Is this how everyone with RLS ends up?

For everything and anything else not covered in the other RLS sections.
LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

ViewsAskew wrote:
Sun Aug 23, 2020 7:27 pm
LeeroyJenkins wrote:
Sun Aug 23, 2020 6:01 pm
ViewsAskew wrote:
Sun Aug 23, 2020 12:21 am


That is likely a LONG time from now. You have no idea how things might change.
Hopefully. My life has gone down such a path that I spent my 20s building a career and I am yet to find a wife and start a family and if work is taken away I will probably lose my sanity.
I did a similar thing. I didn't find my "forever" partner until I was almost 40. Prior to that, I looked at it as training for that. I screwed up some, learned a lot, applied what I learned...and ended up with a super-duper person.
You think even if things go south in my case I can find a regime that manages it?

Rustsmith
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Location: Colorado Springs, Colorado

Re: Is this how everyone with RLS ends up?

Post by Rustsmith »

You think even if things go south in my case I can find a regime that manages it?
Many, if not most, of us on the board have severe or very severe RLS rather than the milder forms. Although there are challenges at times, most of us have found treatments to keep it under fairly reasonable control. That often requires the combination of several meds and some experimentation, but the key take away is that we have reasonable control most of the time.

If I had to identify the most challenging thing for most of us, it has been finding a physician who is 1) knowledgeable about RLS and/or 2) is willing to work with us. Fortunately, the insufficient knowledge of RLS among medical providers that we have had to face is something that will hopefully start to improve in the not too distant future. The Foundation is doing a lot to try to educate doctors now and the younger ones now seem to be more receptive to working with patients who understand the proper way to approach treating RLS.
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this how everyone with RLS ends up?

Post by ViewsAskew »

My mom is in her seventies. She does quite fine. My sister, my brother, in their forties - they do fine. My uncle - who really suffered - worked until he retired a few years ago.

Most of us do fine. The horror stories - mine likely included - are usually because they didn't do the 5 or 6 thing I listed earlier.
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.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

Rustsmith wrote:
Sun Aug 23, 2020 10:07 pm
You think even if things go south in my case I can find a regime that manages it?
Many, if not most, of us on the board have severe or very severe RLS rather than the milder forms. Although there are challenges at times, most of us have found treatments to keep it under fairly reasonable control. That often requires the combination of several meds and some experimentation, but the key take away is that we have reasonable control most of the time.

If I had to identify the most challenging thing for most of us, it has been finding a physician who is 1) knowledgeable about RLS and/or 2) is willing to work with us. Fortunately, the insufficient knowledge of RLS among medical providers that we have had to face is something that will hopefully start to improve in the not too distant future. The Foundation is doing a lot to try to educate doctors now and the younger ones now seem to be more receptive to working with patients who understand the proper way to approach treating RLS.
How much would you say yours is controlled in percentages?I know its kind of specific but it would help me understand better.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is this how everyone with RLS ends up?

Post by Rustsmith »

There are various parts to my RLS that my current treatment addresses differently. There are the RLS urges to move, the insomnia that it causes, I also have PLMS and the depression that is caused by the insomnia and my meds. A recent sleep study found that the meds have the PLMS 100% controlled. I would guess that my urge to move problems are about 95% controlled, but it could be that what is left is something that I have simply gotten used to and don't notice. Insomnia remains a problem, I would guess that it is about 50% controlled and the depression that is caused by poor sleep and my meds is probably only about 25% controlled. So, that is my current area of emphasis.

But when I was working, these percentages were much different. That was before I was on meds and used exercise and chronic jet lag as "treatments" for what I now know as RLS. I would guess that back then, everything was about 90% controlled. At times, I would love to go back to that lifestyle, but COVID and the $10K/month for airline tickets makes that highly impractical now.
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.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

Rustsmith wrote:
Mon Aug 24, 2020 6:36 pm
There are various parts to my RLS that my current treatment addresses differently. There are the RLS urges to move, the insomnia that it causes, I also have PLMS and the depression that is caused by the insomnia and my meds. A recent sleep study found that the meds have the PLMS 100% controlled. I would guess that my urge to move problems are about 95% controlled, but it could be that what is left is something that I have simply gotten used to and don't notice. Insomnia remains a problem, I would guess that it is about 50% controlled and the depression that is caused by poor sleep and my meds is probably only about 25% controlled. So, that is my current area of emphasis.

