For Anyone Who Thinks RLS is a Joke

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
EeFall
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For Anyone Who Thinks RLS is a Joke

Postby EeFall » Tue Oct 09, 2018 6:06 pm

I used to be a nice guy before RLS 20 years ago began to creep into my life, although I now know it was around for decades before that. I used to have friends and family who loved me. Almost 19 years ago I was diagnosed with severe RLS. It became slowly worse over the years and I went through dozens of medications and combinations of medications. Even shots of iron. I saw many doctors, sleep doctors, even shrinks.

I slept 10 hours last night and I feel like I haven't had much sleep. I never sleep that long but lately things have been so bad I guess my physical body just told the brain to butt out. Doesn't matter though because the sleep I get doesn't help me mentally much. I don't understand it, but that is the case.

While I will go out and about, mentally I am almost a total recluse. I have no friends and would not want to make any either as I know how eventually I would hurt them by having an angry outburst. My family just figures I am an angry man who needs to see a shrink. My wife is the only one who really knows the truth, but even she doesn't always understand. I wish I would never have gotten married, not fair to her.

So while the Suboxone allows me to sleep (not great sleep or even average sleep) and not pace the floor constantly, the combination of Suboxone and RLS alters my personality. It is so weird. I have actually been contemplating going totally off medication and living whatever life I have left in my natural state. It's funny my wife wanted to watch the Twilight saga so we watched all the movies, 5 movies, I am not sure. But even she noticed the similarity between me and the vampires and werewolves. The instant change in personality to anger like Dr Jekyll and Mr Hyde.

Maybe I should just be me and go for a week without sleep and pass out and then repeat. Maybe I was meant to be like that. I am going in a few days to get my new prescription for Suboxone and I think that after that I will wean myself off of it (because of the dependence on Suboxone I can't just quit it) and see what it would be like. Even now I work outside much of the day, just too much energy. Maybe it would be okay to live like a vampire who never sleeps. Of course I would never sit down also, but maybe I can do it. Why not try? How many people would like the energy I have to stay up for a week at a time. I could spend the nights in my man cave while my wife sleeps.

Yeah, severe RLS is no joke for relationships but maybe now that I have nothing else to lose I should embrace RLS rather than try to repress it. I cannot self terminate (The Terminator II movie) but maybe I can finally live how nature intends me to be and it will either work or finally put me down like the mad animal I am. Gee, I feel almost happy thinking about it.

stjohnh
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Re: For Anyone Who Thinks RLS is a Joke

Postby stjohnh » Tue Oct 09, 2018 7:01 pm

EeFall,

First, it sounds like you are depressed. If you are contemplating suicide, you need to talk to your doctor today. If you are depressed, but not suicidal, you still need to talk to your doctor.

On the meds: I don't recall if you have had an IV Iron infusion. If not, you should. The International Restless Legs Study Group recommendations now put IV Iron as first line therapy. Otherwise, I would consider a low dose of pramipexole (1/2 of a 0.125mg tablet) and see if you can reduce your Suboxone dose by using a small dose of pramipexole.

You might also explore the possibility of using dipyridamole with you doctor. The doc probably won't go for it, but if he/she does, it may help you feel much better in the daytime.

Blessings,
Holland
Blessings,
Holland

EeFall
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Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Tue Oct 09, 2018 9:33 pm

Holland,

Thanks for your concern. I can’t commit suicide I am too much of a coward and there are still a few billion things I would like to know about our existence.

Doctors know I am depressed and they basically tell me they would be also living in my shoes. Sometimes it is just a fact of life, a rather miserable life to endure.

I have taken just about everything under the sun for medication until nothing would work except Suboxone. Mirapex worked for 6 years, until around 2011 and then it made RLS worse.

It is a long shot but living without any medication may actually be the last thing I can try. After several days of no sleep I would get rather like a zombie but I will attempt to fight it.

I might take Kratom to keep me more up when I quit Suboxone. Actually it is sort of exciting to think I could always be awake and moving. Maybe that is the way I should have been all along.

The only real downside is that I won’t be able to drive a car anymore, but then I can always drive using Xbox and Forza lol.

I did have iron infusions. I have way too much in blood now. Didn’t help.

Polar Bear
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Re: For Anyone Who Thinks RLS is a Joke

Postby Polar Bear » Wed Oct 10, 2018 12:29 am

EeFall..... I have to say it, it does sound to me like you should be talking to your doctor about your mood and your quality of life. Which no doubt you've done several times.

