new to site old to 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.
mapleleaf
Posts: 27
Joined: Thu Oct 11, 2012 5:22 pm

new to site old to rls

Postby mapleleaf » Sat Oct 13, 2012 12:46 pm

its been over 15 years since i have been diagnosed with rls and it has gotten progressivly worse...i am on short term disability because of secondary depression due to my lack of sleep due to my rls......you all know the circle, right? I am discouraged and need hope.....miraprex helps sometimes but percocet is what has given me relief....short and to the point....does the Neupro patch help? I am Canadian and it is not available here...

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ctravel12
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Location: Lake Havasu City, Arizona
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Re: new to site old to rls

Postby ctravel12 » Tue Oct 16, 2012 4:12 am

Hi Mapleleaf and welcome to this site. As far as what is available, you would have to check with your dr. Do you have a dr that understands rls, and if so, he is willing to work with you. That is so important. I also am on Mirapex and have had rls for over thirty (30) years. I am sure you will get other members offering suggestions to you. Take care and hope that you are doing better. Not getting the proper sleep is not good. I walk in your shoes, and as far as sleep. it is a miss or a hit if I get a good night's sleep. One night I slept five (5) hrs straight and I felt like I died and went to heaven. Keep us posted on how you are doing. We do care.
Charlene
Taking one day at a time

Polar Bear
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Location: N. Ireland

Re: new to site old to rls

Postby Polar Bear » Tue Oct 16, 2012 8:27 am

Please use the link in my signature which will take you to the RLS Medical Bulletin. This details medications for treatment of RLS/WED and is very useful for discussion with your doctor. There are always other medications to try, and in particular a cocktail of various medications.
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

ViewsAskew
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Location: Los Angeles

Re: new to site old to rls

Postby ViewsAskew » Tue Oct 16, 2012 9:45 pm

So sorry it's gotten worse. I wish I'd never hear that again!

Are you familiar with treatment options? Since many doctors aren't as educated as we'd wish, I think it helps us tremendously if we know as much as we can about the options. The link PB listed is very helpful. In most sections of the board, there are "sticky" posts. These have more information that helps, too.

Neurpro helps many - it may or may not be right for you. What is wrong with Mirapex? When you say it helps some, tell us more about your dose, when you take it, and what the results are.
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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: new to site old to rls

Postby badnights » Thu Oct 18, 2012 5:26 am

I'm Canadian as well, welcome to the board. I hope you can work with your doctor to solve this problem. How is your doctor? I want to ask the same questions the others have asked you!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mapleleaf
Posts: 27
Joined: Thu Oct 11, 2012 5:22 pm

Re: new to site old to rls

Postby mapleleaf » Thu Oct 18, 2012 12:52 pm

What a sense of relief to finally after all these years have people who understand me!! My family is supportive but of course do not understand what RLS is and how it affects your quality of life!! When you say my legs move and jump and crawl they look at you like your crazy and then tell you about there problems...When I take 1 mg of Miraprex at noon it takes a few hours but calms my legs a little bit depending on the day, then I take another 1mg at about 8pm. When I started the miraprex a few years ago it helped but after 6-8 months my body builds a tolerance and it does not work that well anymore. My family dr. is good and has tried many different meds and I am seeing a sleep specialist who is also a psychiatrist who specilaizes in RLS.I have been seeing this specialist for 2 years and he also has tried many differrent meds but none have been really succesful.Percocet is what is my life line! I used to take a half tab at bedtime but now find I need it sooner if I want to rest. I take it as early as 2pm and 4-6 hours after that.The morning is the worse for me because of the poor nights sleep.I was on 500mg of lyrica for over 6 months and that helped a bit but the side effects were awful! It also took me 4 weeks to wean myself off of the lyrica!! Do not take this med if you do not have to!! was terrible for me!! hope this answers a few questions to all of you. Thank you for responding!!

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ctravel12
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Location: Lake Havasu City, Arizona
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Re: new to site old to rls

Postby ctravel12 » Thu Oct 18, 2012 8:41 pm

Hi Mapleleaf I take Mirapex .125 mg. My dr had me take Mirapex before the onset of rls. I take it now at 12 noon, 3 pm and 6 pm. It seems to work; however at the 12 noon it sometimes still starts about a half an hour after I take the pill. I usually walk around to stop the rls and most of the time it does work for me. A lot of times what works for one may not work for someone else. It is a trial and error period and know that is not what anyone wants to hear. I am glad that your sleep specialist specializes in RLS and hope that one day it is under control. Like I said I do walk in your shoes and do understand on what you are going through. People that do not have RLS, or do not realize they have it, do not have much empathy.

Besides myself having rls,I am also a Celiac (Gluten-Free) and believe me if a person(s) does not have it they have no idea on what you are going through. I also found out this year that I have a kidney disease and that my GFR is very low, in fact, it is a Stage 3 and have to watch my sodium level and cannot be anymore than 1500 mg a day.

We are here for you and do understand. Take care and for sure hope that you are getting a better night's sleep.
Charlene

Taking one day at a time


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