What Severe RLS is Like

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

Postby EeFall » Tue Jan 10, 2017 4:17 pm

ViewsAskew wrote:The flu, too? And both of you :-(. Waiting must be hard...


My wife got the flu first yet I am over it and she still has a terrible cough, she can't lay prone in bed. It has been about 18 days that she first came down with it, I asked her to call doc today that doesn't sound good to me.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Tue Jan 10, 2017 5:19 pm

Sounds terrible. I do recall my friend having a flu a few years ago where the cough lasted two months. She saw her doc and he said it was typical for that strain. Let's just hope it's one of those types and she is just going to take a bit more time to fully recover.
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.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Tue Jan 10, 2017 7:14 pm

Oh, wow, sorry to hear of your difficulties. Hope the news will be better than you suspect.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Tue Jan 10, 2017 7:32 pm

Hoping that you get results as speedily as possible.
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
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Re: What Severe RLS is Like

Postby EeFall » Sat Jan 14, 2017 7:16 am

My wife finally went back to doc he gave her antibiotics and cough medicine. He also thinks she still has flu and could spread it. I don't understand how it is so much worse for her.

On the bright side of things I think I am going to get a golden parachute as they call it and take a voluntary layoff in a few months! Sounds like it may work out as I can get on social security a few months after that, I will also get retirement from my company. A year later my wife will also be able to get social security.

Of course if I have something seriously wrong with me like cancer all bets are off as I will need medical insurance. It seems like doc would have let me know by now if it were serious although I am going to another doc next week. Really though it may not make much difference I suppose, in fact if I am really in bad shape it might be nice to retire while I have some time left. At the moment though I will keep my fingers crossed and hope everything will turn out for the best.

A dream come true, to be able to retire! About an hour ago I had to jump out of bed my RLS is so bad. I paced around awhile by bed then finally got on my slippers and robe and made myself a bowl of Chex rice cereal with a banana. I can tell my RLS is really bad when I have to get up and have cereal :lol: Another odd thing happened at work today, I had to take an extra 1/2 mg of Suboxone to stop moving around at work.

The first thing I thought of tonight was maybe it is the added stress of thinking of retirement but it doesn't feel like that, it feels like the RLS is just really strong at the moment. I wish I knew why these bouts happen, but I have no idea. It will be so nice to have an attack and not have to worry about going to work the next day! Yes! I will be able to stay up for days if I feel the need.

I hope everyone is doing well and that 2017 will be a good year for all of us.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Jan 14, 2017 6:33 pm

Great news.
I've always wondered about the increases that we get. I think that it may just be like a flare. I get flares with my arthritis. Like RLS, there is no rhym or reason, just a flare, that makes life miserable.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sat Jan 14, 2017 7:25 pm

I have no idea why some of my days/nights are so much worse than others.... and to tell the truth I've stopped trying to figure it out. I take my regular medication and go walkabout a lot, sometimes for most of the night.

To start trying to figure what makes a particular day worse ?? is it or is it not something I've eaten, an OTC medication, too much or too little exercise ??? There are so many permutations that I try to take it as it comes (which is regular and often) I agree with Efall's comment about not having to worry about work the next day - being retired pretty much changed how I deal with my RLS symptoms.
That is how it is at present, should my circumstances change eg to being immobile ... that's a situation that doesn't bear thinking about.
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
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Re: What Severe RLS is Like

Postby ViewsAskew » Sun Jan 15, 2017 8:44 pm

I believe we are chasing our tails when we try to figure out why. I realize it's what humans do, but it makes NO sense to keep trying - to me - after all these years of never figuring it out! it just is. Take more meds or get up and wake up. Whatever, lol.

Great news on the work situation! Very hopeful for you.
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
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Re: What Severe RLS is Like

Postby EeFall » Wed Jan 18, 2017 8:36 am

You guys are right I shouldn't agonize over why RLS worsens, I have had it long enough to know it is one of those dang irritating things about this illness, it just doesn't make much sense.

For approximately 3 years my wife and I will be without medical or dental insurance until I reach 65 (unless I figure something out). It scares me. I did google - Alternative to medical insurance - and several things do appear but the cost is still high. If I continued my insurance through COBRA it would be around $1500 a month! Yikes that is ridiculous, no way I could do that. A year from now medical insurance would be cheaper as our income will be much less so I think for at least a year we will have to find another way. America healthcare will be in flux for the next year or two also as they get rid of current healthcare plan and come up with something else.

