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

Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

I have scoured the internet for RLS communities and on one of them every second post is "Cant work because of RLS", "RLS has ruined my marriage ","Unable to sleep more than 2 hours a night inthe past decade " and etc.I am only 33 is that what i am supposed to look forward to?

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is this how everyone with RLS ends up?

Post by Rustsmith »

The simple answer is that life is what you make of it. I am 68 yrs old and have been married for over 47 yrs. I had a very successful professional career and was able to travel on vacation to places that many people can only dream of seeing. I was a very successful competitive runner until I gave it up both because I had accomplished all of my goals in that field and because I was becoming afraid of being in violation of the anti-doping rules with my RLS meds.

Instead of concentrating on the negative aspects of RLS, I found ways to live my life that were compatible with my RLS, where having to keep my legs moving was a positive rather than a detriment or where my ability to function with far less sleep than others was an advantage.

As for my marriage, my wife has a different neurological condition, so we both understands the challenges that the other faces and my RLS enhanced abilities mesh well with her disabilities and vice versa.

Also, there have been a number of strides in RLS research lately and there is quite a bit that is being done right now. When you consider that RLS was barely even recognized at the time that you were born, we know far more about it and have more tools to manage it now. That is especially important when you consider other neurological conditions that have been known for far longer and yet are not as well understood.

So, to me, the future can be as bright as you make it OR it can be as dismal and depressing as you let it become. The decision is yours.
Steve

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, 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:
Fri Aug 21, 2020 11:23 pm
The simple answer is that life is what you make of it. I am 68 yrs old and have been married for over 47 yrs. I had a very successful professional career and was able to travel on vacation to places that many people can only dream of seeing. I was a very successful competitive runner until I gave it up both because I had accomplished all of my goals in that field and because I was becoming afraid of being in violation of the anti-doping rules with my RLS meds.

Instead of concentrating on the negative aspects of RLS, I found ways to live my life that were compatible with my RLS, where having to keep my legs moving was a positive rather than a detriment or where my ability to function with far less sleep than others was an advantage.

As for my marriage, my wife has a different neurological condition, so we both understands the challenges that the other faces and my RLS enhanced abilities mesh well with her disabilities and vice versa.

Also, there have been a number of strides in RLS research lately and there is quite a bit that is being done right now. When you consider that RLS was barely even recognized at the time that you were born, we know far more about it and have more tools to manage it now. That is especially important when you consider other neurological conditions that have been known for far longer and yet are not as well understood.

So, to me, the future can be as bright as you make it OR it can be as dismal and depressing as you let it become. The decision is yours.

How long have you had RLS for?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this how everyone with RLS ends up?

Post by stjohnh »

Leeroy,
While your comment about reading internet posts about RLS is indeed depressing, there are several factors that make the situation not quite as bad as it appears. The first is that generally the people that post messages on internet forums such as this are generally those that are having lots of problems. People who get good results from their treatment usually don't go to internet forums looking for solutions. There are lots of people who have moderate to good control of their RLS who just don't post at all.

Additionally, those that do post about their problems, if they get treatment that works well, frequently don't post about their success, and just get on with living life.

The natural course of RLS is NOT always steadily worsening symptoms. There are some people who have partial or complete resolution of their RLS symptoms with no treatment or change of treatment at all. How this happens is unknown.

RLS is caused by BID (Brain Iron Deficiency), but actual treatment with iron has not occurred quickly, doctors are slow to embrace new treatments. There are lots of people who can get remarkable benefit, but don't because their doctors don't know about IV Iron treatments. Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Rustsmith
Moderator
Posts: 6476
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 long have you had RLS for?
I can clearly remember having urge to move symptoms when I was in my mid-20's. However, I was not diagnosed until 2010 when my symptoms when my symptoms became so severe that I had to change doctors to find out what was happening.
Steve

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, 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 »

stjohnh wrote:
Sat Aug 22, 2020 2:20 pm
Leeroy,
While your comment about reading internet posts about RLS is indeed depressing, there are several factors that make the situation not quite as bad as it appears. The first is that generally the people that post messages on internet forums such as this are generally those that are having lots of problems. People who get good results from their treatment usually don't go to internet forums looking for solutions. There are lots of people who have moderate to good control of their RLS who just don't post at all.

Additionally, those that do post about their problems, if they get treatment that works well, frequently don't post about their success, and just get on with living life.

The natural course of RLS is NOT always steadily worsening symptoms. There are some people who have partial or complete resolution of their RLS symptoms with no treatment or change of treatment at all. How this happens is unknown.

