What Severe RLS is Like

For everything and anything else not covered in the other RLS sections.
yawny
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Joined: Sun Nov 08, 2015 4:20 pm

Re: What Severe RLS is Like

Post by yawny »

Eefall, congratulations! I imagine in some respects it's going to be like a continuous summer vacation...you decide what you do and when...enjoy!

ViewsAskew
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Re: What Severe RLS is Like

Post by ViewsAskew »

So happy to hear this!!!
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.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: What Severe RLS is Like

Post by EeFall »

Thanks for all the replies. I am afraid I went into forgetful mode again and forgot to come back to this site. I am getting that way - yikes. I should change my handle to Treebeard. I have been home for a month now and I also, as driving away from work, had the most wonderful feeling and I don't miss it at all :lol:

The suboxone is costing me $275 cash a month and that includes a $100 off. I halved my doses and this is second day. I slept well last night. I don't understand it, although I know the half life of suboxone is huge. Usually within an hour of missing a dose I would begin withdrawal symptoms. Maybe because I am still taking it, the dose is enough at 1/2, I am sure I will know soon.

I mentioned before here that the only way to know if RLS ever goes away is to quit the meds slowly and see. I am keeping my fingers crossed. If this works in a week or two I will half dose again. It would be a miracle even if it only requires half the dosage cause half the price.

I have lost 16 pounds as of today since leaving work. We are both on Atkins. Also we both exercise. My wife does lots of walking and if I don't do that I spend a few hours in the garden everyday (which I find really fun! Weird.) My grandpa was a farmer and maybe it rubbed off a bit. Take care. I need to create a reminder to come here!

ViewsAskew
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Re: What Severe RLS is Like

Post by ViewsAskew »

YAY! Wonderful to hear your update.
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.

Polar Bear
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Re: What Severe RLS is Like

Post by Polar Bear »

Great to hear from you and to hear you sounding so positive.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: What Severe RLS is Like

Post by EeFall »

Can't believe night 2 was success with 1/2 meds! Thanks for the replies!

Yankiwi
Posts: 548
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: What Severe RLS is Like

Post by Yankiwi »

Best wishes, it seems like your life is just beginning!

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

Re: What Severe RLS is Like

Post by debbluebird »

Maybe, it's that you are no longer stressed ? Glad to hear from you too.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: What Severe RLS is Like

Post by EeFall »

debbluebird wrote:Maybe, it's that you are no longer stressed ? Glad to hear from you too.


The stress is still there but in a different way. Now I don't know if we make enough to keep our lifestyle. I still don't know exactly how much we will be living on. Our insurance runs out end of September. So really the stress is now because of survival mode. Main reason I have limited my meds is I won't be able to afford them. Also of course very curious about if RLS may have just gone away.

When doctors can't tell exactly why it happens in first place, it is certainly bizarre. Almost 18 years I have had this severe and it totally trashed my life. After 3 days of even taking 1/2 of Suboxone I am feeling more like my old self. I slept fine again last night. Yesterday even my wife noticed a lethargy in me. I suppose that may come from withdrawals, don't know yet. Now that it is actually working the 8th day I will take 1/4 of my 4 mg a day.

If that works I think I will do cartwheels :lol: If that works I will call my old doc at Johns Hopkins and see what he has to say. I can't imagine a nicer present than wellness. I have lost 18 pounds now on Atkins since leaving work and exercise much. Exercise used to make my RLS worse. Another indication it has changed.

So have any of you heard of people where the severe RLS just goes away? I'm pretty sure all 3 of my sleep doctors over the years have mentioned the possibility but then they and 2 other sleep doctors had said I had it about as bad as it gets. As early as about 1989 a guy I knew at work who had sleep problems thought I had RLS, at the time I thought he was wrong :lol:

debbluebird
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Re: What Severe RLS is Like

Post by debbluebird »

At first when we retired it was difficult, but some how it all worked out. We don't have the same level of living, but that's ok. We have adjusted.
Good luck

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: What Severe RLS is Like

Post by EeFall »

debbluebird wrote:At first when we retired it was difficult, but some how it all worked out. We don't have the same level of living, but that's ok. We have adjusted.
Good luck


I think it will workout eventually too. Dang I forgot to take Meds an hour late and on top of that I am having withdrawal symptoms. The positive thing is no RLS. It will most likely be a long month or 2 to keep reducing suboxone until zero or whatever RLS allows.

I don't think it will be the hell of getting off the 5 Meds that occurred around 5 years ago to go on suboxone but I knew when I got on it I could tell it was even more addictive than methadone for me.

My wife and I had fun last night washing both cars on carport. We used to do that way back in our younger years. Fun and less expensive lol

ViewsAskew
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Re: What Severe RLS is Like

Post by ViewsAskew »

So nice to see you happier, Ee.
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.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: What Severe RLS is Like

Post by EeFall »

ViewsAskew wrote:So nice to see you happier, Ee.


Incredibly good day today our two granddaughters are staying over night. I am actually feeling much better taking 1/2 Meds.

debbluebird
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Re: What Severe RLS is Like

Post by debbluebird »

Wonderful news !

Polar Bear
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Re: What Severe RLS is Like

Post by Polar Bear »

Have a wonderful time - what age are your granddaughters?
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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