RLS Getting worse. Need help!

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srclosson
Posts: 2
Joined: Tue Oct 14, 2014 9:03 pm

RLS Getting worse. Need help!

Post by srclosson »

Hi Everyone,

I'm a 41 year old female, who has struggled with RLS for most of her life. Although, it's been getting worse in the last number of years. I finally was able to start meeting with a sleep specialist a couple years ago, and I'm not taking mirapex (2 tablets at about 6:30pm every night), but it does not seem to work anymore. My legs get so restless I'm literally awake all night sometimes. I got to bed wiggling, I'll sleep a little, and I wake up wiggling. I try to snuggle, but I can't. I just cannot sit still.

Perhaps it's the case that there is nothing anyone can really do, and so if I've just found a number of people who understand, that is great. However, if there are some suggestions, I'll try just about anything.

I've tried the following:
    Putting weird items in the foot of my bed
    Iron suppliments
    Magnesium suppliments
    Mirapex
    Moderate exercise

So far, everything seems to have had it's season, but the problem eventually comes back. Please tell me there is hope, and that I won't be spending the rest of my life away from loved ones because I cannot stop wiggling.

Some other interesting things about me?

Well, I like to ultra run. So far, I've ran 3*50k races, 1*50 mile, 1*100k, and 1*125k. I'm preparing for 2*100 mile races this year. I'm not the fastest, but I love the people, love the atmosphere, and love the challenge.

I'll leave some other interesting things for future posts. Looking forward to your replies!

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

Re: RLS Getting worse. Need help!

Post by Yankiwi »

Hi srclosson,
You will get a lot of tips from people on this forum. Like you, I've had rls most of my life and finally went onto medication 14 months ago. I started on .25mg ropinerole, took more gradually then augmented and cut back. Currently I take 1.5 tablets, about .37mg, at 8.15pm. Two hours later at my bed time I take a 50mg Tramadol. Upon my first waking up (any time from 1.30 to 4.30 if I'm very lucky) I take another Tramadol. If I wake up again before I want to get up I do a series of yoga stretches which I posted about. Look for "Yoga -- long slow sun salutation a help" in this forum. I only do the standing parts now as they stretch my legs. I know which parts ache (different every night) and stretch them with various exercises. Downward dog helps a lot. Before going on medication I did the whole Yoga Norman series and then had to stay up for about an hour several times a night so my life has improved a lot. I also take 60mg of codeine before a long car drive or movie which also helps.
Your running is inspirational, I like to walk but don't run.

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

Re: RLS Getting worse. Need help!

Post by Rustsmith »

Hello srclosson and weldome to the discussion board.

Like you, I am a runner but I do not do ultras. I have finished 29 marathons, but now only do the "shorter" distances. I am also one of the faster ones in that I like to walk away with some of the AG hardware after a race.

As for your RLS/WED, it sounds a lot like you are experiencing augmentation with your mirapex (generic name is pramipexole). Take a look at the links in my signature to get an idea whether you thing that this might be your problem. Also look through the links in badnights's signature for more information on augmentation. I experienced this after nine months on pramipexole, but others have had issues in less than a week or after many more years than you. It varies from person to person and unfortunately, it is something that many doctors are not familiar with and do not know how to treat.
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.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS Getting worse. Need help!

Post by ViewsAskew »

I'd agree that augmentation sounds very likely. What dose are you taking and what time do you take 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.

Polar Bear
Moderator
Posts: 8797
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: RLS Getting worse. Need help!

Post by Polar Bear »

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. 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

srclosson
Posts: 2
Joined: Tue Oct 14, 2014 9:03 pm

Re: RLS Getting worse. Need help!

Post by srclosson »

I'll look into augmentation. I'll also get my ferritin levels checked. I did get this done a couple of years ago, and it was a 10. Then, I took a supplement, it really helped, and then it got worse again, but my levels still were around 40 if I remember correctly. Now I see that I may need 100? I'll email my doctor and ask if I can get a test done.

Thank-you for all your replies so far!

PS. I'm going for a 100-mile week this week. 20k done, 140 to go :).

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