Hello From Scarlett

[Scarlett46]

Hello –
I’ve been lurking for a few weeks now. Reading posts that sound so much like my story. So pardon, if this sounds all too familiar.

Looking back, I think I’ve probably had RLS all my life. When I was a kid, I had what my mom describes as terrible growing pains. When I was in high school (and experiencing puberty), my legs would ache unbearably during TOM, or if I let myself get over-tired. I ran track in high school too. I would wake up screaming in the middle of the night with wrenching Charlie horses in my calf muscles. And after a long practice, I would feel like I was getting shorter and shorter – like my feet were sinking into quicksand – my legs would be so heavy that I didn’t feel like I could stand up straight. After I had my daughter I began noticing what I have since called “Jumpy Legs”. Again, when I allow myself to get over-tired, when sitting still for a long time (in a theater, in a car), especially with a kid on my lap, my legs would ache, and just feel like they had to move. Stretching my legs and lower back seem to help, but only very temporarily. I am not limber enough to stretch like my legs feel like they want to! My toes, at the very least, are always moving. Like I’m tapping my toes to an inaudible music beat. It doesn’t matter how nice I’m dressed – I can be wearing a business suit in a staff meeting, and I’ll have one shoe off, and sitting on that foot (of course, constantly switching feet). I often sit “Indian Style” in my desk chair, bent over, stretching both my legs and lower back. Not very professional, I know!

I had no idea that there was actually a NAME for my Jumpy Legs problem! A few years ago, a lady I worked with told me that she had RLS, and explained what it was. I was like O M G! That is exactly like my Jumpy Legs! You mean there’s a name for it? And it’s real? Then I saw a commercial on TV… I was yelling at my husband from the living room to come look – they are talking about my Jumpy Legs, and there’s a name for it, and medicine for it, and everything! But the side effects they list in the commercial were too freaky, so I decided that it wasn’t worth doing anything about it. Mine probably wasn’t nearly as bad as others experience, anyway…

I have never really had any trouble sleeping, either. If “allowed”, I could probably sleep anywhere, anytime, for any length of time. However, I have been a sleep talker since I was able to talk. I’ve only been a sleepwalker – probably less than 5 times in my life. I will have a complete back and forth conversation in my sleep and not remember a bit of it when I’m awake. But I also do and say some very crazy, odd things in my sleep. From cussing like a sailor, to pointing at “those guys fighting, right over there!”, to swinging and punching the air yelling “Zap!” and “Pow!” like in the old Batman series.

Well… for the past several months, I have been having a very hard time staying awake during the day. Like head-bobbing at my desk at 3:00 in the afternoon! Just tired all the time. So I finally decided that it was time to discuss things with my doctor (The thing is, until you read something like multiple posts on a forum from people with the same problem, you never realize that it could all be related! I wouldn’t go to the doctor and tell him the life story of my legs, because I fall asleep at work in the afternoons! Unless he asks all the right questions, I can see how it goes undiagnosed so often). His first course of action was to do a blood work up. All came back “normal” (including my cholesterol, which I lowered from 203 to 160 in less than a year! But that’s a different story…). Next – a sleep study. Called to schedule it, called my insurance to find out the out of pocket cost, and promptly cancelled the sleep study. EESH!!! So, back to the doctor I went, but this time I was armed with a completed questionnaire from the sleep study lab. I knew there was a name for my Jumpy Legs, but I had no idea that it was considered a sleep disorder! So I discussed it with my doc… who still really, really wants me to do the sleep study. He’s given me a 20 day supply of sample Mirapex – incremental dosage. It’s only been about 8 days. I would like to say that it’s helping some… but I really can’t say for sure yet. I’m still tired in the afternoon… but my husband says that I seem to be sleeping better lately. I guess I’ll give it another 12 days and see how it goes…

I am still a runner… Well, OK… I’m a runner AGAIN! After 15-20 odd years… I haven’t experienced the Charlie horses, or the sinking legs feeling lately. I don’t really know if/how that’s related or not. But I try to do yoga every morning, and I feel like that helps some. And I am sure to stretch a lot before and after each run. Sometimes even a few hours after the run, I will get down on the floor and do some extra stretches.

Anyway… that’s a book I’ve written! Dang! Any non-pharm suggestions would be greatly appreciated! I hate taking drugs unless I absolutely have to (it’s bad enough the stuff I have to take for migraines). And I have crappy insurance too, so whatever I can do at home to help is what I’m trying first.

Thanks in advance for your help and suggestions!

[ViewsAskew]

Hi Scarlett - wish you didn't need to be here, but glad you found us.

