Severity of rls

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Rangerfan51
Posts: 6
Joined: Tue Sep 22, 2015 5:59 pm

Severity of rls

Post by Rangerfan51 »

Good morning. I am a male 64years old and have rls severe. Lately more so over the past decade. Inherited it from my deceased Mother. There is a ten question questionnaire on how mild-severe you might have rls. Answer 1 is being mild to 4 being severe. I truthfully answered these questions as if I wasn't already have been on 6 milligrams of requip a day. My score was 31(which is severe) have had the rls in the past ten years move to my other extremities,taking two Vicodin Es 7.5 along with 4 milligrams of requip per night has helped but if anybody tells you that based on my level of severity that acupuncture,yoga,hot baths,meditation,massages will help is totally wrong. Plus the side effects if you up the dosage on requip is not good. Compulsive gambling,and strong sexual urges usually occur. Been fighting these demons for past 7-8years. Nothing,and I mean nothing is going to help me at my level of severity. I know this rls pretty well and only prescription drugs will help along with the requip. Can't go To a movie,play,airplane ride without my drugs about an hour before. Have no hair left on my legs. Arms now have rls. Like to hear from someone in my current situation. Quit listening to people telling you that these other methods work. They have no clue what we are going through.my neurologist says the same thing. Nothing out there to help me other than what I am taking/doing now. This rls is with you for life,period.

Polar Bear
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Re: Severity of rls

Post by Polar Bear »

Welcome - this disease is really horrible. I also have it in my arms and have been a sufferer of 30+ years, so fully understand the social difficulties.

A daily dosage of 6mg is very high. I take 4mg daily since the days of when this was considered to be the max dosage. Some experts now consider the max to be much much less than this.

How familiar is your neurologist with the treatment of RLS/WED?
Who has said that there is nothing else out there to help you?
There are many other medications, and combinations of medication--- which can often work very well.
I use a combination.

I suggest you get this book - it is easy to read and can be used for discussion purposes with your doctor... hoping he would be receptive....
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
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

Rustsmith
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Location: Colorado Springs, Colorado

Re: Severity of rls

Post by Rustsmith »

Rangerfan, your note almost sounded like you were describing me until you got to your current treatments. I am a year younger, got it from my father and my score was 30.

I also agree with everything that Polar Bear has said. There is almost always another mode of treatment available other than simply increasing dosage. My treatment has become ineffective during the past couple of months due to augmentation on my second dopamine agonist. My symptoms right now are closely approaching that 30 level WITH my meds. I finally get to see my doctor on Monday and expect that he will take my treatment in a completely different direction that hopefully will bring me way back down the scale.
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.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Severity of rls

Post by JimmyLegs44 »

Rangerfan51, are you familiar with augmentation? If not, check out the materials on this website, the plethora of posts on this discussion board, as well as the various webinars over the past year or so on the topic. It is possible that the Requip is actually making your symptoms worse as a result of augmentation. It affects people taking dopamine agonists (Requip, in your case) at a rate of about 7-8% per year, meaning after about 12 years or so, 100% of people will experience augmentation from the DA. Because of this, RLS experts are finally starting to figure out that dopamine agonists are NOT an effective long-term treatment for RLS. Most experts agree that the DA should be stopped when severe augmentation occurs. Unfortunately, this is very difficult to do, and the experts do not necessarily agree on the best approach to take to get off the DA. In the end, though, it is certainly possible your symptoms would be less severe after the Requip is out of your system.

Rangerfan51 wrote:Quit listening to people telling you that these other methods work.


I respectfully disagree with this statement. It very likely works for them, or at least provides some short-term relief, otherwise they wouldn't be telling you about it. Everyone is different when it comes to RLS, so it might not work for you, but if someone wants to pass along some potentially helpful method or trick to cope with this dreadful disease, by all means do it, IMHO.

Rangerfan51 wrote:This rls is with you for life,period.


I disagree with this also. Experts now know that RLS can go into remission. We are not necessarily stuck with this for life.
The best way out is always through. - Robert Frost

ViewsAskew
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Re: Severity of rls

Post by ViewsAskew »

Great advice so far. Please do look into augmentation - it's not 100%, but for many of us, symptoms that move to the arms are a key way to determine you have augmentation. Your neuro may not be that familiar with it - most neuros do not see folks like us that often. When I was augmented, I scored 37. With good treatment, my score is around 10. Most times I'm in the 14-20 range.

I think I can commiserate when you say that you shouldn't listen to others and their treatments. After being here for years, I'd temper that a bit. There are so many compassionate folks here; so many unfortunate souls who have similar scores; and so many well-read, educated, and smart people, that there is much here worth listening to. I wouldn't want to listen to most people on other sites - but here? I'm happy to and learn a lot from them.
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.

Yankiwi
Posts: 548
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Severity of rls

Post by Yankiwi »

ViewsAskew wrote: I wouldn't want to listen to most people on other sites - but here? I'm happy to and learn a lot from them.


