Here We Go

[Sara]

Hi, Randy, and welcome!

I'm not the most knowledgeable person around here, and have known the name for about 3 or 4 years for the RLS symptoms that have been bothering me at least 20 years (I'm 39). I'm blessed to be able to live without medication for the time being, so I can't comment on that, either.

But, I did want to say that from your description of your symptoms-- but more important, the things that relieve them somewhat-- I would agree with your neurologist that RLS was likely.

You aren't the only person on this forum who has sensations in their thighs; I've heard others mention this. You may have noticed, some here even get it in their arms. For me, the symptoms and sensations are focussed in my feet, and seldom make it up above my ankles.

It's also not unusual for the "sensation" to be any of a number of strange, and largely indescribable -- but very uncomfortable and often distressing-- feelings. I do have more of a "classic" creepy-crawly feeling, but I also have something that feels something like my interpretation of your "extreme fatigue" feeling.

Not all of us kick violently-- my hubby has no bruises, though many spouses of people here do. I do have tired legs in the morning, though, so I may be moving throughout the night and not know it (no sleep study yet, and a husband who's a pretty heavy sleeper )

Oh, and like you, I've always thought that when I was asleep, my feet weren't bothering me. I'm blessed with symptoms that are worst when I sit or stand still, so walking around helps... and also lying down and going to sleep usually helps (I get worse RLS if I'm overtired or up late or ill with flu). But lately I've had periods of RLS 24/7, as well as what appears to be RLS waking me up between 3 and 5 am.

I think that RLS presents itself just a bit differently in each of us, but many of the overall symptoms seem to be consistent... timing of sensations, movement relieving sensations, fatigue and/or sleep problems, etc.

I hope that the Mirapex works well for you. Take good care.

Sara

[sthomp66]

Hi Randy: I'm 38 and have had RLS since I was about 10. I too never knew what it was and my family just thought I had "crazy legs". My sensations (or whatever you call the feeling) is mostly in my thighs and arms. As I've gotten older the RLS has gradually gotten worse. I too, think that everyones "feelings" are different and usually pretty dang hard to describe to anyone, especially those who don't have RLS. As far as the drugs, Mirapex did nothing for me. The drug that's worked for me for 10 years is Ultram/Tramadol. Some people however can't take it. I've found if you're allergic to codeine, you'll probably spend the night with your head in the toilet if you take Ultram. However, if you don't have a problem with codeine, it might help you too. It's truly saved my life and I'm sure my marriage. I know it's considered some form of pain medicine, even though what I feel isn't "pain". I also know it's not a heavy narcotic like vicaden, so your dr. shouldn't have a problem letting you try it. Unfortunately, I do think you have RLS. Most of us here aren't dr.'s but those of us that continually live through this can usually spot it in others pretty quickly. Hope you find relief soon.

Shelley

[ViewsAskew]

PLMS and PLMW (while awake) often accompany RLS. In fact, your RLS does not have to be bad to have severe PLMs. Your post interested me because I, and my whole family, are "thigh" people. When I first started reading about this, I thought something was wrong!!! We have 3 generations with it and ALL of us have the sensations in our thighs. Now I also get them in my arms.

Your doc sounds like he/she has a good start for you IMHO. The Mirapex may cause some initial side effects, but often these wear off. From my experience, I'd suggest taking the smallest amount possible at first and see what happens. When I was first on it, I was able to control the PLMs with 1/2 the dose the neuro wanted me to try.

Sorry you have this, but glad you got a diagnosis. It's half the battle to getting better in my opinion!

Ann

[Randy Mc Kee]

My sensations (or whatever you call the feeling) is mostly in my thighs and arms.

Thanks Sara, Shelley and Ann.

As I was reading the replies I noticed that Sara mentioned it and Shelley has the same sensations in her arms...which for the last couple years, so have I, although not nearly as often as in my legs and not as strong.

I'm on my third day of Mirapex, half dose, and tonight start taking the full dose. So far, and I know it's early...no relief. But we'll see.

I've been reading, on this board, with interest some of the non-pharmaceutical ways of dealing with RLS. Over the years, I've tried some of these... sleeping Indian Style and propping my legs up. I've also found some relief if I put a pillow on the floor and kneel next to the couch and sleep...but it's hard on the knees. The Dr. told me about the soap at the end of the bed thing. I guess it's worth a try although I'm pretty skeptical of "cures" like that.

Anyway...after all these years of telling Doctors I was having trouble with my legs, then having circulation tests and blood tests and x-rays...then being told nothing was wrong, I thought I was just an idiot...that it was all in my head or something. It's good to be getting something done about it...it's good just knowing I'm not an idiot and reading other people's thoughts.

Your replies have been very good to read and I welcome all of them and any more.

Thanks again everybody.
Happy New Year!
Randy

[sthomp66]

Hi Randy: I know how you feel about thinking you're crazy and people telling you it's all in your head. If it makes you feel any better, healthwise, I'm perfect. Heck, my iron isn't even low. But, that's doesn't take away the fact that my legs and arms drive me out of my mind. I have found my arms even more frustrating. With your legs, you can stand up, stretch or any of the other hundred crazy positions I put my body in to relieve my legs. The night my husband found me standing on my hands in the hallway, he thought it was time to purchase a straight jacket! I didn't give the Mirapex much of chance since the Ultram worked so well for me. You'll find your remedy, it just takes some experimentation. Happy New Year to you too! I have to say, this group has made me feel better too, it's a great relief to find people you know what you're going through after a lifetime of people who don't.