Per the Mirapex. PLEASE consider not doing what the starter pack says. Many people with PLMD - the kicking at night that's keeping you from being rested - can get resolution with a very small dose. The problem with treating it is that you don't know when enough is enough. No one knows if this is true, but augmentation (medication makes RLS and PLMD worse) may occur when the doses are higher than needed. So, best to take the least amout necessary. Problem with PLMD is to figure that out.

For me, .125 of Mirapex takes care of the PLMs. Now, that's me. Some people can take less than that. Some need more. The starter packets were created for the average patient...but with any average there are plenty of people that need less. And some who need more.

I wish I knew the answer as how to tell what's the right amount. Maybe have hubby watch you. I never felt this huge difference - I felt better incrementally, but not so that I could tell what was working and how.

Per the non-pharm, there are tons of posts in that section - I hate to say this, but start reading . There isn't anything that helps more than anything else and there isn't anything that works for all of us. For example, for me lotion is one of the biggest helps - itchy skin triggers the RLS. But that doesn't help most people. So, it's trial and error.

You said there was a complete blood work up - did that include ferritin? That's the most important thing here. If it did, find out what the level was. It might be within range for the non-RLS population, but if you have RLS it should be at least 50 and some docs say closer to 100 is better.

Well, happy reading! Hope you find some tips that help and that you're soon getting a great night's sleep.

Oh, one last thing. Please read the sticky posts first thing. In this section, there is one on managing your RLS - lots of important info there. The stickie with links in it may also help you find info. And, the pharma sticky explains augmentation. Anyone taking Mirapex, Requip, or Sinemet should read that ASAP.

Now we both wrote a novel

[SquirmingSusan]

Hi Scarlett and welcome to the forum. One thing to know is that a sleep study cannot diagnose RLS, which is an "awake" disorder. The doctor diagnoses RLS from your description of the symptoms. A sleep study CAN diagnose sleep apnea or PLMD. But then again, someone who watches you sleep or sleeps in the same bed can "diagnose" PLM. That's the kicking that you do in your sleep. PLM can cause poor quality of sleep because you kick yourself awake.

As Ann said, Mirapex can be quite effective for the PLM, and in very small doses. I totally agree with what she said about taking the smallest dose possible to control the symptoms. If half of the starter dose works, then stay at that dose. If it doesn't, increase to where it controls the symptoms, but not beyond that just because the starter pack says to.

Best wishes with it all.

[jumpy]

Hello Scarlet, Susan's right about the sleep study..But I think RLS is listed as a sleep disorder on the questionnaire you fill out. Sounds like you have both RLS and PLM. Ask your hubby if you kick at night. Mind didn't want to tell me because he didn't want to complain...go figure...You can find my experience with a sleep study on another thread. It was unreal.

I think it's funny that you call it "jumpy legs" as that has always been my name for it. Had it since a child and was also a sleep walker. Wonder if there is any connection?

I control mine with Requip and Lortab and I know you don't want to go that route. But I'm 61 and tired of trying everything.

Lots of luck, Pat AKA Jumpy

[Polar Bear]

Hi Scarlet, you could be writing my story. I've had this condition for over 30 years and it is now 24/7. I sit on my legs the same as you do, not a pretty sight at nearly 60 yrs old!! I stand at my desk sometimes in work. I feel my head nodding at 3pm. However I do not have pLMD.
I have tried all the non pharm stuff, and now take medications, requip, a little codeine and a sleeping pill, and they have improved my lifestyle considerably. I still have symptoms, but I also get some sleep and relief. I could probably get more relief but do not want to increase the medications. The day will probably come when I have no choice but to increase the meds.

I am not saying that medication is the road to take, but it is my road.

Good luck.

[ctravel12]

Hi Scarlet and welcome to this site. I am so sorry for what you are going through. I have a mild form of PLMD but have had rls for 20 plus years.

I was first put on requip and did not agree with me and now I am on mirapex and clonazepam. It does help but still have bouts with the rls.

Have you ever had your ferritin level checked (iron deficiency)? When you go go for b/w you have to request that as it is not included in the normal b/w.

You received some good advise ;however please educate yourself as much as you can on rls and plmd.

On this forum please read the sticky post "Managing RLS" as there is an excellent article from the Mayo Clinic Algorithm. Please read it and print it out and bring it to your dr.

Please keep us posted on how you are doing.

[Scarlett46]

OK... let's see if I can remember enough to reply to everyone...