I totally agree, this is the only forum I read with confidence. Even then, it's important to sift out what is helpful to each of us as there are many conditions that either do not apply to our particular variety of rls or the drug/treatment in question is not available to us.

Polar Bear
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Re: Severity of rls

Post by Polar Bear »

My WED/RLS has been with me for 30+ years.
Just to note that I had symptoms for about 15 years getting worse gradually until it was 24/7 in both legs and arms even before I started medication.
I started (unsuccessful) medication about 15 years ago ( don't even know what it was), then ropinerole about 10 years ago. The ropinerole never ever worked on its own and eventually cocodamol was supplemented which was a blessing.
I wish I had known more RLS information at that time and perhaps instead of supplementing the ropinerole, it could have been completely changed to a different medication.

When such severe symptoms existed before taking ropinerole it is indeed not easy to know what might now be augmentation.

With regard to treatments such as acupuncture, yoga et al, I am happy to hear what works for some folks. Even though none of them appear to help me.
Betty
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

Rangerfan51
Posts: 6
Joined: Tue Sep 22, 2015 5:59 pm

Re: Severity of rls

Post by Rangerfan51 »

Thank you all for great advice and valued opinions. Bottom line is whatever test you get done by lab work,different treatments with my severity and others like me drugs are the only answer and most will tend to mess with you as far as mood swings,urges,etc. augment ion I understand but to stop your legs/arms moving all around is drugs either prescribed by a doctor that are pretty potent. Whether it is sleep habit forming pills,requip,mirapex,Vicodin to go along with the requip for me,no drug off the store shelf is going to get it done. I have tried vitamins,calcium,magnesium,etc. didn't even phase me. Heavy duty drugs is it,period. Ain't gonna happen any other way for severe sufferers of rls.

Rangerfan51
Posts: 6
Joined: Tue Sep 22, 2015 5:59 pm

Re: Severity of rls

Post by Rangerfan51 »

The day that your legs/arms stop moving all over the place with severe rls is when you are put 6ft down in a underground condo. Tilt,game over. Peace at last.

Rustsmith
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Re: Severity of rls

Post by Rustsmith »

A bit of gallows humor, but oh so true. :lol:
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.

Polar Bear
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Re: Severity of rls

Post by Polar Bear »

""an underground condo""" - haven't heard that one before :lol:
Betty
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

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: Severity of rls

Post by sleepdancer2 »

Let's just talk about "if" you are experiencing augmentation. I spent years dealing with augmentation, thinking that my worsening symptoms were a progression in the severity of my disorders. (I have RLS and PLMD) I struggled on in misery and fear of how bad it might get if I tried to come off the dopamine agonists. Didn't realize that my augmented symptoms were much worse than my non-augmented symptoms would turn out to be like. I've been on and off different meds for over 10 years. What you don't know at this point is if you'd need the same level of strong meds if you weren't trying to control augmented symptoms. Once I got off the dopamine meds (and I strongly suggest a weaning period!!) my RLS became negligible. Still had limb movements to deal with, but their severity dramatically decreased. I am fortunate to be able to control those symptoms with a TENS Unit and need no medication of any kind for my symptoms. I realize everyone's experience will not be the same. I just want to encourage you that improvement is not without hope. Augmentation is a special kind of hell. If you come to find that is your case, do some reading on this forum and deal with it. It could change your life.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Rangerfan51
Posts: 6
Joined: Tue Sep 22, 2015 5:59 pm

Re: Severity of rls

Post by Rangerfan51 »

Good for you my friend. Your are in the very very minority. I envy you. Nothing will help my severity except the bad drugs. No Doan 's back pills,aleve,Tylenol,Ben gay, ambien,meditation,yoga,walking across hot coals,etc is going to get rid of my rls. Again happy for you.

Rangerfan51
Posts: 6
Joined: Tue Sep 22, 2015 5:59 pm

Re: Severity of rls

Post by Rangerfan51 »

The person who posted that rls can go into remission by some experts have about the same odds as hitting the powerball,mega millions,cash/fantasy five,pick 4 and cash 3 numbers all in one day. Not to mention eliminating the deficit,solving world hunger,and bringing peace to the Middle East. And reversing aging.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Severity of rls

Post by JimmyLegs44 »

Rangerfan51 wrote:The person who posted that rls can go into remission by some experts have about the same odds as hitting the powerball,mega millions,cash/fantasy five,pick 4 and cash 3 numbers all in one day. Not to mention eliminating the deficit,solving world hunger,and bringing peace to the Middle East. And reversing aging.

I posted that. I believe it was Dr. Earley who mentioned that RLS can and does go into remission, in his July 2015 webinar entitled "Drug Holiday". Here is a link. Watch it at your leisure:

http://www.willis-ekbom.org/members-onlywebinar

FYI...Dr. Earley is one of the foremost authorities on RLS in the United States, if not the world, and has extensive clinical experience and therefore he is in a much better position to know whether or not RLS can go into remission than you are. I'm sorry your RLS is so severe, but I doubt it will improve until your attitude does.
The best way out is always through. - Robert Frost

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