't take an opioid. A number of people on this forum had ICDs while on a DA and are now taking opioids.

[Optidad in reply to SueJohnson]

Unfortunately my "behaviour" has lead to the breakdown of my 35 year couple / 25 year marriage and my wife is insisting i attend rehabilitation before I get to see my 15 year old daughter ( my 18 and 20 year old are quite independently happy to see me ) . Rehab have advised if I test positive for any opiate , they will not admit me. They also ban any gaba drug . I agree with u . I had no substance abuse history prior to this. I will admit weekend social drinking in our early relationship could result in an occasional belligerent me , so I stopped alcohol 18 years ago at her request . No help needed , only a firm request . So until.i complete the program I'm in a catch 22 . I'm holding fire on showing her the research on DAs as I don't think she will listen ( massive faith in doctors ) . Words are not enough , actions and results are my only hope .

[SueJohnson in reply to Optidad]

I am sorry to hear this. How long will the rehab last?

If she has faith in doctors show her the Mayo Clinic Updated Algorithm on RLS which was written by the top doctors in the US and is considered the bible on RLS

This article shows that dopamine agonists can cause ICDs and that they go away after stopping the DA. medicalnewstoday.com/articl...

Also this one written by a doctor at Johns Hopkins one of the top hospitals in the US although it mainly talk about Parkinson's that is because Parkinson's patients receive DAs as treatment. apdaparkinson.org/what-is-p...

You will need to print them out and highlight where it shows they go away after stopping the DA.

May do no good if she is set in her thinking.

[Optidad in reply to SueJohnson]

I'm off the DAs 4 weeks now and I've never felt mentally better . Prior to August 22 , the last time I had used my Nasal cavity for anything other than breathing was at party in 2014 . My mirapexin was doubled in June 24 . Went to a "Games Night " with the lads ( all over 45!) August 22 , habitual user from then . Cravings galore. Since I stopped mirapexin almost 4 weeks now , zero cravings , zero compulsive behaviour . Zero use. I'll toe the line , do my penance and then educate her . I'll regain full contact with my 15 year old , but am in 2 minds if I want to try and patch up the marriage . Trust is the cornerstone of any marriage . I didn't stray or anything like that at all. But if a relationship can fall after so many years of sharing everything , maybe it was time . At 53 , healthy, all my own hair😅. There's still time for both of us to find that trust somewhere .

[SueJohnson in reply to Optidad]

Understood.

[SueJohnson in reply to Optidad]

There are other medicines you can take to control your RLS.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 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 you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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 nor calcium-rich foods 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 to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.