But when I was working, these percentages were much different. That was before I was on meds and used exercise and chronic jet lag as "treatments" for what I now know as RLS. I would guess that back then, everything was about 90% controlled. At times, I would love to go back to that lifestyle, but COVID and the $10K/month for airline tickets makes that highly impractical now.
I think that i can live a similar lifestyle to your younger self but thats when it comes to exercise.When it comes to to traveling by plane i can't because i am deathly afraid of heights,haha.

Rustsmith
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Location: Colorado Springs, Colorado

Re: Is this how everyone with RLS ends up?

Post by Rustsmith »

When it comes to to traveling by plane i can't because i am deathly afraid of heights,haha.
I am also afraid of heights, or to be correct, I am afraid of falling from heights. But thankfully, airplanes never bothered me. Maybe that is because my first flight was when I was only six months old. I would also always choose an aisle seat, away from the window. But that was for the leg space and the ability to get up and move around which is driven by my RLS. About 2 yrs ago I agreed to trade seats with a little boy so that he could sit next to his father. Unfortunately, the kid had a window seat. I didn't regret changing, but it was the most miserable two hour flight I have been on lately.
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.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

Rustsmith wrote:
Mon Aug 24, 2020 6:36 pm
There are various parts to my RLS that my current treatment addresses differently. There are the RLS urges to move, the insomnia that it causes, I also have PLMS and the depression that is caused by the insomnia and my meds. A recent sleep study found that the meds have the PLMS 100% controlled. I would guess that my urge to move problems are about 95% controlled, but it could be that what is left is something that I have simply gotten used to and don't notice. Insomnia remains a problem, I would guess that it is about 50% controlled and the depression that is caused by poor sleep and my meds is probably only about 25% controlled. So, that is my current area of emphasis.

But when I was working, these percentages were much different. That was before I was on meds and used exercise and chronic jet lag as "treatments" for what I now know as RLS. I would guess that back then, everything was about 90% controlled. At times, I would love to go back to that lifestyle, but COVID and the $10K/month for airline tickets makes that highly impractical now.
How do you plan to deal with the insomnia and depression?I am sorry if i am pestering you but incase I ever go through what you people are going through I would like to have a guiding star of sorts and at least know where to begin

Rustsmith
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Posts: 4802
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is this how everyone with RLS ends up?

Post by Rustsmith »

How do you plan to deal with the insomnia and depression?
That is going to be tough. Most times, my doctor would prescribe a sleep med for me, but I have mild sleep apnea and live at high elevation, so that could be risky when combined with the opioids. The "normal" next step for the depression would be to prescribe Wellbutrin, but I had a VERY bad reaction to it last year.

The approach for now is that I will be seeing a psychiatrist/psychologist this week to investigate ways to address the depression with the hope that if that can be "fixed" then my subconscious will allow me better sleep. I think that I figured out the issue with Wellbutrin last night (it wasn't tied to my RLS) and I suspect that there are three issues with my depression (only one is tied to my RLS and that shouldn't apply to anyone else), so I don't know which way the pscy doctor will go. It is the first time in a long time where I will be going into a doctor's appointment without a clear idea of what happens next.
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.

ViewsAskew
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Posts: 16172
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this how everyone with RLS ends up?

Post by ViewsAskew »

One thing to remember, LeeroyJenkins, is that if you do, by that time, treatments might be VERY different. It may not happen at all. If it does, make a note somewhere to remind yourself to come back here then and talk to the folks here before you embark down any road. We'll likely be aware of current trends, alternatives, etc.
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.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

Rustsmith wrote:
Tue Aug 25, 2020 1:58 pm
How do you plan to deal with the insomnia and depression?
That is going to be tough. Most times, my doctor would prescribe a sleep med for me, but I have mild sleep apnea and live at high elevation, so that could be risky when combined with the opioids. The "normal" next step for the depression would be to prescribe Wellbutrin, but I had a VERY bad reaction to it last year.

The approach for now is that I will be seeing a psychiatrist/psychologist this week to investigate ways to address the depression with the hope that if that can be "fixed" then my subconscious will allow me better sleep. I think that I figured out the issue with Wellbutrin last night (it wasn't tied to my RLS) and I suspect that there are three issues with my depression (only one is tied to my RLS and that shouldn't apply to anyone else), so I don't know which way the pscy doctor will go. It is the first time in a long time where I will be going into a doctor's appointment without a clear idea of what happens next.
I hope that therapy will help you! I have personally been in therapy in prder to address some childhood trauma and cognitove behavioral therapy has been a life saver.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

ViewsAskew wrote:
Tue Aug 25, 2020 7:12 pm
One thing to remember, LeeroyJenkins, is that if you do, by that time, treatments might be VERY different. It may not happen at all. If it does, make a note somewhere to remind yourself to come back here then and talk to the folks here before you embark down any road. We'll likely be aware of current trends, alternatives, etc.
You people have been magnificently helpful! Of course i will ask you if i have any questions or decide to start any RLS treatments.