Honestly, I know how bad it is when not sleeping properly. Currently I'm functioning on about 3 hours fragmented sleep. That's a little less than usual (4) but do know well all about passing the night hours while the other half sleeps blissfully.
Your talk of staying awake for a week at a time disturbs me, perhaps you are being tongue in cheek...... You probably are..... But I still feel a vibe coming through your post .... Have you ever discussed your mood with your dr, what does your dr suggest in this regard.
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: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Wed Oct 10, 2018 3:50 am

Polar Bear,

I am being serious. If I don’t take medication then I really never sleep or sit down. I’m just saying that maybe I should try to live with it and not take Suboxone anymore. I’m retired and don’t need to work. Why not embrace the total actual hell that god has given me? He created a monster and so let me live as he made me. Maybe I was meant to live without any sleep or rest. I am looking forward to it. It is almost like a super power to be able to go day after day walking the earth without rest. If it doesn’t work I figure maybe I will get rest in the end.

Polar Bear
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Re: For Anyone Who Thinks RLS is a Joke

Postby Polar Bear » Wed Oct 10, 2018 2:03 pm

EeFall, I also would walk constantly and forever without medication. RLS was with me 24/7 for several years in both arms and legs before I was ever prescribed medications.
My husband certainly knew what he was getting as I was unmedicated when I met him.

Upon starting the ropinerole it never ever really worked on it's own but is now supplemented with codeine phosphate. With regard to symptoms, I get by, doing something active when there is breakthrough. However, symptoms or not.... my biggest struggle is finding sleep.

I wish you well my friend. Perhaps stopping your medications could have a surprisingly positive twist in the tale.
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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Location: USA

Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Thu Oct 11, 2018 1:44 am

Polar Bear,

Perhaps I am growing tired of the illness and it has finally driven me a little mad, or maybe a lot. A 100 years ago or whatever age had no medication for RLS what would we have done then? Just think though if the power of thinking itself could let us instead of thinking of severe RLS as being such a bad thing that we instead looked at it as a gift. If we could but control our minds to think it a glorious thing to never sleep and to never rest. No one knows exactly what sleep is, maybe it is a hindrance from our animal past. Maybe we are the first of the new kind of human that needs not sleep or rest.

What a waste of time sleep truly is! Also we are anything but lazy. I can even now work non stop for hours and hours at a time. I only sit because it is expected that I do, it is part of what humanity expects. If I can break the view within my own mind that I am lacking something good as sleep and rest and really believe that I have been given a new way to live, maybe I could actually enjoy it. What could one accomplish if they could always be awake and active. We would live a 1/3 longer than previous humans and not be distracted by time lost sleeping and relaxing.

Maybe tiredness is an illusion. Maybe we are brainwashed by our upbringing to believe we must sleep and rest and so don’t understand in reality we are a new superior breed of human. Or, on the other hand I may be completely wrong, but at least I will try, really try to embrace my condition and talk myself into thinking it something wonderful.

Polar Bear
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Re: For Anyone Who Thinks RLS is a Joke

Postby Polar Bear » Thu Oct 11, 2018 4:17 pm

Ahh... but we are told that we need sleep to aid recovery for our organs etc. that without sleep we are more prone to x, y and z.

However, I must agree with you regarding the keeping on going..... I am always at something. My husband cannot understand how I can be doing chores when I've had no sleep in, perhaps, 48 hours.
When we get home from an 11 hour flight.... (Me being the only person on the flight not sleeping) he crawls up the stairs to bed and I empty the cases and get the laundry on the go.

Or, on the other hand I may be completely wrong, but at least I will try, really try to embrace my condition and talk myself into thinking it something wonderful.

:thumbup: :thumbup:
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

JimmyLegs44
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Re: For Anyone Who Thinks RLS is a Joke

Postby JimmyLegs44 » Thu Oct 11, 2018 7:42 pm

EeFall wrote:I have actually been contemplating going totally off medication and living whatever life I have left in my natural state.


After being on medications for roughly 15 years (first DA’s, then Lyrica), I went through the same process…wondering what life would be like off meds. I always suspected the medications affected my personality and made me a bit reclusive. On October 31st I will have been off medications for one year. The Lyrica never did help much anyway, and the augmentation from Mirapex severely jaded my view of medications. So I thought, piss on it, might as well find out what it’s like to be off meds for a while. How much worse can it be? As it turned out, not much worse. I originally was thinking just a month or two, but it’s been almost a year and I’ve never looked back.

