New and frustrated

[nosleep4me]

Hi from another poor soul who thrashes and jiggles through the night - and even sometimes during the day. I think RLS has visited me for years, just didn't know what it was. I remember a couple of long plane rides being absolutely miserable sitting in those tiny seats, not being able to relax or sleep. And even as a kid, I was one of those who had to jiggle or rock themselves to sleep. Definitely something haywire up in the old belfry.

Anyway, I'm hypothyroid (17 years) and have fibromyalgia, Sjogren's Syndrome and peripheral neuropathy. The latter two hit me in the last 7-8 years and are a real struggle. I was taking Lyrica 300 mg. daily and decided to stop (with my doctor's help to wean off it) due to some serious vertigo, daytime drowsiness, and weight gain issues. While on it, I started having 2-3 nights weekly severe RLS episodes - in the past, I'd have maybe one night a month. That was strange as Lyrica is one of the meds used to treat RLS. Hmm. Anyway, I'm totally off it, and the RLS hasn't gone anywhere. Rheumatologist referred me back to Neuro who started me on 1 mg Requip daily before bedtime. Last night the PN was pretty bad, and maybe I waited too long to take the Requip - but it didn't work, and boy what a horrible night. Neuro said if this happened, to take a 2nd dose, and I did. No relief, just some nice nausea to add to the other misery.

I'm reading a lot of the Sticki Notes here to get more informed about RLS. It's strange that the Requip didn't help at all. Does it take a while to kick in? Or does this mean I need a higher dose or different med? I know we all react differently to meds. Some of the other ones I take are Ultram, Relafen and Plaquenil (just started). I've never been anemic so it's doubtful to be a problem. My B12 levels have been borderline in the past, so the Neuro is testing those again. We'll see how that goes.

My main issue is to get control of sleeping. Fatigue is a very nasty side effect of both FM and SS. It knocks me on my dupa as my husband's grandmother would say. Sleep is a necessity to keep me functioning.

Glad to find this BB, there's a lot of good info. - thanks for all your hard work.

M contrary

[Aiken]

Welcome to the forum, nosleep. You sound like you're on top of things, so I don't have too much to suggest to you off of the top of my head. I'd only double-check one thing:

You said you've never been anemic, so I was curious how you were tested for that. There are at least four different ways to test your iron, all for different aspects of the iron system in your body. The one that matters to us is ferritin, and testing "normal" is not necessarily normal for an RLS patient, as our levels need to be 50% higher, or more, than a regular person's (100+ vs. 60-70). Do you happen to know what your results were?

Oh, one other thing. We have a concept here, called something like, "staying ahead of it," which means to make sure your meds are in effect at the time of onset. If you let the RLS start before you take your meds, they tend not to be as effective even once they're in effect. This probably has something to do with stress affecting body chemistry and creating a vicious cycle.

By the way, that's a cute picture.

[ViewsAskew]

To piggyback of Aiken's suggestion, the Requip takes a good 60 minutes to work IF you take it prior to the RLS starting. If you wait, it might not work at all.

zBTW, did he have you start at 1 mg? It's not a lot, but starting that high that quickly can increase the chances of side effects. That increases non-compliance. So, docs usually suggest starting out lower - like .25, then .5, then .75, etc. You stop whenever you get to the dose that knocks out the RLS.

[bigu47]

I'll second the recommendation the moderator made, for myself I take Requip a good hour before RLS symptoms commence. My RLS usually starts around 7 to 7:30 PM, so I take it around 6:30 to control the sensations.

My concern these days is that augmentation may be starting since my symptoms are as early as 4 PM.

Lee N.

[Sojourner]

n4, another welcome to you. It's not really strange that a med. designed to make rls better doesn't really make it better or even make it worse. Guess it's just because we are all built differently and react to meds differently. So, continue to read, particularly the mayo clinic algorithm. The algorithm is a good roadmap for you and your doc. to follow in the event one type of med(s) do not work for you and you need to try something else. Sorry for all the additional diagnoses in your life. It's a lot to deal with I'm sure and probably just makes the rls issue that much more difficult to sort out and deal with. Glad you found us as in addition to finding lots of good information you will find lots of good people. Best wishes, n4.

M.

[domesticflowergirl]

I just joined last nite & also started taking Maripex last nite. Was very worried about the poss of horrible nitemares I almost didn't start. But...slept ALL nite w/ some very vivid dreams but NO nitemares at all. I am quite concerned about the exstremely HIGH cost of this medication but have absolutely NO choice. My grown children think I am making up this Disease but how would they know? So...I seldom talk to them about what I am going thru. I also have a Bone Disease in my back & my Dr. says that eventually i WILL be in a wheelchair. Maybe...then my children will believe I was NOT making up stories about my health. I have found more support, caring, understanding thru people & friends I have made On-Line. When I told them yesterday after my Dr.'s appt i have RLS...they just asked me if it was something I made-up.