Oozz
Posts: 109
Joined: Wed Oct 11, 2017 8:09 pm

Re: Is this how everyone with RLS ends up?

Post by Oozz »

I just turned 34 and I have quite severe RLS. It’s been up and down, but humans are adaptive and find ways to live and enjoy life. My way of life has changed and the version of my life I thought I would have is much different because of RLS, but that isn’t a bad thing. I’m 100% sure my situation is much harder than yours, so don’t feel bad about yourself and don’t think that you can’t have a fulfilling life. The RLS controlled me, prevented me from enjoying life for two years, but once I accepted it and kinda let go of how life is supposed to be, it made things so much easier.

My sleep doesn’t effect my drive, my ambition, or my social life. I can’t even vigorously exercise because of my situation, but I stay health by eating clean, stretching/yoga, and walking whenever I can. I can’t do things like hiking, so I organize dinners or game nights to asocial stay connected. Since COVID I’ve even started playing video games with friends to stay close.

I work in finance and it’s very very competitive, but I’ve managed to get promoted twice in the past four years (I’m a manager). My friends and family have all accepted this a part of me, as well as my girlfriend. My manager and coworkers know as well.

Some days are hard, so hard that you want to give up. Life will seem so unfair and you may feel like nobody around you understands. I’ve let those moments get the best of me, and I could have very easily turned into one of those stories you may have read about. Hell, I have a long way in front of me so that could be me one day. I know Everyone’s situation is different and I have a lot of empathy for their suffering, but a lot is up to you and how you adapt. Will you let this define you?

Or will you learn to manage the hard days. It’s okay complain and be in despair, but will you stay there? When the burden gets to heavy for you, will you learn how to lean on others for help? When you haven’t slept in a week, its hard to find anything in life to be grateful for, but it’s there if you look. Will you search to find it?

I recall being in Hawaii for a week and not sleeping for two days straight. For a while I thought about how much better it would have been if I could have slept. But, now I all I think about are moments by the water and eating pancakes overlooking the ocean.

Hopefully my story and others offset some of the horrors you have read.

LeeroyJenkins
Posts: 14
Joined: Thu Aug 20, 2020 6:15 pm

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

Oozz wrote:
Sat Aug 29, 2020 8:51 pm
I just turned 34 and I have quite severe RLS. It’s been up and down, but humans are adaptive and find ways to live and enjoy life. My way of life has changed and the version of my life I thought I would have is much different because of RLS, but that isn’t a bad thing. I’m 100% sure my situation is much harder than yours, so don’t feel bad about yourself and don’t think that you can’t have a fulfilling life. The RLS controlled me, prevented me from enjoying life for two years, but once I accepted it and kinda let go of how life is supposed to be, it made things so much easier.

My sleep doesn’t effect my drive, my ambition, or my social life. I can’t even vigorously exercise because of my situation, but I stay health by eating clean, stretching/yoga, and walking whenever I can. I can’t do things like hiking, so I organize dinners or game nights to asocial stay connected. Since COVID I’ve even started playing video games with friends to stay close.

I work in finance and it’s very very competitive, but I’ve managed to get promoted twice in the past four years (I’m a manager). My friends and family have all accepted this a part of me, as well as my girlfriend. My manager and coworkers know as well.

Some days are hard, so hard that you want to give up. Life will seem so unfair and you may feel like nobody around you understands. I’ve let those moments get the best of me, and I could have very easily turned into one of those stories you may have read about. Hell, I have a long way in front of me so that could be me one day. I know Everyone’s situation is different and I have a lot of empathy for their suffering, but a lot is up to you and how you adapt. Will you let this define you?

Or will you learn to manage the hard days. It’s okay complain and be in despair, but will you stay there? When the burden gets to heavy for you, will you learn how to lean on others for help? When you haven’t slept in a week, its hard to find anything in life to be grateful for, but it’s there if you look. Will you search to find it?

I recall being in Hawaii for a week and not sleeping for two days straight. For a while I thought about how much better it would have been if I could have slept. But, now I all I think about are moments by the water and eating pancakes overlooking the ocean.

Hopefully my story and others offset some of the horrors you have read.
Thank you for the insight friend.The kind of motivation and help you and the others here gave me is what I was looking for.

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