What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
Polar Bear
Moderator
Posts: 6699
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

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
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
Posts: 1378
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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
Posts: 1588
Joined: Mon May 21, 2012 3:27 pm

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
Moderator
Posts: 14642
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

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

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
Posts: 255
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

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
Posts: 1588
Joined: Mon May 21, 2012 3:27 pm

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
Posts: 1378
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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
Posts: 1588
Joined: Mon May 21, 2012 3:27 pm

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
Posts: 1378
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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
Posts: 1378
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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
Moderator
Posts: 4367
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

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
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

debbluebird
Posts: 1588
Joined: Mon May 21, 2012 3:27 pm

Re: What Severe RLS is Like

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

It has happened to me.


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 2 guests