I'm new and it's 2:00 AM

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.
patitodehule
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I'm new and it's 2:00 AM

Postby patitodehule » Tue Jul 10, 2007 9:27 am

Hi! My name is Bob. I’m a “kick-a-holic”. I’m new here, and just wanted to ask a question, but first an introduction and some background.

I’m a retired geek, 66, and live in Minneapolis.

Diagnosis
I was first “dx’ed” in Fall, 1968. It was late night in and ER. I had broken my ankle at a boy scout campout. I told the ER doctor “You should see the kid I kicked.” He said “I’m going to give you some Demerol to stop the pain and it should stop that ‘nocturnal myoclonus’ too.” (Nocturnal = night-time. Myoclonus = twitch.) Next morning my own doctor told me it was “kick-bottom” syndrome. He retired a year or two later and his successor told me it was Eckbom syndrome, not kick-bottom. He said that nowadays they call it Restless Leg Syndrome. Ach! “Nocturnal myoclonus,” “Ekbom” “RLS”. A skunk by any other name would smell the same. (Paraphrased from Romeo and Juliet.)

History
I’ve had this as long as I can remember. When I was a kid, I remember seeing my sister twitch while asleep and just thinking “Everyone does that.” By hindsight, she just had “sleep jerks” and she concurs with that assessment. But I’m quite sure my dad had it too. Anyway, I never gave it a whole lot of thought until that ER doctor gave it a name.

Symptoms
Actually, what bothers me most is the kicking. I’ve gathered that it’s a common symptom of RLS and called PLMD Periodic Leg Movement Disorder. Or “nocturnal myoclonus”. A skunk by any other name . . .

For me, it’s like this. I get this very uncomfortable sensation in my foot that moves quickly up my calf. I wouldn’t call it “creepy-crawly” but I guess you could. Usually it happens in only one leg (either leg) at a time, but occasionally both. If it stops with my ankle, I flex my ankle and extend my toes hard. That can give me cramps in my foot or even in my calf. If the sensation moves on up my calf, I flex my knee, and perhaps my hip. It’s like jerking my leg away from someone tickling my foot when I’m half asleep. If the sensation moves all the way up to my knee, I kick. Hard. If it happens in both legs at the same time, I kick hard enough to knock myself out of bed. Or to knock my wife out of bed. (I actually did that once).

She loves me… She loves me not… She…

These movements may vary, but they’re almost always stereotyped in the way I just described. I’d say they were involuntary, but they’re something that I do. I mean the urge is so strong that even if I resisted it, I’m sure my legs would jerk by themselves anyway. Know what I mean? It’s almost (a lot!) like a knee-jerk reflex.

This normally occurs only at night beginning about 20 minutes after I go to bed. It sometimes happen sitting a very long time like at a desk or on an airplane. I’m sure that on international flights I must drive the passenger in front of me bananas. When it happens, I get up and walk around for a few minutes (about 10 minutes?) and I’m good for another 20 of lying down. That’s usually long enough to go to sleep. If it wakes me up, I walk around again. If it gets really bothersome, I’ll take a codeine tablet. That brings me to

Medication
My doctor once was going to prescribe some anti-Parkinson drug, but I’d really rather not take drugs if I can cope without. I do occasionally take a Tylenol 3, and that helps. It puts me to sleep pretty fast. If it gets really bad, on rare occasions I take a Vicodin. My doctor is OK with that.

I see some comments about not taking Benedryl. I took one last year and didn’t notice any problems. That was occasioned when I took a swig of coffee and choked. There was a yellow jacket swimming in it. I got stung once or twice in the back of the throat, twice on the side of my tongue, once on the inside of my upper lip and twice on the outside of the lower lip. I took the Benedryl to make sure I could keep breathing. It didn’t kill me.

