What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: What Severe RLS is Like

Postby badnights » Tue Sep 20, 2016 7:44 am

It is dragging me down though and can just hope RLS will go away or a cure will be found. I am so tired of this.
I hear you. But it does improve in some people; the old stories that it was bound to get progressively worse forever aren't backed up by the data.
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: 1566
Joined: Mon May 21, 2012 3:27 pm

Re: What Severe RLS is Like

Postby debbluebird » Tue Sep 20, 2016 9:39 pm

I didn't know that it could get better.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: What Severe RLS is Like

Postby badnights » Wed Sep 21, 2016 9:35 am

Yes, it happens. Not rarely either. I first heard of it in the context of a European study - symptoms went up and down in severity with the years, sometimes going away completely; they even called the variability with time a hallmark of the disease. I was shocked. I've seen it come up in a couple of other studies, wish I could dig it up and share but zopiclone is kicking in :(
here's one
2011 Editorial _diagnosis, pop studies.pdf
(125.58 KiB) Downloaded 19 times
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

EeFall
Posts: 1354
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: What Severe RLS is Like

Postby EeFall » Tue Sep 27, 2016 2:44 am

How would one know if it were improving? I know it isn't in me as it is getting worse but if it suddenly cleared up I doubt I would know as I am always taking Suboxone lol

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: What Severe RLS is Like

Postby badnights » Tue Sep 27, 2016 9:32 am

I was going to say that I had wondered the same thing, but it occurs to me that I actually know the answer, because it happened to me. When I changed my diet. The main reason I could tell I was improving was because I was never medicated enough to cover off all the symptoms, so I noticed when they were covered better. Another reason was because I was in the habit of adjusting down or up depending on how bad my symptoms were, not just taking the same dose every day.

So what happened is, after about 3 months on the diet, I found myself taking for example 3 mg instead of 6 mg for my 11 PM dose more and more often, til finally I agreed for my prescription to be lowered by 3mg. (I had told my doctor about it. I was scared, but she promised I could go up again if I needed to.) Then over the next 6 months I reduced another 3 mg. And finally, over the last year, there have been many ups and downs but I just reduced another 3 mg.

Long answer that is veering off topic. Sorry. But if your symptoms are not fully covered, you should be able to tell if they're getting better, as long as you pay attention and dare to try a lower dose when you think you're getting better. Sometimes it backfires, and you lose a day because you've lost the night. It's a difficult risk to take.
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: 1566
Joined: Mon May 21, 2012 3:27 pm

Re: What Severe RLS is Like

Postby debbluebird » Wed Sep 28, 2016 10:26 pm

I agree with Beth. My symptoms aren't covered 100 %. I notice when they are. I also seem to feel different. The feelings that are there before the symptoms start. I can tell when they are gone too.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: What Severe RLS is Like

Postby Madmom02 » Fri Sep 30, 2016 2:13 pm

For me, the RLS does come and go. I've had months/years of no RLS since it first started when I was in my late twenties and now (50-something). I also had a few months this summer when I was RLS-free. I'd stopped taking oxycodone (20mg, two times a day) and clonazepam (very high dose 3mg/night) over the previous nine months (easy, fast taper off the oxy & long, slow taper off the clonazepam) and the only drug I was taking was nortriptyline. No RLS.

The RLS returned about a week after I'd slow tapered off the nortriptyline in mid-July. Ramped up enough by mid-September that my neurologist put me on pramipexole (whole 'nother thread on that disaster). Still, I had almost two months of no RLS. No idea what brought it back.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: What Severe RLS is Like

Postby badnights » Sat Oct 01, 2016 3:57 am

Fascinating! I wonder what goes on inside us
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

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: What Severe RLS is Like

Postby Madmom02 » Sat Oct 01, 2016 4:10 am

Just in case someone searches for nortriptyline, I should clarify that I did have bouts of RLS while I was on it (it did lessen my back pain a lot, though).

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: What Severe RLS is Like

Postby Skippy » Mon Oct 03, 2016 12:50 am

My Mom who is 90, has almost stopped having rls. She rarely has it anymore.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: What Severe RLS is Like

Postby Madmom02 » Mon Oct 03, 2016 1:34 am

Yay, hope! Now, we just have to figure out how to make it to 90. How'd she do it?

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: What Severe RLS is Like

Postby Skippy » Mon Oct 03, 2016 1:50 am

It is a mystery!

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: What Severe RLS is Like

Postby badnights » Mon Oct 03, 2016 8:24 am

I've often read that the incidence of WED/RLS increases with age until a certain point - age 70 or 80, I forget - and then seems to decrease. I used to always laugh (bitterly) when I read that, because to me it seemed clear that all the people with RLS had died by then!

But apparently there are indications that the improvement is actually people getting better and this thing with your Mom, skippy, is a great anecdote.
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

Polar Bear
Moderator
Posts: 6657
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: What Severe RLS is Like

Postby Polar Bear » Mon Oct 03, 2016 9:30 am

I am 67 and will look forward to 70 with optimism :)
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

ViewsAskew
Moderator
Posts: 14584
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: What Severe RLS is Like

Postby ViewsAskew » Mon Oct 03, 2016 9:30 pm

Polar Bear wrote:I am 67 and will look forward to 70 with optimism :)


Indeed!
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.


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest