Finally somebody that understands RLS!!

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Finally somebody that understands RLS!!

Postby dixielee » Thu Jul 13, 2017 11:51 pm

I am relieved and excited to chat with other people who have RLS and PLMD. My Dad used to talk about not sleeping well because of "jumpy legs". Now I know what he was talking about. My RLS has gotten worse in the last 5 years, I am in my 50s.
I limit my caffeine and aspertame and have a healthy diet and weight.
I have read many good books and have tried many suggested remedies but with limited success. I resisted taking medication but gave in when my Doctor recommended it and I was suffering from such poor sleep.

I now take Mirapex a low dose of .125 tablet form. I have had to increase it gradually and found good relief for over a year at a 1 1/2 tablets. But now the symptoms are returning. Should I increase my Mirapex again? If so will a 1/4 or 1/2 a tablet make the difference? I will be talking with my Doctor but I am interested to know what works for you, when you have had to make an increase?
The silver lining for me is that walking is my best treatment. So I walk every evening and do leg stretches before bed.
I think one of the hardest things about RLS is that I can do all the same regular routines and then still not be able to fall asleep without another 15 minutes of walking in place..somewhere in my home that won't disturb others.
I am blessed that I experience no pain and my legs work well!
I look forward to sharing and learning from this community of fellow RLS sufferers! :D

stjohnh
Posts: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Finally somebody that understands RLS!!

Postby stjohnh » Fri Jul 14, 2017 12:21 am

Welcome Dixielee. You have come to the right place, there are lots of folks here that know lots about restless leg syndrome, it's treatments and possible ways of helping.
While increasing the dose of mirapex above what you are taking is probably standard medical recommendation, I and some other folks here think that keeping the dose of mirapex or other dopamine agonist at a very low level is part of the trick to avoiding augmentation.

Those that have been through augmentation and dopamine agonist withdrawal following augmentation will generally do absolutely anything possible to avoid having to do that again.

I suggest keeping your dose of mirapex at 0.125 mg and adding either Gabapentin or Kratom to what you are already taking. Talk to your doctor.

It would be helpful to have a little bit more information about your history of RLS and the symptoms. It's also important to be sure that your ferritin level has been checked and is above at least 75 and preferably above 100 as iron is crucial to keeping augmentation and RLS symptoms as tolerable as possible.
Last edited by stjohnh on Fri Jul 14, 2017 12:29 am, edited 1 time in total.
Blessings,
Holland

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Fri Jul 14, 2017 12:28 am

Thanks I appreciate your insights. I do want this medication to continue to work as long as is possible.

It's pretty cool that people from all over the world can support each other with this common ailment.

Blessing back to you,
Dixielee

stjohnh
Posts: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Finally somebody that understands RLS!!

Postby stjohnh » Fri Jul 14, 2017 12:32 am

Reports on this board seem to show a trend amongst RLS specialist physicians in that more are using low doses of multiple medications rather than increasing the dose of one medication up to the limit.
Blessings,
Holland

Rustsmith
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Location: Pueblo, Colorado

Re: Finally somebody that understands RLS!!

Postby Rustsmith » Fri Jul 14, 2017 12:48 am

Dixielee, welcome to the discussion board. As Holland indicated, kratom is an herb that is helpful to many of us. Unfortunately, kratom is not legal everywhere and there are frequent threats by various governments to make it illegal.

Another "herb" that is helpful for those of us fortunate enough to live where it is legal is marijuana. Most of us who do use it use an edible form, such as cookies or candies. Depending upon the specific marijuana product, it can help with RLS induced anxiety and can be one of the more effective sleep aids.

Finally, gabapentin is a medication that can be very helpful in allowing us to fall asleep more naturally. It often does not help with the need to move, but it is often a more effective for insomnia than any of the normal sleep meds. Gabapentin also has the benefit that it does not cause augmentation like mirapex and the other dopamine agonist meds.
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.

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Fri Jul 14, 2017 1:50 am

Thanks for this good information! I don't feel so alone in this struggle. I look forward to many more interactions with you good folks!
i live in Northern Ontario, Canada so I will check into kratom and gabapentin.

Just back from my 3/4 hour walk- so many good benefits from having to walk!

When I hear of so many other people that have more serious ailments, like cancer and debilitating arthritis, I am thankful that RLS is all I have.

Always hopeful!
Dixielee

Polar Bear
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Location: N. Ireland

Re: Finally somebody that understands RLS!!

Postby Polar Bear » Fri Jul 14, 2017 9:41 am

dixie - you have mentioned reading many good books. I wonder if this is one of them.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
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.

You sound quite upbeat and positive - always hopeful.......
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

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Fri Jul 14, 2017 10:57 am

Thanks Betty
No that book is not one I have read yet. Thanks for the suggestion. I have read another one by Buchfuhrer and Hening called Restless legs syndrome coping with your sleepless nights. It was the most helpful so far.

Appreciate your insights. I am an upbeat and positive person :) by God's grace!