That’s my story, so if anyone’s borne with me this long:

My Question
Night before last I kicked with unusual enthusiasm. About 2:00 A.M. I woke my self up by flexing my knee so hard that it popped. In fact, whether it was the kick or my scream, it was enough to wake my wife up too. It hurt so bad I could hardly get out of bed. I walked—or hobbled—around for a while, and returned to bed. My knee had quit hurting, but it didn’t seem like I had even gotten back to sleep when I kicked again. That was at 3:50 AM. When I went back to bed, my knee kept throbbing, so I got back up and took a Vicodin. The newspaper was delivered, so I sat and read that until the Vicodin kicked in. Then I slept until it wore off. I have a doctor appointment in two weeks, but in the meanwhile I wonder if anyone else has had an experience like this where you kick hard enough to really hurt yourself? Any suggestions?

Thanks.

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ctravel12
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I'm new and it's 2:00 am

Postby ctravel12 » Tue Jul 10, 2007 5:01 pm

Hi Bob and welcome to this group. Really enjoyed reading your post.

I do not have the problem with flexing my knee that it pops. You said that you were going to see your dr in about two weeks. The forum that you are on now has one called "Managing RLS" and it has an excellent article from the Mayo clinic Algorithm. Please read it and if you are able to, print it out and bring it to you dr. It is very informative.

Another good site is www.rlshelp. org Please keep us posted on how you are doing and am sure other members will post to give you good advise.

Have a good day and let us know what the dr says too.

Reading alot of the old and new posts are good too as there is good information out there.
Charlene
Taking one day at a time

razorbackmatt72
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YES....OR SO I THINK

Postby razorbackmatt72 » Tue Jul 10, 2007 5:25 pm

Hey Bob. I have had RLS as well, all of my life. I"m 35 now, first memory of it was 5yrs old. Mine would switch from leg to leg, the hard hard kicking was something I just go used to. In 1999, I was working on a deck.....one simple movement and I tore cartilage and two ligaments in my knee. I never played football or any contact sports. When the doctor read my MRI, he wanted to know the last time I have played sports, I said never....he said that my joint looked like that of a football player or professional runner, very bad shape from years of abusive movement. I can only think it is from the hours and hours of hard kicking. My recovery from the surgery was murder, thank god for percoset and a very strong brace. I have had times since, that I would wake up in the morning with throbbing knew pain thanks to my old friends "kicky". I am currently on Mirapex .25mg per day and it is controlling my symptoms....I still have small twitches in my foot that do not develop into anything other than humor watching it move, and I hope that's all it does. Mirapex worked for me, I'm no doctor but it's worth inquiring with your doc about possible treatment with that and see how it goes. He gave me a starter pack that worked you up in dosage amounts over a two week period. GOOD LUCK BOB!

patitodehule
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Joined: Mon Jul 09, 2007 8:34 am
Location: Minneapolis

Postby patitodehule » Tue Jul 10, 2007 6:16 pm

Thanks Charlene And Razorback Matt. (You from AR? That's where my family's from (until 1938). I was born in CA.)

Charlene, I assume you mean the Mayo Clinic in Jacksonville? My daughter used to do research at Mayo in Rochester and she once brought me some literature from there.

Razorback Matt, you and I seem to be kindred spirits in some ways, at least. My earliest memory of thrashing in bed goes to when I was four. I fell out of bed and dislocated my shoulder. Because of that I never played contact sports or any game that involved throwing something. For two years I couldn't throw a ball overhand at all without my shoulder popping (until 3rd grade). Even then, kids always told me "You throw like a girl!" Most girls are better athletes than me, but you know how that would bother a first grade boy!!!

An MRI on my knee looks like you describe. I have osteoarthritis--the reason the kick on Saturday night hurt so bad. But I've always blamed that on my running. I used to try to run a marathon, but could never get over nine miles. I was running at least three miles/day back then and my doctor was amazed that I could do that "in the shape you're in." I took up skiing and swimming instead.

