Instant help

[Happyfriday123]

I would like to inform you about a funny instant release that I came across recently. When I am in bed trying to sleep and my legs are jumping because my dopamine agonist doesn’t work, then I stand on my cold balcony only in my underwear for about 5 minutes (at the moment it is maybe about 0 and 8 degree Celsius or 32 to 46 degree Fahrenheit). When I go back to bed my legs are calm I can fall asleep easily. I couldn’t really believe it the first time but it helped also the other times when I tried it. It seems to calm the nerves. I hope this can help others as well, that’s why I am writing this here.

[Madlegs1]

The mind boggles!💚

[LotteM]

Interesting!

[Whippetmama]

Hilarious! You do what you gotta do

[TheDoDahMan]

That is so cool!

[Bluebboat]

Actually it makes sense from what we know. That is our dopamine receptors get sharpened up by cold, hunger, and pain. I’m not sure how or why but have just read a book called ‘Dopamine Nation’ which has helped me understand why people go cold water swimming in winter.

[Happyfriday123 in reply to Bluebboat]

That is interesting, thank you 🙏🏼

[Goldy700]

I have found something similar - I have discovered that walking on cold wet grass extremely soothing to my legs - I only hope the neighbours do not ever discover this strange lady walking around the garden at 2 am but that can happen. Hot baths also work quite well for a time. I use these when I take a cannabis holiday every so often.

[Happyfriday123 in reply to Goldy700]

Haha, yesterday I even installed a cold bath tub on my (stable!) balcony. Also hope my neighbors do not see me in there

[Moonwalker1967]

Ice cold showers have the same effect on my legs.

[2islandboy in reply to Moonwalker1967]

Cold on my offending leg kills the RLS. Walking outside or sitting on the side of the tub and using a flex shower head with stone-cold water usually works

[Embroiderer]

Yes I find cold floors and cold water poured on my legs often help. I don’t towel dry my legs afterwards.

[Munroist]

When camping I find the long cold walk to the toilet block (fully dressed) sorts out my RLS enough to get back to sleep.

[Katielove53]

I agree with cold. I often find myself stood in the kitchen with the fridge door open! If that fails I walk up and down my garden path a few times. I am menopausal so am constantly hot. Its mad what to try to ease our discomfort but again this forum has helped keep me same in the wee hours.

[Happyfriday123 in reply to Katielove53]

Yes it is crazy what we are all trying. In the forum I see I am not alone

[Zurp111]

Legs's cold shower do the trick too.

[Happyfriday123 in reply to Zurp111]

That never helped enough for me..but I‘ve heard that it helped others

[Virginic]

I fen notice that my husband’s RLS is relieved (in the evening) whenever he watches films or TV thrillers with a lot of tension in them.

[Goldy700 in reply to Virginic]

Yes somehow distraction seems to help - why is it I have perfectly normal dreams with no RLS until I wake up I often wonder...

[Arymretep]

I have a tiled stone kitchen floor and it’s heaven in the middle of the night when my feet/ legs are playing up! I’m standing there drinking my tea in bare feet, great👍

[IrisRN]

Living in Miami has many drawbacks…..I do find that getting in the pool or bath quiets the beast within

[HappyGreenBean]

Interesting and fun for your neighbours! lol! I see this slightly differently to others saying it might be related to dopamine but I'm not discounting it. I rather think it might be more complicated in that when you're cold, your body diverts blood flow to crucial organs, specifically the lungs, heart, brain. In addition, stressors such as cold do trigger a small dopamagenic response. My thinking is that it's both of these that help. The more blood flowing in/around the brain the higher concentrations of iron etc.

Also, if you have acid reflux, you're told to put your bed on an angle. I did this and it triggers my RLS badly. Gravity keeping the blood in my lower limbs is my thinking. I've had to abandon the angled bed and simply accept the acid reflux in exchange for reduced RLS symptoms.

I'm likely wrong about all of this but this is just my two cents worth and it may be similar to others here.

Couldn't be happier for you though! Anything that works!

[Happyfriday123 in reply to HappyGreenBean]

Interesting theory. I think we all can just guess and have our own theory about the phenomenons. I really hope that science will know a bit more soon. Like you’re saying: anything that works. I am still hoping for healing so that I don’t need medications, even though science says that primary RLS is not curable. Maybe we have to believe in miracles sometimes.

[Carlettejaque]

I suffer from Erythromelalgia of hit feet syndrome. My feet burn horribly unless I can keep them cold. If I don't the feeling spreads up my legs. It's a really horrible feeling which results in RLS. It's a small fibre neuropathy. It also causes the skin sloughing off the soles on the feet. It feels like walking on dozens of paper cuts. Providing I keep cool and keep my feet icy cold it's okay. I use a pet cooling mat, ice gel slippers and cold water soaks. I keep a bowl of water in my bathroom and kitchen so I can have a cold water paddle whenever I want. I soak my feet in ice water for 30 minutes before bed. I sleep with my feet and lower legs exposed and with an ice pack next to my feet in case I need to put my feet on them at night. On a warm night I have to use a fan on my feet too. All of this is a terrible faff but the cold helps a lot. So i can understand how standing on your balcony and getting cold would help. Sleeping is a challenge. This condition started despite all ready being on a high dose of Gabapentin for neuropathic skin pain.Try the ice water treatment before bed and see if it helps.

[Happyfriday123 in reply to Carlettejaque]

I feel really sorry for your suffering. But glad that you found at least some relief by the cold. Did you find all of this out by yourself? Have you ever heard about the Wim Hof method?

[Carlettejaque]

No, I just looked it up. I have practiced breathing in the past but it doesn't really help with neuropathic pain caused by degeneration of the nerve sheaths. I have other health issues, severe IBS and Arthritis, a non existent thyroid gland and cardiovascular disease plus brain vascular damage due to a TIA 6 years ago. Most pains I can cope with (,I can't tolerate pain killers) by trying to analyse the pain but burning feet and severe all over the body skin pain, I can't. I have to have Ganapentin and steroids.I have been researching my symptoms and I tick all the boxes for Sjorgrens Syndrome. I'm going for a special blood test on Wednesday. But usually you have a lip biopsy to determine nerve fibre damage or disruption. RLS is also linked to Sjorgrens.

[Happyfriday123 in reply to Carlettejaque]

I am so sorry. I can imagine how desperate you are (I would be..!). I mentioned Wim Hof rather because of the ice bathing (cold therapy) than because of the breathing. I wish you find clarity for your situation and also relief soon!

[Hidden]

I find it works both ways: get too warm, RLS starts or is exacerbated; cooling my legs helps, sometimes briefly sometimes for the night