Always hopeful,

Dixielee

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Fri Jul 14, 2017 10:30 pm

Thanks for those of you have responded! I spent some time today reading the various threads and gleaned all kinds of good info.
I am off the grid for the next week. Taking vacation and a break from technology too.

I look forward to connecting with you again.

Always hopeful!
Dixielee

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Mon Jul 31, 2017 10:24 pm

Back on line and interested in learning more and connecting with others who know RLS. My RLS is moderate and I have a "bag of tricks" that usually works for me. I don't sit a lot in the evening as I find walking and standing is much better than sitting. I try to always have an evening walk, I have found 3/4 of an hour works well. I take .200 Mirapex and usually 1000mg of calcium carbonate and 220 mg. of magnesium malate about 1 hour before bed. Most nights that works well enough for me to get o.k. sleep. But those nights when RLS and PLMD are crazy, good sleep is elusive. I find I get the most relief from getting up and walking for 15 minutes and then doing some leg stretches. It's just so hard to think clearly when I am only partially awake and need to decide to get up and walk and then return to bed for better sleep.
I would love to hear what is in your "bag of tricks", especially for when your RLS wakes you up in the night.
I am trying not to increase the Mirapex and will research Kratom. I would like to stay away from other drugs if I can, but if they are well recommended I will consider them. As with most of the rest of you I am sceptical about any new suggestion. But love hearing your personal stories of success.
I have a Doctors appointment coming up and want to go well read and with your good recommendations.
So pleased to find this community of people who understand.

Always hopeful, but sleepy tonight!
Dixielee

Rustsmith
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Location: Pueblo, Colorado

Re: Finally somebody that understands RLS!!

Postby Rustsmith » Mon Jul 31, 2017 10:36 pm

Dixielee, if you want to be well read, then you absolutely need to get a copy of "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Henning. Get the 2nd edition, which costs about $30 on Amazon. It was written for doctors, but is understandable for those of us who do not have an MD.

As for my bag of tricks, soaking my legs for just a few minutes in water that is as hot as I can stand seems to turn off the need to move long enough for me to get back to bed and fall asleep. In fact, sometimes the problem is getting out of the tub without falling asleep there.

You are wise not to increase the dose of your Mirapex beyond 0.2 mg. The current recommendation is that we should not be taking more than 0.25mg. If you keep it as low as possible to control your RLS about 90% of the time, then you will be able to stay on it longer and hopefully delay augmenting on it.

Finally, make certain that your doctor orders a ferritin test. When the results come back, get the number and do not accept "it is normal". Normal for others is anything over 20. For those of us with RLS, and especially those taking a dopamine agonist like Mirapex, the value should be over 75 and preferably over 100. If you are below those numbers, then you should probably also be taking a daily iron supplement like iron sulfate combined with vitamin C. But that is also something to talk about with your doctor.
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.

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Mon Jul 31, 2017 11:08 pm

Thanks Steve

When you soak your legs in the tub how long do you stay in, like 5 minutes, is enough for it to work?

Thanks for recommending that book. I will order it!

Always hopeful, but sleepy tonight

Dixielee

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

Re: Finally somebody that understands RLS!!

Postby Rustsmith » Tue Aug 01, 2017 1:22 am

I often find that I can feel the "stressful" feeling in my legs melting away just as soon as I lower them into the hot water. But I usually let them soak for about 5 minutes because I know that they will start to cool off as soon as I stand up and start drying them. My goal is to get back into bed while they are still extra "toasty", otherwise there is a chance that the feelings will come back.

But with that said, when I started I would soak them until my entire body started feeling warm. So in those days I was trying to elevate my body temperature just a bit. I don't do that now, but maybe I have trained my brain and my body not to react quite as quickly as it used to.

As an alternative, I have also found that when I am traveling and do not have access to a tub that I can do almost as well by turning the shower up to as hot as I can stand it and then letting the water hit the base of my skull and the top of my spine. It doesn't work as well, but often it allows me to get to sleep without my legs acting up again.
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.

Yankiwi
Posts: 355
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Finally somebody that understands RLS!!

Postby Yankiwi » Tue Aug 01, 2017 3:30 am

Hi Dixielee,
When my legs get really bad I put an ice pack on the offending leg—they take turns. I also read my iPad on the night setting in the dark and do downward dogs to stretch my calves which are the main place that has symptoms. Codeine is great in the movies or other confined situations.
About a week ago my legs wouldn't settle down and I was jumping around erratically and hurt my knee, what a bummer. Now I hear a crunching noise when I walk up stairs but hopefully that will go away.

dixielee
Posts: 9
Joined: Thu Jul 13, 2017 12:54 pm

Re: Finally somebody that understands RLS!!

Postby dixielee » Tue Aug 01, 2017 12:06 pm

Thanks for sharing your 'bag of tricks'. i will check out downward dog stretch as my calves are really tight too.

i will consider the ice pack idea, especially these hot summer nights!

Always hopeful,

Dixielee


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