I had rotator cuff surgery on my shoulder last November. I know what you mean about the Percocet. The surgery was a mixed bag. My shoulder is weak, but the pain is less now. The pain was pretty bad until April, and even the physical therapy didn't help much. In April I went to CA and cleared an acre of brush and cut up some trees my sister had cut down. Without power tools. After all that sawing, my should bothered me in the morning when I got up, but I began to regain strength and it didn't bother me any more until I went to bed ('cause I lie on that side). So exercise helps.

I'm going to print off your post and show it to my doctor because it sounds so much like what I can say about my case. This doctor had never even heard of RLS until I complained about it. He turned around and looked at his computer and found a very good description of it.

Thanks, both of you. :P

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SquirmingSusan
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Postby SquirmingSusan » Tue Jul 10, 2007 8:11 pm

Hi Bob and welcome to the forum. I'm from the other side of the Mississippi, in an eastern suburb of St. Paul.

I'm also a kicker. Actually I have severe jerking all over my body while I'm awake. I can only imagine what it's like when I'm sleeping. :shock: And yes, I worry about hurting myself. I just posted in the non-pharmaceutical section that I'm going to start sleeping with wrist and ankle weights and see if that helps limit my range of motion when I kick.

Oy, yellow jackets. It's getting to be that time of year again. I can't imagine swallowing one. :o I always look before I drink when we're sitting outside. We have nests in the ground in our yard, and nests up under the eaves. Just about the time the weather gets halfway nice, those little beasties come out.

Well, you've found the right place for information and support for RLS. There is a lot of good information here. Like Charlene said, a good place to start is to find the link for the Mayo Clinic Algorithm. It's in the sticky post in this section of the forum. It's basically a treatment plan that outlines various types of treatments in the order that the doctors like to try them.

Good luck with it all!
Susan

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ctravel12
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I'm new and it's 2:00 am

Postby ctravel12 » Tue Jul 10, 2007 9:48 pm

Hi Bob and you are more than welcome. The Mayo Clinic Algorithm I was talking about is a sticky post "Managing RLS" and you can print out this form if you want to; however you may all other info that you need if you daughter brought some literature.

I live in Lake Havasu city, Arizona where it is beastly hot right now and we are starting to get our monsoons which will make it even hotter and sticky. Oh well, it could be worse. The main thing is to get yourself better.

I just reread your post and you said you can take vicodin. That is wonderful as that is one pill (has codeine) I cannot tolerate. I know what works for one may not always work for another Here is hoping that the dr can give you something that will work for you. Sometimes you have to take a cocktail of meds before you find the right one. I know that does not sound too encouraging, but when you do find the right one it makes a world of difference.

Good luck with you and please keep us posted. Sending good thoughts your way.
Charlene

Taking one day at a time

patitodehule
Posts: 6
Joined: Mon Jul 09, 2007 8:34 am
Location: Minneapolis

Postby patitodehule » Thu Jul 12, 2007 6:03 pm

Resolved for now
My doctor called this morning and told me to pick up a Requip starter kit and a scrip at his office and he'd discuss it at my appointment on July 24th (a post-op exam). As it stands, the scrip should last until my regular diabetes appt. in September.

The surgeon had already given me a scrip for Vicodin since I told him that's what I was using it for. Now I just need to hear that my biopsies are negative (and I'm expecting that).

Thanks, all

patitodehule
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Joined: Mon Jul 09, 2007 8:34 am
Location: Minneapolis

Postby patitodehule » Thu Jul 12, 2007 6:09 pm

Also...
He called it "Crazy Legs." I haven't heard it called that for a good many years.

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ctravel12
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I'm new and it's 2:00 AM

Postby ctravel12 » Thu Jul 12, 2007 7:31 pm

Hi Bob Thanks for keeping us updated on how you are doing. You had mention about biopsies being negative. I hope that it is nothing serious. I hope that you do not think that I am nosey (which I am good at LOL) but am really concern.