RLS is caused by BID (Brain Iron Deficiency), but actual treatment with iron has not occurred quickly, doctors are slow to embrace new treatments. There are lots of people who can get remarkable benefit, but don't because their doctors don't know about IV Iron treatments. Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
It runs in my family.My mom is 50 and isn't bothered by it so I hope that i atleast get some time in order to have more resources to deal with it the severe symptoms.When did your symptoms start bothering you?

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this how everyone with RLS ends up?

Post by ViewsAskew »

I've been bothered since as was a toddler by the limb movements at night. By early teens, the RLS/WED started. By my thirties, I was exhausted from the combined lack of sleep, slept in a different room from my partner, and it did contribute to our eventual demise...but we would have split anyway. How do I know? Because I've now spent 20 much more complicated years with someone with whom I awakened this morning, on our anniversary (19 years together, 2nd year married - we made sure before we committed, lol), snuggling in bed, him kissing my face and asking what we were going to do today.

My life is different than I planned. But, it's wonderful in many ways. I think my biggest takeaways for someone who might need treatment soon would be:

1. Do NOT take medications at first. Period.
2. Get your iron and serum ferritin tested first.
3. Learn about how iron affects RLS/WED, and how diet might affect iron through multiple pathways.
4. If/When it comes to medications, less is more and splitting the load between two or more options is almost always better
5. Per work, a late start, working from home, a standing desk, etc. are all excellent options.
6. Find a GOOD doc, get more than one opinion, ask here about the advice given, etc. before you embark on any treatment plan.

I did have to stop work at some point - but it was more because I didn't do the above and I just did what the first doctor said. I work now, not full-time, but I also don't have to because my husband makes enough that I can work part time. I could - and I'd be lying if I said it wouldn't be harder - but I could.
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 »

I wouldn't be able to exist if I don't work..

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this how everyone with RLS ends up?

Post by stjohnh »

Ann has great advice.

I'm 72, got RLS in my 30's, diagnosed about age 60, and started medication a couple of years after that. My mother had fairly severe RLS and a sister of mine also has mild RLS.
Blessings,
Holland

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

Re: Is this how everyone with RLS ends up?

Post by LeeroyJenkins »

[quote=stjohnh post_id=103399 time=1598131471 user_id=20297]
Ann has great advice.

I'm 72, got RLS in my 30's, diagnosed about age 60, and started medication a couple of years after that. My mother had fairly severe RLS and a sister of mine also has mild RLS.
[/quote]
When did
you retire?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this how everyone with RLS ends up?

Post by stjohnh »

LeeroyJenkins wrote:
Sat Aug 22, 2020 10:04 pm
When did
you retire?
[/quote]

62. Not related to RLS problems.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this how everyone with RLS ends up?

Post by ViewsAskew »

LeeroyJenkins wrote:
Sat Aug 22, 2020 8:40 pm
I wouldn't be able to exist if I don't work..
That is likely a LONG time from now. You have no idea how things might change.
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 »

ViewsAskew wrote:
Sun Aug 23, 2020 12:21 am
LeeroyJenkins wrote:
Sat Aug 22, 2020 8:40 pm
I wouldn't be able to exist if I don't work..
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.

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:
Fri Aug 21, 2020 11:23 pm
The simple answer is that life is what you make of it. I am 68 yrs old and have been married for over 47 yrs. I had a very successful professional career and was able to travel on vacation to places that many people can only dream of seeing. I was a very successful competitive runner until I gave it up both because I had accomplished all of my goals in that field and because I was becoming afraid of being in violation of the anti-doping rules with my RLS meds.

Instead of concentrating on the negative aspects of RLS, I found ways to live my life that were compatible with my RLS, where having to keep my legs moving was a positive rather than a detriment or where my ability to function with far less sleep than others was an advantage.

As for my marriage, my wife has a different neurological condition, so we both understands the challenges that the other faces and my RLS enhanced abilities mesh well with her disabilities and vice versa.

Also, there have been a number of strides in RLS research lately and there is quite a bit that is being done right now. When you consider that RLS was barely even recognized at the time that you were born, we know far more about it and have more tools to manage it now. That is especially important when you consider other neurological conditions that have been known for far longer and yet are not as well understood.

So, to me, the future can be as bright as you make it OR it can be as dismal and depressing as you let it become. The decision is yours.
I will try to adapt.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Is this how everyone with RLS ends up?

Post by ViewsAskew »

LeeroyJenkins wrote:
Sun Aug 23, 2020 6:01 pm
ViewsAskew wrote:
Sun Aug 23, 2020 12:21 am
LeeroyJenkins wrote:
Sat Aug 22, 2020 8:40 pm
I wouldn't be able to exist if I don't work..
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.
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.

Post Reply