I have noticed subtle changes in my personality (for the better). I’m a bit more sociable now, and I don’t have the angry outbursts anymore. I had a couple outbursts when I was on Lyrica that really scared me (and my family). My sleep is fragmented and not nearly as much as I’d like, but I find that the sleep deprivation doesn’t affect me as much as I thought it would. During the day, I feel fine.

My wife took a faith-based fitness class a couple of years ago and came home with a handout with a motivational phrase on it…”If God brings you to it, he will bring you through it”. I used that phrase to help get me through the Mirapex and Lyrica withdrawal.

Godspeed.
The best way out is always through. - Robert Frost

Rustsmith
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Re: For Anyone Who Thinks RLS is a Joke

Postby Rustsmith » Thu Oct 11, 2018 11:49 pm

Last month when I had to stop taking methadone due to the extreme apathy that it was causing, I initially thought "how much worse can it be than it was before I started treatment?" After all, I went for several years of severe RLS before changing doctors and being diagnosed in less than a minute. The first 24 hrs wasn't too bad, but as the methadone in my body started to get really low, I found out how much my RLS had progressed during the last six years. I knew that I couldn't go back to the methadone because I was starting to feel emotions once again, so I realized how bad I had gotten in that regard. But on the fourth night after only getting a total of six hours of sleep in three days, I almost fell asleep while walking around our living room. I was starting to fall when I woke up. If I hadn't caught myself at just that moment, I would have ended up hitting my head against a marble table top. A concussion would have the least of my injuries and I probably would have ended up on the hospital at 4AM. My local hospital would not have given me anything for my RLS, so it would have been one of my worst fears, being confined to a hospital bed with full blown RLS. Thankfully, my doctor got my replacement opioids to me the next day, so I finally was able to sleep the next night.
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.

badnights
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Re: For Anyone Who Thinks RLS is a Joke

Postby badnights » Fri Oct 12, 2018 5:43 am

Maybe I should just be me and go for a week without sleep and pass out and then repeat. Maybe I was meant to be like that. I am going in a few days to get my new prescription for Suboxone and I think that after that I will wean myself off of it (because of the dependence on Suboxone I can't just quit it) and see what it would be like. Even now I work outside much of the day, just too much energy. Maybe it would be okay to live like a vampire who never sleeps. Of course I would never sit down also, but maybe I can do it. Why not try? How many people would like the energy I have to stay up for a week at a time. I could spend the nights in my man cave while my wife sleeps.

Yeah, severe RLS is no joke for relationships but maybe now that I have nothing else to lose I should embrace RLS rather than try to repress it. I cannot self terminate (The Terminator II movie) but maybe I can finally live how nature intends me to be and it will either work or finally put me down like the mad animal I am. Gee, I feel almost happy thinking about it.
This thinking goes through my brain more and more often now. I am working, so I haven't done it yet, but I think "why am I giving my life to my job, maybe if I quit my meds and make it through to the other side, maybe 6 months later, I will be better off and start living a real life again". Although I wonder if I don't properly remember how hellish it was and wouldn't make it thru the first week.

Then I think, OK, I make it through all the withdrawals, what if my symptoms are still unbearable six months later? What if I can't think, and my life is a haze of torture? I go back on meds and all I've done is waste the 6 months that I was off plus stress my body so much that I've taken two years off the end of my life.

I somehow don't see myself keeping moving day after day until I drop dead. I would get so tired I wouldn't be able to walk in a straight line; how could I do anything useful or fun in that state? The desire to get off meds for me has to lead to a state of functioning better than I am now. I want ME back, I want a clear mind and a quick laugh; if going off meds doesn;t give me that, then what's the point?

Unlike you, I don't believe god made me this way, I think I messed it up somewhere along the line. Antibiotics that destroyed my gut biome and paved the way for noxious microorganisms to take up residence, ultimately creating neurological problems. Or environmental toxins, or a combination of things. I do NOT feel like I was meant to be this way. I DO feel that all the medications I'm taking are having a multitude of unintended effects that are probably not worth the benefits. I want to get off everything and see where I stand. I'm with you on that.
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
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EeFall
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Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Sun Oct 14, 2018 7:53 pm

JimmyLegs44,

Exactly what I am talking about and I am happy to hear it is working for you. I've already gotten most all of my relatives hating me and I know it has a lot to do with the Suboxone I take. I took Lyrica also, at one point I was taking 5 medications at the same time for RLS. Augmented on Mirapex years ago also and I kind of wonder if it didn't also have to do with permanently altering my mind. I am going to begin to get off Suboxone by taking less today. I have done it before and it is not fun but this time I am looking forward to it. Also I have to shell out over $250 USD a month for Suboxone as insurance will not pay for it. Fortunately my wife is similar to your wife as she goes to bible study and is into being positive. I used to like to go to church but avoid it like the plague, I am a walking time bomb as far as being around people and blowing up in rage. I hope it helps, can't hardly be any worse.

