What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
badnights
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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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debbluebird
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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.

Polar Bear
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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:
Betty
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Yankiwi
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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.

debbluebird
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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.

legsbestill
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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.

TiredGrammy
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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.

EeFall
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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.

2BassetMom
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Re: What Severe RLS is Like

Postby 2BassetMom » Thu Mar 22, 2018 9:12 am

Eefall, Faith and Hope. that's what keeps me sane. Also a great dose of humor. RlS is a challenge we deal with daily, hourly sometimes. If I can get outdoors that seems to help with my mental state. Right now I am up at 3:00 am with restless legs and anxiety. I can zero in on the anxiety cause but that doesn't make it go away. My husband and I are visiting W Yellowstone which is a beautiful town just outside the national park. The weather predicted is for snow when we travel back up to N Idaho. We will be rushing back to attend memorial services for my best friend for 40 years who died while we were here. She was my age, 70, and of course that brings my mortality to mind. So you see the anxiety was waiting to pounce. Betty, I just read the previous postings on this thread and I must say you helped tremendously with your description of sleeping late and having people show up. That happens to me too. I guess what I am trying to say is that this group is always ready to lend an ear and share advice. Don't give up hope Eefall, find someone to talk to; maybe while talking a walk. Live one day at a time, don't project into the future. Hoping for better days for you.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Thu Mar 22, 2018 11:52 am

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.


Eefall - you say you just have to live with it.
Do you mean physically, or mentally, in particular, or the entire package.

Please see your GP about your sadness.
I have often felt that a person who suffers from severe RLS as most of us do, has something wrong with them if they don't succumb (mentally) to some extent to the disease and its ongoing effects. How can such chronic torture not have a negative effect on a sufferer.
Like yourself I have many ongoing issues - I take a low dose of anti depressant, started off with a treatment dose and when I was feeling better stayed on the minimum dose.

Faith and hope. :wave:
Betty
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stjohnh
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Re: What Severe RLS is Like

Postby stjohnh » Thu Mar 22, 2018 2:31 pm

I take a low dose of Cymbalta daily, it doesn't interfere or exacerbate RLS. Works well, no side effects at the doses I take.
Blessings,
Holland

2BassetMom
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Re: What Severe RLS is Like

Postby 2BassetMom » Thu Mar 22, 2018 2:56 pm

Holland and Betty, good advice. I see my primary care doctor in April and will have a talk with her about my anxiety/depression. I like what you said Betty about our long term torture and the effect it would have on us. Thanks, Eefall I hope this has helped.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Thu Mar 22, 2018 4:09 pm

Just to say that the antidepressant I take is Citalopram. Started at 10mg, up to 20mg, then down to 10 again.

I'm actually thinking of halving the pill to take it down to 5mg, but don't want to say this to my GP in case he adjusts the prescription accordingly and I then perhaps find myself trying to convince him to increase it.

Good luck 2BM with your GP. I spent many years saying No to my GP with regard to an antidepressant (dealing with several painful conditions but didn't reckon I needed an AD, GP disagreed) for fear it would negatively impact on my RLS but it doesn't appear to have done so.
And GP was correct, I didn't realise how much of a 'face' I was putting on until I didn't have to pretend any more.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Thu Mar 22, 2018 7:54 pm

Hey thanks everyone. I am going to a new general practitioner doctor in about a month. Our insurance has changed and so all are doctors are changing. Although I am going to my old sleep doctor, found out yesterday it will be $250 to see him once a year to continue getting Suboxone, not bad. Actually though I know in my message it sounds like I am depressed but I was (am) so far gone I didn't recognize it until you folks mentioned it.

Anyway I think I will mention I am depressed to the doc. Years ago I took Remeron (Mirtazapine) and at about the 6 week mark (how long it took to kick in) it was like going from a rainy day to a beautiful day. Sort of fake really, but it kept me going. I think the major problem is that even though I have been averaging 7 hours a night sleep for many months now, it just is not refreshing. I thing my RLS is so bad that my brain is working overtime even while sleeping. It is pretty obvious during the day as I am yawning a lot. Too bad I can't rest during day.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Thu Mar 22, 2018 10:57 pm

It's good to read that you plan to discuss it with your new GP. Please do.

Years ago I took Remeron (Mirtazapine) and at about the 6 week mark (how long it took to kick in) it was like going from a rainy day to a beautiful day.


It was about the 3 week mark for me. We'd had a holiday planned and I couldn't have cared less whether or not it came to pass. I was only going through the motions regarding most things After about the 3 weeks on Citalopram I found myself looking forward, finding enthusiasm.

Is it not possible that you see your GP sooner than one month, after all, by 4 weeks you could be well on the way to better times.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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