What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
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Re: What Severe RLS is Like

Postby badnights » Sun Jan 07, 2018 6:04 pm

You have so much energy, Eefall. Life seems so much better now for you. But boredom sucks. If it's the kind of boredom where you don't want to sit still, what about joining a HIIT gym? It would consume an hour daily for a few days a week. Or some other sport. Even better if you and your wife do it together. Cross-country running. Orienteering (is that still a thing?). Or an activity not a sport but still something active - like geo-caching. Hahah. Listen to me. I have no idea what you might like! But maybe it's something to think about.
Beth - Wishing you all restful sleep tonight
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Re: What Severe RLS is Like

Postby debbluebird » Wed Jan 10, 2018 9:27 pm

I had a bad night. Up all night. I finally slept from 6 am to 9 am. So needless to say, I am tired today.

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Re: What Severe RLS is Like

Postby Polar Bear » Thu Jan 11, 2018 4:55 pm

Me too deb, I slept from 7am to 10.30. When I got up I decided 'before getting ready for the day' to empty the dishwasher etc.
Daughter in law arrived to visit with 8 month old youngest grandson..... there's me with the bed hair.....still in dressing gown.
Really must get dressed first when I lie that long :oops:
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Re: What Severe RLS is Like

Postby Yankiwi » Thu Jan 11, 2018 10:25 pm

EeFall—your online "diary" along with comments is such a valuable resource. I'm glad you're doing so well and thanks for keeping up the posts.

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Re: What Severe RLS is Like

Postby debbluebird » Sat Jan 13, 2018 6:41 am

Betty, we must be about the same when it comes to sleep.

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Re: What Severe RLS is Like

Postby legsbestill » Sun Jan 21, 2018 1:25 pm

Eefall, your experience on Dec 11th is almost certainly benign paroxysmal positional vertigo. It is a fairly common condition and is caused by tiny crystals moving around in the inner ear. It is characteristic that you would experience it turning onto one side rather than the other. I get it from time to time and it is very disorientating. The worst experience I had with it was one morning when I got as far as a sitting position on the side of the bed and - as far as I was concerned - the whole bed came up and hit me on the side of the face. In fact, I had fallen over but I was so distorted in terms of my balance that I didn't realise I was falling, I thought the bed was moving.
THere are tablets that can be taken but there is also a physical treatment which you can probably do yourself - I would imagine there are youtube videos - that is very effective. I know it was a while ago now and you have recovered but it is a condition that can recur and it is best to be prepared.

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Re: What Severe RLS is Like

Postby TiredGrammy » Thu Feb 01, 2018 10:59 pm

What a heartbreakingly accurate vivid description. You have a real gift for words. That gift really made a difference for me as I imagine it will for others, as it helps us to know we are not in this alone and we are fighting this battle with others who get it. Even if so many doctors don't. I hope a Coast Guard Cutter comes along for you soon and wraps you in warm blankets and clouds of restful sleep.

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Re: What Severe RLS is Like

Postby EeFall » Thu Mar 22, 2018 4:49 am

Several months have gone by since coming here. I have had a lot on my mind. Extremely sad. Some ways I am really healthy but other ways I feel defeated. Nothing will really get better and I just have to try to live with it. I try to hide out by reading and or listening to audio books. Movies too but running out of good books and movies. I listen to music but that to is getting boring.

I think the combination of suboxone, past experiences, and RLS has made me mentally ill (nicest way to say I'm insane I suppose). The only thing I can do is try to stay away from everyone. My poor wife, I am pretty sure she dislikes me, she is a saint to be sure to put up with me. I'm as strong as a bull and as mad as the hatter so I suppose I will live a very long time which must be some kind of punishment. My older brother thought reality was hell. I am starting to see his point. He lucked out and died at 50, hopefully he is somewhere better now.

Sort of feeling down lol as if this message is a bright one. There is always faith and hope. Ending on a good note.

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