I have already moved to the second phase of the Mirapex starter pack... But now I've finished that one and am looking at another starter pack. Should I go back to the lower dose, after doing 5 days at the higher dose? Hmmm...

Hubby does say that I sometimes (but rarely) kick him in my sleep. Nothing regular though. But I do sit up and talk out loud in my sleep.

Does anyone notice that RLS doesn't show up when you're busy? I know that one of the "remedies" is to keep your mind busy, so I guess I shouldn't be surprised. My best days are when I've got lots to do. My absolute worst are when I'm looking for things to keep myself busy.

I guess my bloodwork probably didn't include ferritin, since I didn't know to ask about it. I'll have to ask the doctor about that the next time I see him.

I have been reading all over this site whenever I have the time! I'm glad I found y'all! Thanks so much for your responses!

[Polar Bear]

Absolutely, when busy there is no rls, cos its a movement disorder and movement relieves it.

[Scarlett46]

Well...
It looks like I'll be sleep deprived, cranky, depressed for a while longer...

I see the doctor again today after work. But I can't afford to continue. The doctor, lab, chiropractor bills just keep coming. Insurance of course, is still paying nothing because my deductible is not yet met, so we owe for it all. It's just freaking pissing me off. I'm just telling the doctor that I will have to revisit the issue at another time - because I truly cannot afford it right now.

Seriously, I have finally found the nerve to talk to a doctor about this… and now I can’t afford to continue the discussion or treatment. I guess I’ll start to work on the non-pharm remedies, which is what I wanted to do anyway. Mainly, I’ve got to find a way to keep busy, I guess.

So...
Money is obviously stressing me out.
Work (or the lack of it) is stressing me out.
My health is stressing me out.
Ugh... everything is stressing me out.

And is it even worth telling my doctor anything about my (lack of) progress? Maybe it's all just the power of suggestion - being in the forefront of my mind anyway... Maybe it's just boredom! My legs have been way more jumpy since I've seen the doctor last. And it's during the day, while I'm at work, and bored. Hubby says I seem to have been sleeping better - but I am still fighting sleep at work. And I'm still keeping him up at night with my moaning and some snoring. I'm having a harder time getting out of bed in the mornings too.

So now I'm just going to quit caring about it and maybe it will go away on its own because I'm not thinking about it. Pffssshhh right...

I apologize. I’m really not usually this negative at all. I’m the sunny “everything will eventually turn out ok” person! But if I don’t drag myself out of this hole soon, I don’t know if I’ll ever get that back.

Just… UGH!!!

[SquirmingSusan]

Hi Scarlett, yes, you do sound very depressed. We all know that it is so difficult to keep pushing ahead when we're sleep deprived and miserable, but that's what we need to do.

Please keep working with your doctor on getting some treatment. Yes, Mirapex is expensive, but there are other treatments that are not. Requip is available in generic form now so that may be an option. And there are other classes of medication, such as the opioids or benzodiazepines which are quite cheap.

And there are other things to try that won't cost much at all. Try eating iron-fortified cereal. Some people get relief from simple things like that. Try cutting out caffeine or alcohol and other things that aggravate RLS, like ice cream.

You can get relief from this, but not if you quit trying.

[ctravel12]

Hi Scarlett I am so sorry for what you are going thorugh. Sleep deprived is a miserable thing to have as we have all been down that road. I cannot blame you for being stressed; however stress is one major factor that can definitely trigger rls.

Please never apologize for posting anything that you say. We learn from each other. Whenever you want to talk, vent, scream or even cry we are here for you.

Please keep us posted on how you are doing as we really do care.

You know we chat every Monday night at 6pm arizona time and also have the voice chat on Thursday night. So if you are able top make one of them or both, we would love to have you.

You take care of yourself and will keep you in my prayers that thngs do get better for you.

[ViewsAskew]

When you're in that hole, it can sure look like there is no way out. You mentioned you are normally a rose0colored glasses girl...if so and you don't find your way out of this hole relatively quickly, consider that you truly may be depressed. Your life has changed and your worried about many things. It wouldn't be at all odd for this to have changed your normally sunny outlook for awhile.

Depression is an OK thing. But, do monitor it. If it continues for many months, let your doctor know.

In the meantime, as Susan said, there are options. Requip works extremely well for many and is much less expensive. But, maybe you don't need it yet.

A better option maybe to use Sinemet up to 3 times a week, maybe 4 (but not more) just on the nights you really need to be quiet and get some sleep. Spend the other nights working on the non-pharm methods that Susan mentioned. Read through the sticky posts, both in this section and the non-pharm one.