Please keep us posted and sending good thoughts your way today and everyday.
Charlene

Taking one day at a time

Rachel
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Location: Massillon, Ohio

Postby Rachel » Tue Jul 17, 2007 3:47 am

Hi Bob,

I am also a kicker and a left arm "shotput thrower". I've been known to sleep on hard wood floor just because I don't seem to kick as much.

I'm with you--the worst isn't the feeling of kicking. It's the actual kicking.

My doc has me on Mirapex which is slowly not working as much so he added Darvocet a few months ago. It's not the answer as far as the creepy crawly sensations although it does help stop the kicking during the afternoon and evening when the kicking starts.

If your doctor has any ideas about how to make the Darvocet last through the night so I don't wake up at 6:00 a.m. while twitching, I would appreciate it.

Thanks,
Rachel

lizbestill
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Postby lizbestill » Tue Jul 17, 2007 9:37 am

Hi, Bob, I enjoyed reading your post! I really understand what you mean about the sensations starting in one leg, I know it's going to be a bad night when it starts in my left leg, because it won't be long before they're both jumping. I don't try to kick my legs though, I curl up like in a fetal position. My husband woke up one morning and said I was curled up next to the headboard so tight with my knees all about my head. It was then he suggested I needed some medication. I was doing this in my sleep, so I had no idea it was that bad.

Last night was not good, my dr. wanted me to cut my Mirapex dose in half and take Rozerem so that I can start Lyrica tomorrow. The rozerem makes me sleep, but does nothing for my legs. So, I'm dozing off while I'm walking around the house waiting for my legs to settle. Tonight will be the same as this will be my last night on Mirapex.
Elizabeth

patitodehule
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Joined: Mon Jul 09, 2007 8:34 am
Location: Minneapolis

Hooked on Requip; Works for me.

Postby patitodehule » Tue Jul 17, 2007 5:00 pm

I never imagined how much relief I could get from drugs. I started with .25 mg Requip for 2 days and now .5 mg for 5 days. I'll start with the 1 mg pills on Friday.

On the first night, I felt the sensations and my feet and toes wiggled. Since then, I haven't kicked at all. But I have also gotten relief from foot and leg cramps as well as burning and aching soles of my feet that I had been blaming on the onset of diabetic neuropathy and from the ache in one ankle and both knees that I was blaming on arthritis.

It's true I still have arthritis in my hands and knees and a sore shoulder from recent rotator cuff surgery. And it didn't do anything for my lump that I'm getting biopsied, but I guess you can't have everything. :roll:

I'm ecstatic about this though. Why didn't I ask for something ten years ago.

BTW, my mother asked me about Requip a few months ago (she's 91 and having some RLS issues.) So I called her and told her how it's working out for me. She commented that she thought I'd know because I'd had RLS since I was a little guy.

!!!

I knew that; I didn't think she knew it.

ViewsAskew
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Postby ViewsAskew » Tue Jul 17, 2007 8:17 pm

patito, I'm not a doc, so take this for what it's worth.

You do NOT have to increase your dose of Requip if it's working. Dr Buchfurer and other RLS docs have said that less is more. Their advice to patients is to increase ONLY until symptoms are gone, then stay at that dose.

It's my belief that many docs do not know this, because they are given these sample kits and think that you are supposed to titrate to the top dose (it's even possible the literature from the drug company says that). But, many of us here and on other forums all know that each of us is different and not one dose correct for everyone.

Again, just my opinion.
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.

KBear
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Postby KBear » Wed Jul 18, 2007 1:46 pm

I agree with Ann (but I'm not a doctor either) you may be able to prevent (or at least delay) augmentation/rebound by staying with the lower dose as long as it works.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

jumpy
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Postby jumpy » Wed Jul 18, 2007 4:24 pm

I agree with Ann and Kathy...Stop at the lowest dose...you may need to increase later..My GP gives me 1mg split in 1/2 (.5) doses. That way you can take what you need. Sometimes the smaller dose is all I need. Experience has taught me you have to get the dr to prescribe the split dose because you can not cut the damn thing in two pieces yourself. Good luck and sweet dreams...Pat


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