Just joined

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.
67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Just joined

Postby 67java89 » Wed Aug 03, 2016 2:00 pm

I'm new here. I experienced WED/RLS occasionally as a child and teen, but 2 years ago it just exploded. After 3 months of walking the floor all night, eating compulsively, and being almost unable to function, I finally agreed to try ropinirole. I've been taking a maintenance dose of .25 mg every night (if I don't take it I get NO sleep). I also need to take it if I want to fly on a plane, sit through a concert or show, read, watch a movie, nap, relax on the couch. etc. RLS has completely taken over my life.

It's overwhelming to think about Augmentation, but I know it is occurring. I could see how people could go crazy from this. I'm thankful for this community and hopeful for a cure.
Sleep is a basic need.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Just joined

Postby ViewsAskew » Wed Aug 03, 2016 2:08 pm

Hi 67java89 - so sorry you are going through this. We do empathize!

Have you had your serum ferritin checked? Or your hemoglobin? Your doctor may not realize how important this is so you may need to ask.

Do you have any idea what happened 2 years ago? Surgery and broken bones are two things that seem to cause it to worsen rapidly. Not that it matters - just wondering.
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Just joined

Postby CarlaB » Wed Aug 03, 2016 2:40 pm

Welcome to 67Java89. Lots of excellent information here. I also found the webinars helpful, too. You are not alone, and I am so sorry you have RLS.

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Just joined

Postby 67java89 » Wed Aug 03, 2016 3:23 pm

Thanks for your support! I'm still trying to untangle the knot of what kicked this off two years ago. It might have been medication related. Not surgery, trauma or bodily injury.
Sleep is a basic need.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Just joined

Postby ViewsAskew » Wed Aug 03, 2016 8:28 pm

Medication can definitely do it. I took pramipexole for PLMS and ended up with raging RLS in just 1-2 weeks. It has never receded, unfortunately, so I have an idea of what you're going through.
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: 258
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Just joined

Postby Yankiwi » Sat Aug 06, 2016 7:19 am

Hi 67java89,
As soon as I augmented on ropinerole, with advice from this discussion board, I cut back to .25 mg per night. I used to have to get up and stay up several times a night but I thought that preferable to augmentation as long as I got six hours sleep.
Now, along with the ropinerole, I take a 100mg slow release Tramadol and have been sleeping very well. If I get up to go to the loo I can get back to sleep easily.
As far as car drives, movies etc I take a 60 mg codeine which almost always works. Good luck.

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Just joined

Postby 67java89 » Sat Aug 20, 2016 4:13 pm

Sleep deprivation is torture. I described this to my husband as being zapped with an electrical prod just as I am getting into the zone of falling asleep. Then this happens over and over, the whole night, every time you try to drift back to sleep. He didn't get it, but I can't blame him for that. He hasn't experienced it.
Sleep is a basic need.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Just joined

Postby ViewsAskew » Sat Aug 20, 2016 9:30 pm

Yeah, it's almost impossible to get. I often use tickling or poking as an example as most people find it irritating (though not all!), though they can't fathom what is tickling you, lol . Even if it doesn't hurt, per se, if someone was repeatedly tickling or poking you, you'd never get to sleep. Another example I've used is putting your tongue on a battery or getting a shock. Some of us have had that happen and remember the weird feeling associated with it.

Hopefully hubby is sympathetic even if he cannot truly be empathetic!
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.

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Just joined

Postby 67java89 » Sat Aug 20, 2016 10:47 pm

He's sympathetic, at least :) I like your example of getting shocked on a battery, but somehow the shock comes from within? When I have whole body symptoms, my neck shakes and my head is like a bobblehead (under different circumstances it might be funny, but after enough sleepless nights I lose my sense of humor!)
Sleep is a basic need.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Just joined

Postby ViewsAskew » Sat Aug 20, 2016 11:40 pm

My sense of humor left me almost permanently. Sometimes it shows up again for moments...but not when I'm tired!
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.

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: Just joined

Postby 67java89 » Sun Aug 21, 2016 12:24 pm

ViewsAskew wrote:My sense of humor left me almost permanently. Sometimes it shows up again for moments...but not when I'm tired!

Agree!
Sleep is a basic need.

Jaywhoisit
Posts: 3
Joined: Mon Sep 05, 2016 8:33 am

Re: Just joined

Postby Jaywhoisit » Mon Sep 05, 2016 12:56 pm

Getting shocked by a battery, had a good chuckle at that line. Myself I like to describe it as a yawn. A muscle that just wants to yawn, over and over and over again. You can only hold back a yawn for so long.


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 2 guests