Between those two, you'd probably be able to not concentrate on the legs so much when you already have so many things on your plate.

Oh, and call those doctors offices and tell them you're working on a payment plan. Pay them a dollar or two a month if you have to. As long as you are paying something, they should work with you no problem. When finances are better, you can pay more.

[ViewsAskew]

Oh, forgot one other thing. You might want to tell your doctor that you don't have insurance that is paying until you get to a specific copay. He or she might be willing to charge you less. I wasn't in your exact situation; my insurance no longer covered my doctor and the doctor it did cover wouldn't treat the RLS. So, I had to pay out of pocket when I was paying almost $400 a month for insurance. I told my doc. He always charges me the lowest amount he can.

[Scarlett46]

I do feel a bit better after seeing the doctor. He told me to discontinue the Mirapex, and wrote a prescription for Klonopin. He says that I don't really need to "come back in" in a few weeks, just call and let him know how this new med is working. At that point, if it's still not, it will be time to figure out how to get me into a sleep study. He's got a note on my chart to "get a better deal" on the sleep study. We'll see how that goes.

Since Hubby is the one who does the bills, he is the one who stresses and complains about all the stuff the insurance isn't paying. I know he's not necessarily "blaming" me, but it makes me feel bad, because it's me who is causing them.

So... it's turned into a better evening. We'll see how this new stuff works... and how much it costs...

Thanks so much for the support! It is truly appreciated.

[ViewsAskew]

Scarlett, take this with the perspective with which it is offered: that of someone who's a bit paranoid about Klonopin. It does help some people. It often knocks us out regardless, so we don't notice anyway, lol. But, it's not without risks (not of our meds are).

Please be careful about using it daily without first reviewing the potential difficulties with addiction and tolerance. I can't speak to the addiction part, but can to the tolerance. I didn't read up about it very much when I started it. 7 months later when I stopped, I went through a very difficult withdrawal. It took me about 7 more months to completely stop it; I was so sick I lost about 35 pounds during the process.

Now, at least 50 percent of people have NO problems at all stopping this drug. The other 50 percent has slight difficulty to great difficulty. I had great difficulty. But, others here have stopped without a hitch. My point is not to scare you to death, but to simply say what I wish someone has said to me: know what it CAN do, see if there is a strategy that will minimize potential problems, and then make an informed choice.

I am in no way saying not to take it. Just know what the risks are, discuss with your doc, your hubby, whatever, and then do what you think is best for you.

One way to greatly reduce any potential problems with it is to:
-never leave your home or drive (or walk alone) after taking it (seniors have broken bones because they fall - like being drunk - when they get up in the middle of the night when taking this)
-make sure you "test" it the first few times when you don't have to get up at a certain time or be anywhere the next morning (some people are very sensitive to it and are "knocked" out for part of the next day, too). It may not cause ANY of this with you, but better safe than sorry and all that
-consider not taking it every night; take it 3 or 4 days a week only
-if you need it every night, consider taking a "vacation" from it every month for about two weeks
-don't drink with it!

Another option is to ask your doctor for a different benzodiazepine (this is the class of drug this is in). Klonopin has a very long half life (like up to 30-40 hours), which is why some people feel drugged the next day. But, other drugs in the same class can work just as well, without that drugged feeling. All of them have the tolerance and addiction concerns, though. I think that the one Dr Buchfurer has sometimes suggested instead is temazepam (Restoril). His site, www.rlshelp.org, says the following:

Klonopin/ Rivotril (Clonazepam)

Klonopin comes in 0.5 mg, 1 mg, and 2 mg tablets. The usual dose range is 0.5 to 2 mg. This was the first drug used for RLS and PLMD. This is due to its previous use in myoclonic seizures. PLMD used to be called nocturnal myoclonus and thus this drug was tried for RLS/PLMD with great success.

The drug has a rapid onset of action (less than 30 min) but it has a very long half-life (30-40 hours) causing a duration of action of 8-12 hours or longer. Daytime sleepiness can be a problem in a large percentage of patients on Klonopin. We therefore do not recommend this drug for most patients with RLS. It is, however, very commonly prescribed for RLS due to its early association with the treatment of RLS. It may work well in patients who do have morning RLS and do not get drowsy or sleepy due to the long lasting nature of this drug (which may persist at high levels in the morning causing daytime sleepiness).

Many physicians prescribe Klonopin, as this is the original drug used for RLS and is recommended by all the general medical textbooks that discuss RLS. Some sleep specialists (and patients) prefer to use this drug for RLS, but our experience has been that the shorter acting sedatives work better for most RLS sufferers.