What Severe RLS is Like

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

Postby EeFall » Sat Aug 06, 2016 5:53 pm

There is person out in the ocean away from any land and they are treading water, no one else around to help. If they stop treading water they will drown.

That is a person with severe RLS without taking medication nor any thing to help them with what they have.

Picture the same person who finds a life vest and puts it on. Now they sort of rest but if sleep comes they could also swallow water, sputter, and try to remain awake once more.

That person is on medication or whatever that helps them with RLS.

I have been trying to think of what it is like and that is what it feels like to me. The loneliness, being by oneself, and the sea, not knowing what is beneath, the fear. The night and days there, the storms coming and going, the waves, the cold. It all fits. Suboxone is my life jacket. Right now my insurance company is trying to take Suboxone from me. My doctor is working with them but it could be they won't pay for it, costing me possibly $500 or more a month in USA dollars. The other thing is that they give me prescriptions for 6 months, I was at end of this and have been struggling to get the subscription filled again for the past 3 weeks (luckily I have extras or I would have already have been in withdrawals, plus having severe RLS at the same time). Finally I got my prescription and gave it to the pharmacy (on my birthday) and they tell me it does not have some sort of seal on it. I am still struggling to get the prescription in time so I don't go mad and loose my job while in the state where I live they are handing out free heroin to addicts while they attempt to take medication away from me that allows me to work. It is so maddening.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sat Aug 06, 2016 6:19 pm

Sorry you're having difficulties getting your prescription processed, is the lack of this seal some sort of inefficiency? I hope it is sorted in time for you.

Your descriptions are very descriptive and honest.

As for the subject of free heroin to addicts v an rls sufferer trying to get appropriate medication - more than maddening !!
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 » Sat Aug 06, 2016 6:41 pm

it truly is maddening, 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
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Re: What Severe RLS is Like

Postby EeFall » Fri Aug 12, 2016 3:40 am

I still have not gotten my meds. I go into sweats within a 1/2 hour of taking them late. I can't even imagine how bad the withdrawals would be.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Fri Aug 12, 2016 4:04 am

This is just not right.
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

Postby Polar Bear » Fri Aug 12, 2016 4:24 pm

EeFall - are you anywhere near to being sorted.
I just cannot imagine being without medication.
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 » Fri Aug 19, 2016 4:49 pm

Believe it or not the problem has not been solved. Insurance company has refused to pay for it even though my RLS doctor has approved it and they have paid for it for 3 years. The doctor has appealed and I should hear soon. Supposedly the doc was sending me something to tied me over but I haven't seen it yet. I ended up having my wife talk to the doctor and insurance company and the pharmacy. I just can't deal with it. I can't deal with much anymore, I am surprised that I still have my job. It could be I will have to rely on Kratom but it doesn't work well enough for me to work, it would just allow me to sit down, at least for awhile. I doubt it would allow me to sleep much as one builds a tolerance for the stuff and I can already take 15 grams of it and it doesn't do much.

If they say no my wife said we should just pay for it. Easier said than done. If they don't value my life maybe I shouldn't value it either is what is in the back of my mind. Hopefully everything will work out but I am not so sure this time. I won't be pacing again for 24 hours a day, that will never happen, I am too old and tired to do that anymore. I did that on and off for years and it is like walking back and forth as a zombie in the waiting room of hell.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Fri Aug 19, 2016 10:23 pm

This just infuriates me. As well as saddens me tremendously.
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.

stjohnh
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Re: What Severe RLS is Like

Postby stjohnh » Fri Aug 19, 2016 10:29 pm

EeFall, I'm sorry I don't remember your medication history, have you tried morphine or methadone? Both are very inexpensive if you can get them and can tolerate the side effects.
Blessings,
Holland

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Aug 26, 2016 6:21 pm

They will pay zero for Suboxone so i now pay $370 a month and got a $100 off for having an AARP card, my wife went down to pick up prescription and she handed them the card thinking nothing would come of it, we have never used it before. Thank God! $270 is more than $45 a month I used to pay but much less than $370, or $500 or $600 I was told. Pharmacy did say price of suboxone fluctuates. Anyway it is basically like getting a negative raise at work but I'm still kicking and feeling much better.

EeFall
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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Fri Aug 26, 2016 6:26 pm

stjohnh wrote:EeFall, I'm sorry I don't remember your medication history, have you tried morphine or methadone? Both are very inexpensive if you can get them and can tolerate the side effects.


Over the last 17 years I have taken everything for it but morphine it all has eventually stopped working and so I am on suboxone. It may come to morphine eventally but then I wouldn't be working as I now am. I have a highly technical job and if my brain is clouded with drugs there is no way I could work. I just hope suboxone continues to work.

Rustsmith
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Re: What Severe RLS is Like

Postby Rustsmith » Fri Aug 26, 2016 6:44 pm

EdFall, so glad to hear that you were finally able to get your Suboxone prescription filled. Your AARP membership has now not only paid for itself and but you will quickly recover everything that you have paid for membership every since you joined. :D
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.

Sojourner
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Re: What Severe RLS is Like

Postby Sojourner » Sat Aug 27, 2016 6:31 am

E, I am also glad you have been able to get things sorted out. I am so sorry for all that you have had to go through and pray that it will never happen again. Take care.

Wishing all who visit here some peace this night
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ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Sat Aug 27, 2016 7:12 am

Having it is better than no...but at those prices, it is clearly a tough choice for many. Hope this doesn't happen again for a long time.
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: 1390
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: What Severe RLS is Like

Postby EeFall » Sun Aug 28, 2016 11:48 am

Thanks everyone, I sure am happy about it, that it is over for another 6 months. They give me 5 months of refills. Rustsmith, AARP! Yikes, who knew. :D


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