I New Here.

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.
Gale103
Posts: 4
Joined: Sat Feb 25, 2017 2:38 pm

I New Here.

Postby Gale103 » Sun Feb 26, 2017 8:07 pm

Hello ,
This is my first time to join a forum about my restless leg issues. I have had rls for about 20yrs. I am now 57. I have taken many medications for my restless leg. All work for awhile. Then gradually symptoms would reappear. I was referred to my first neurologist in July. I was given 600mg of a drug called Horizant. That worked for about 4 months and the it was back. Now I'm taking 1200mg of this drug and I'm already getting restless leg back. It occurs sometimes once a week sometimes more. For the last year I've noticed most of my symptoms are in my feet. I joined this group to educate myself on different ways to relieve my restless leg and have a group of people that actually can understand how horrible this is to live with. I hope to learn a lot here.

jul2873
Posts: 340
Joined: Thu Nov 15, 2012 7:32 pm

Re: I New Here.

Postby jul2873 » Sun Feb 26, 2017 8:42 pm

Hi Gale,

I'm so sorry you've been dealing with this horrible disease all on your own for so long, but welcome to our message boards! It sounds like you've tried almost everything. I use a plant called kratom to manage my RLS. It is the powdered leaf of the kratom tree, from South East Asia, and available on the internet. I think it functions like a mild opioid. If you search these boards you'll find lots of info about it. It is illegal in Vermont, Wisconsin, Indiana, Tennessee, and Alabama, although we are working hard to change that. Good luck to you!

Rustsmith
Moderator
Posts: 2333
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: I New Here.

Postby Rustsmith » Sun Feb 26, 2017 8:48 pm

First off, welcome to the group. As you deduced, we all understand what you are experiencing since we all have to live with this nightmare.

You are quite fortunate to have found a neurologist who knows enough about the treatment of RLS to have started you out with Horizant, even though it is a bit pricey. Horizant works well for some of us, but does not always help with the movement problems for the rest. Many find that it (and Horizan't close and less expensive cousin gabapentin) is the most effective med for helping us fall asleep.

Since Horizant worked for a while and now has become less effective, your doctor may suggest a change to Lyrica. Lyrica is in the same family of meds as Horizant and gabapentin, so it could end up being more effective since Horizant worked for a while. Switching to gabapentin would be useless because Horizant turns into gabapentin once it enters the blood stream.

The two other classes of drugs that your doctor could eventually suggest are the dopamine agonists (pramipexole, ropinirole and rotigatine) and the opiods (there are many but methadone or tramadol are often the first choice). Dopamine agonists work great for the relief of movement issues, but can eventually end up creating worse problems than they were intended to treat (see the Augmentation forum for more info on this). As for the opiods, many doctors cannot or will not prescribe them and the red tape involved with actually getting them can be extensive. But they usually are quite effective and it has been shown that the chances for addiction issues are very low for RLS patients.

Hope that helps. If you have any specific questions, ask away :D
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.

legsbestill
Posts: 299
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: I New Here.

Postby legsbestill » Sun Feb 26, 2017 9:11 pm

Have you had your serum ferritin tested? Getting your iron levels up can be very helpful for some. You need to get the actual figure - not just to hear you are 'normal' which is what I am told every time I get it done. Kratom works for me also.

SLEEPY ANGEL
Posts: 49
Joined: Fri Feb 10, 2017 4:34 pm

Re: I New Here.

Postby SLEEPY ANGEL » Mon Feb 27, 2017 12:43 am

By SLEEPY ANGEL....W
WELCOME, and I hope you will get plenty of great advice here; at least you won't feel so alone, and you will always have a place to ask questions. I'm fairly new too and it still is a learning process to navigate around and see everything! LOTS of compassionate people here! Again, welcome.

Polar Bear
Moderator
Posts: 6621
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: I New Here.

Postby Polar Bear » Mon Feb 27, 2017 11:25 am

As stated by legsbestill, you need to know what your serum ferritin level is. Generally a doctor will accept that a level of around 20 may be normal. This does not apply for an RLS Sufferer. We want it to be up around 100, or more. Indeed some sufferers need it to be up around 200 to get some benefit.
This test isn't usually does in ordinary blood tests and you should specifically ask for it.
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

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: I New Here.

Postby badnights » Fri Mar 03, 2017 7:23 am

Welcome Gale103. I'm sad you aren't finding relief and have had to come here. You are right, it's a dreadful condition, even though it sounds funny when we try to explain it.

How often were you having symptoms before you started the Horizant? When you get symptoms, how long do they last? We are advised not to try for complete relief from symptoms, because - for some reason - the symptoms return if we do; whereas if we try for relief of most but not all symptoms, they remain the same for a long time without worsening.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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