What Severe RLS is Like

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

Postby Polar Bear » Fri Aug 11, 2017 12:52 pm

I am so happy for you.
I'd agree with Deb and not move down too quickly.
Well done.
Betty
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EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Aug 11, 2017 7:00 pm

Polar Bear wrote:I am so happy for you.
I'd agree with Deb and not move down too quickly.
Well done.


I worked in yard today pulling weeds, mowing, and using the weed eater for over 3 hours and it is around 80f outside. I swear I feel half my age, Suboxone must really do a number on me at 4 mg dose, I didn't entirely realize it until today. I hit my 10,000 steps before 11am today which is crazy good. My wife will be jealous when she returns later as she is out shopping with a friend. :mrgreen:

I keep wondering what has happened to cause this, at one point I was on mirapex, ambien, methadone, gabapentin, and Lycia all at the same time and it got to the point that they would not work! This is absolutely amazing. Somehow I think whatever was not working is again. Or maybe it has been long enough so that mirapex or one of the other drugs have stopped messing with me. That mirapex can mess with a person for years afterwords, it must mess up the brain somehow but maybe it repairs itself. Of course I am speculating and have no real idea. Don't look a gift horse in the mouth they say and this certainly seems like a gift to me :D

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Fri Aug 11, 2017 9:20 pm

This is such a gift, since you have retired.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Sat Aug 12, 2017 1:58 am

So wonderful to hear.
Ann - Take what you need, leave the rest

Managing Your RLS

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Yankiwi
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Re: What Severe RLS is Like

Postby Yankiwi » Sat Aug 12, 2017 4:30 am

That's absolutely fabulous, almost a miracle, best wishes. Your drugs must have really been fighting each other.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Aug 12, 2017 7:09 am

Are you having any symptoms at all ? If so, I can't even imagine it.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sun Aug 13, 2017 12:32 pm

debbluebird wrote:Are you having any symptoms at all ? If so, I can't even imagine it.


The main symptom is headache which was not fixed by Aleve but was by taking a low dose of Kratom and I have only taken it twice so far and that is symptom of withdrawals. I probably am more fidgety during the day, suppose it could be RLS but I was like that since I was a kid. Last night I slept 4 hours got up to go to bathroom and then slept another 4 hours. Woke up and immediately was awake for day. Can't ask for better sleep than that.

Two days ago I was talking to a jerk on the phone and suddenly called him a SOB and hung up on him. I don't normally do that! Usually I would have been polite and put up with the guys rudeness but it was all over before I realized what I had done. One might say I am irritable lately :twisted:

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sun Aug 13, 2017 8:06 pm

Well, I'm glad your legs are so much better. I can only dream of that.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Aug 15, 2017 11:31 am

debbluebird wrote:Well, I'm glad your legs are so much better. I can only dream of that.


If I can get better anyone can. I had just about lost all hope but now taking only 1/4 of my suboxone doesn't even bother me much. I did get up at 4 am but then I went to sleep at 8 pm. I may only wait a week now and half the dose again lol, not positive yet but never expected it to be this easy to get off suboxone.

Now having bunion problem both big toes. Feels like a bad sunburn on and off, mostly left toe. Podietrist has been trying to fix them up but not working. He mentioned surgery last visit but it is abhorrent to me to even think about another surgery for any purpose. I slept last night with gel spacers between my big toes and it worked but 10 minutes after taking them off this morning had to put them back on on left foot cause pain came back. Doc said normally it wouldn't be that bad as mine aren't severe but also have arthritis in big toes making it worse.

As they say if it is not one thing then another :roll: Of course I will blame this on severe RLS too as I have had to walk many thousands of miles more than normal over the last 18 years. Unlike a car I can't change the old tires.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Thu Aug 17, 2017 4:47 am

Made a Mistake today that I am now paying for. Forgot my 9 am suboxone so at noon I just took the noon dose. Then took the 3:30 pm dose. I went to bed at 8 pm and was really tired 15 minutes latter. Figured I would sleep well as kept dosing off reading in bed. As soon as I decided to go to sleep I realized I had completely woken up. Read for another hour and I was full awake and hungry. Went to kitchen and had an Atkins bar and wanted another one. Rarely eat them and rarely hungry on diet. Took my missed dose instead of eating again and really sort of wired now. I still might have another bar.

So for some reason the missed dose was not a good thing. Not sure why, maybe suboxone puts me to sleep more than I thought it did. My feet are killing me walked over 18,000 steps today, I suppose that is a subtle RLS. My goal is 10,000 steps a day but not this much it was just a lot of pacing today. Strange that I could take 1/4 of original meds and it doesn't bother me much but forget one dose and everything goes wonky. :roll:

badnights
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Re: What Severe RLS is Like

Postby badnights » Fri Aug 18, 2017 4:39 am

Maybe the increased symptoms and missed dose were coincidence?
Beth - Wishing you all restful sleep tonight
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debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Fri Aug 18, 2017 5:46 am

It has happened to me.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Aug 18, 2017 9:53 am

Wow. My Fitbit reading is 2:43 minutes in bed and 25 minutes of that was awake. It says I actually woke up at midnight and I just tried to pretend like I was sleeping until 1:30 am and realized I had full blown RLS. So far though I am able to sit in my chair but my legs are going like a car idling. Yesterday ended up 5:58 minutes total sleep. So something is going on I have not changed anything I can think of.

I am rather depressed at the moment. I am not used to little sleep, probably why I suppose. All I can do is hope. I will keep the dose the same today but if this happens again tonight I will up the dose to half instead of 1/4 and see what happens. I think tomorrow will be a week on 1/4 dose. It says I awoke abruptly from R.E.M. Sleep and that was that, the old feeling of total restlessness. :(

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Aug 19, 2017 5:47 am

I'd say you have started into what I call, a bad period. They always pass for me, after a few days or so. They used to last longer when my food wasn't so great.
So, as they say, this too shall pass. I always add other meds when this happens. This would be a good time for the kramtom, with some Miralax added for the bowels.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sat Aug 19, 2017 6:43 am

debbluebird wrote:I'd say you have started into what I call, a bad period. They always pass for me, after a few days or so. They used to last longer when my food wasn't so great.
So, as they say, this too shall pass. I always add other meds when this happens. This would be a good time for the kramtom, with some Miralax added for the bowels.


Happened again tonight went to bed at 10:15 pm cause we stayed up to watch a show despite my being exhausted and within 45 minutes of attempting to sleep it was full blown RLS. I couldn't stop shaking my head and feet at same time. Took 6 grams of kratom and an extra 1/4 mg of suboxone and nothing changed except I am now standing in kitchen typing this on iPad as I can't sit down. I really thought I was going to be over this and looks like I was totally wrong.

Tomorrow I will go back to 2 mg of suboxone rather than 1 mg and pray that it works. I would hate to have to take 4 mg again but now I can't even rule that out. Seems fate is playing with me. The way things are going I just hope that any amount of suboxone works at this point. I just turned 62 years old and I am officially a senior citizen, I'm getting too old for this.


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