Getting new medical insurance when you are over 60 may be hazardous to you health as it apparently will cost an arm and a leg :lol:

stjohnh
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Re: What Severe RLS is Like

Postby stjohnh » Thu Jan 19, 2017 3:13 am

Polar Bear wrote:I have no idea why some of my days/nights are so much worse than others.... and to tell the truth I've stopped trying to figure it out. I take my regular medication and go walkabout a lot, sometimes for most of the night.

To start trying to figure what makes a particular day worse ?? is it or is it not something I've eaten, an OTC medication...


This is my experience as well. I spent several months monitoring my sleep patterns and trying to figure out which things seemed to make for a good day or a bad day following a particular night. I got frustrated when it seemed as though no matter how much I tried to control what I did and what medicines I took that the next day sleepiness, mental fog, tiredness and grouchiness was completely unrelated to anything that I could determine.
Blessings,
Holland

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Thu Jan 19, 2017 3:59 pm

I waited two years, for Medicare, plus the secondary, from the time I got my disability, at age 60, to age 62. I'm now 66. I just recently changed the secondary. Had to wait until then, so the cost went down from $400 to $ 170. During the two years, I found that some doctors have a lower fee for those who don't have insurance.

Rustsmith
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Re: What Severe RLS is Like

Postby Rustsmith » Thu Jan 19, 2017 4:42 pm

When I retired they forgot to tell us that because my wife had Medicare via disability, that we needed to purchase Part B coverage for her. The insurance company caught their error when we submitted a bill for an MRI that they had pre-approved. They refused to pay because she was no longer had the normal spousal coverage due to Medicare. The list cost of the MRI was $5500, the insurance negotiated price was $2700. When I went to the MRI company and explained and offered to pay the $5500 over time, they came back to us and said that because she did not have insurance, that the cost was $500, which was about what my co-pay would have been without the Medicare complication.

So, as Deb says, many health service suppliers have a substantially lower fee for those without insurance. But like those covered by Medicare, the challenge can be finding someone who is willing to accept you as a patient.

Also, since your annual income will be much lower, you might also find that you are covered by Medicaid.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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
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Re: What Severe RLS is Like

Postby EeFall » Tue Jan 31, 2017 2:47 pm

Chilling story until the (sort of) good news of $500 rather than $5000. I have been having restless nights worrying about insurance as we become aware of how it could ruin us financially not to mention our health.

I will just have to keep looking into it. I'm in limbo as they haven't even made decision if/when I will leave work. I'm pretty sure it will happen but I am stuck in a bad situation as I know if I were healthy I wouldn't even consider leaving work but I can't take it much longer.

Rustsmith wrote:When I retired they forgot to tell us that because my wife had Medicare via disability, that we needed to purchase Part B coverage for her. The insurance company caught their error when we submitted a bill for an MRI that they had pre-approved. They refused to pay because she was no longer had the normal spousal coverage due to Medicare. The list cost of the MRI was $5500, the insurance negotiated price was $2700. When I went to the MRI company and explained and offered to pay the $5500 over time, they came back to us and said that because she did not have insurance, that the cost was $500, which was about what my co-pay would have been without the Medicare complication.

So, as Deb says, many health service suppliers have a substantially lower fee for those without insurance. But like those covered by Medicare, the challenge can be finding someone who is willing to accept you as a patient.

Also, since your annual income will be much lower, you might also find that you are covered by Medicaid.

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

Re: What Severe RLS is Like

Postby debbluebird » Wed Feb 01, 2017 11:02 pm

I remember well, when I couldn't take it anymore, just before I retired.

EeFall
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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Mon Feb 27, 2017 4:47 pm

debbluebird wrote:I remember well, when I couldn't take it anymore, just before I retired.


The first of July I will officially be retired from work and 1st of September I will get social security also. I have been very busy crunching numbers on spreadsheet and looking into finances and I think we will make it if we stay on a tight budget. Hopefully something will come up for healthcare or hopefully we will be healthy until we benone 65.

My sleep doc here is going to take over my suboxone prescription in June which makes me very happy. My doc back east could no longer fill it unless I went to see him every year. State and federal government is getting very uptight about who takes narcotics which suboxone is.

I am looking forward to retirement for sure and can't wait to sleep in lol. We have both started a diet and we will be exercising more too. After a while I may try to get totally off suboxone to see what happens, the only way I would know if I still need it.


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