”If God brings you to it, he will bring you through it” Awesome thanks!

JimmyLegs44 wrote:After being on medications for roughly 15 years (first DA’s, then Lyrica), I went through the same process…wondering what life would be like off meds. I always suspected the medications affected my personality and made me a bit reclusive. On October 31st I will have been off medications for one year. The Lyrica never did help much anyway, and the augmentation from Mirapex severely jaded my view of medications. So I thought, piss on it, might as well find out what it’s like to be off meds for a while. How much worse can it be? As it turned out, not much worse. I originally was thinking just a month or two, but it’s been almost a year and I’ve never looked back.

I have noticed subtle changes in my personality (for the better). I’m a bit more sociable now, and I don’t have the angry outbursts anymore. I had a couple outbursts when I was on Lyrica that really scared me (and my family). My sleep is fragmented and not nearly as much as I’d like, but I find that the sleep deprivation doesn’t affect me as much as I thought it would. During the day, I feel fine.

My wife took a faith-based fitness class a couple of years ago and came home with a handout with a motivational phrase on it…”If God brings you to it, he will bring you through it”. I used that phrase to help get me through the Mirapex and Lyrica withdrawal.

Godspeed.

EeFall
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Location: USA

Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Sun Oct 14, 2018 8:04 pm

You have a point there about falling, I will have to workout a way not to injure myself. I can't even count the number of times I have fallen asleep on my feet and slammed into a wall though, but as one gets older I can see how that could become very dangerous. At one point when I was getting off of 5 drugs at once for RLS I was up for over 6 days. At one point I "woke up" in living room having landed on my knees. Apparently I thought I was a circus performing and remember jumping from an elephant.

Rustsmith wrote:Last month when I had to stop taking methadone due to the extreme apathy that it was causing, I initially thought "how much worse can it be than it was before I started treatment?" After all, I went for several years of severe RLS before changing doctors and being diagnosed in less than a minute. The first 24 hrs wasn't too bad, but as the methadone in my body started to get really low, I found out how much my RLS had progressed during the last six years. I knew that I couldn't go back to the methadone because I was starting to feel emotions once again, so I realized how bad I had gotten in that regard. But on the fourth night after only getting a total of six hours of sleep in three days, I almost fell asleep while walking around our living room. I was starting to fall when I woke up. If I hadn't caught myself at just that moment, I would have ended up hitting my head against a marble table top. A concussion would have the least of my injuries and I probably would have ended up on the hospital at 4AM. My local hospital would not have given me anything for my RLS, so it would have been one of my worst fears, being confined to a hospital bed with full blown RLS. Thankfully, my doctor got my replacement opioids to me the next day, so I finally was able to sleep the next night.

EeFall
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Location: USA

Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Mon Oct 15, 2018 4:46 pm

My appointment with the doctor to continue my prescription for Suboxone was different this time. I had to give a urine sample. I viewed the results online and it was a drug test. I also had to fill out several pages regarding if I were drinking, taking drugs, and mood questions. My sleep doctor said this is now all required in the state I live in. One of the results was positive because they tested me for buprenorphine which is the active drug in Suboxone. So not only did they want to know if I was taking drugs or drinking but they wanted to know if I was actually taking my Suboxone. Big brother is watching.

Last night I was going to cut down on Suboxone but I failed to do so, I think my subconscious is playing tricks as I didn't remember until this morning that I was going to cut down. After taking Suboxone for 6 years or so I can see it is going to be a challenge to even try to stop taking it. Yikes.

EeFall
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Location: USA

Re: For Anyone Who Thinks RLS is a Joke

Postby EeFall » Thu Oct 18, 2018 5:14 pm

Don’t think cutting down on Suboxone will work, even not taking a quarter of my Suboxone I start freaking out after 4 hours. Oh well.


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