What Severe RLS is Like
Re: What Severe RLS is Like
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!
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Re: What Severe RLS is Like
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.
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.
Re: What Severe RLS is Like
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
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!
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!
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Re: What Severe RLS is Like
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.
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.
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Re: What Severe RLS is Like
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
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
Re: What Severe RLS is Like
Can't believe night 2 was success with 1/2 meds! Thanks for the replies!
Re: What Severe RLS is Like
Best wishes, it seems like your life is just beginning!
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Re: What Severe RLS is Like
Maybe, it's that you are no longer stressed ? Glad to hear from you too.
Re: What Severe RLS is Like
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 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
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Re: What Severe RLS is Like
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
Good luck
Re: What Severe RLS is Like
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
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Re: What Severe RLS is Like
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.
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.
Re: What Severe RLS is Like
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.
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Re: What Severe RLS is Like
Wonderful news !
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Re: What Severe RLS is Like
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
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