Shelley

[Rubyslipper]

I think one of the reasons RLS is so hard to diagnose and treat is that symptoms are different for all of us. The only common thread is that movement seems to help. As for what meds help most, again that is such an individual thing. I am on Mirapex, Neurontin and now Wellbutrin. The legs are calm but I still wake up many, many times during the night (that I'm aware of). So I may be going back to the doctor to see what else there is. Or I may just keep on this way. Who knows? But you do have to experiment with what works best for you. Learning and listening to what does and doesn't work for others does help. Becoming well-informed is the best option we have. Hang in there and keep us posted on your journey.

[jumpyowl]

You wrote:

I think one of the reasons RLS is so hard to diagnose and treat is that symptoms are different for all of us.

Not only that but we also react differently to the various drugs. Ruby, if I took Mirapex, Neurontin, and Wellbutrin, even at the same dose you do(and I am bigger than you ) I would be nuts.

However, you are not getting anything for pain (except Neurontin but that is only good for some specific neuralgia. Is pain waking you up?

I asked for Wellbutrin from my psychiatrist and you know what he said? "Since you are so highly strung, I am afraid to give you Wellbutrin."

Now he is giving me Remeron and that drug is not doing me much good, My body pain has increased possibly because of Remeron. I also have some narcolepsy which is caused by Mirapex at just about the dose level I am taking it(3 x 0.5 mg).

It is not good that you wake up so many times. I can almost bet that your restorative sleep is almost nonexistent, but a sleep study should confirm or eliminate this suspicion.

Sorry Randy for seemingly veering away from your problem. But posting this I hope I can give you example how this forum does more than just provide camaraderie. By comparing notes and sharing our experiences eventually we will understand our affliction better than our doctors ever could.

[ViewsAskew]

Well said, Jumpy. The symptoms are incredibly varied, but not nearly as varied as our responses! Unlike you, Jumpy, low doses of Mirapex make me sooooo sleepy, but higher ones give me incredible insomnia. I awake several times through the night and my mind is racing and I can't sleep. It has no daytime effect at all! No matter what the med we talk about, or the combination, it doesn't work the same for any of us.

Even iron is not a sure thing. Increasing ferritin levels does help many people, but it does not eliminate RLS for many, and for some it does nothing at all. Some of you drink caffiene and are OK. I'd have to shoot myself if I did that.

Exercise in moderation seems to work for many. Doing too much too quickly usually causes problems, but regular workouts often help. Time of day varies and the type varies as to how helpful.

But there are no absolutes in this!

Ann (who cannot sleep and has a plane to catch in the early mornin .)

[Rubyslipper]

Jumpy I have had two sleep studies that got me no-where. The doctor who followed up on them wasn't interested in RLS at all (even though he was supposed to be an expert!) and told me I needed to lose weight and come back in 6 months. The pain is worse lately but thinking back, it has been there off and on for a couple of years. I agree that I am not getting any restorative sleep. The legs don't bother me much that I'm aware of but I wake up too many times at night. The meds I am on now don't seem to bother me during the day and do take the RLS symptoms away at night. So I really don't know what to do. There are no neurologists close by or any doctors from the RLS list. So I just go on.

[becat]

How do we all do it.
I'm catching up on the reading and responding, took much of the holiday off it seems. This is a great Thread ya'll>
Randy, I can see myself in your story, as many other stories from others here. I must say that you have gotten responses from some the best people here. Each one of them is caring and giving. You got questions or ideas, post away. Jumpy is right, it's they way we learn here. You hit the support Jackpot with those ahead of me.
None of us are crazy, I betting your not either, nor our miss Sthomp66.
What's amazing to me is how small the medical community sees RLS. As you can see each of us has slight differences in how we feel and explain it. It takes that many different kinds of treatment for RLS. Each one being one of our own. I do think, that it is in combinations, that we find a sense of relief. Mine is medication for pain and sleep aid late in the day.. Not taken at the same time. The pain medication comes first and early for me. I can make it through most days managing my symptoms in non-pharms ways, now. But in the evening, long trips.....(View how do you do it?) and at night, I can't manage it by myself. Sleeping? forget it, my body forgot how to do that right.
So I used medication. There are many others that do not. Everyone has to make their own mind up about treatment. We just push a good RLS education here, and a ton of support. You never know who you'll effect when you share here.
Where Jan, You'll meet her too. Kinda the MOM around here. LOL Love ya. Ruby, what did ya tell the docs? LOL I bet that wasn't pretty. Seriously, honey you need some sleep. Why is a sleeping pill a bad idea? Am I the only one that takes one?
Ok, I'll stop.
Love to you all
We're always sorry someone has to find us, but we always glad your here. Welcome.

[jan3213]

It's Jan

Sorry, I've been remiss in my welcoming duties!!! hahaha

Anyway, I want to add my very warm welcome to this Board! I'm so glad you have found us, but sorry you have RLS!!!

As you have already seen, we have some really great people here!!! Becat is right, you have already met some of the BEST people on this board. However, Becat failed to include hereself!!!

Randy, I take meds too. Don't know how I would ever survive without them!!! But, everyone IS different and you choose your own path!! I'm on Mirapex and it has worked well for me for at least five years. However, it doesn't work for eveyrone!

I have RLS in my legs and arms, and, sometimes, even with meds, I can't even sit still through a movie at a theater!!! I don't sleep well, and NEVER get restorative sleep!! BTW, YOU ARE NOT CRAZY!!! We understand here, believe me!!! And, we all know about doctors!! Some are good, some not so good. Some listen to you, some don't. You just have to search until you find the right one to HIRE!!

Hang in there. Believe it or not, you CAN live with RLS. Although, it can, and occasionally DOES, still drive ME crazy. Once again, I'm so sorry you have RLS. But we're a family here, and you have found a HOME!!!

Jan

[Rubyslipper]

Randy, even if you do decide to take meds like some of us, sometimes what has been working doesn't. I don't mean to be a downer but I do need to be realistic. My meds have been working fine as I stated in an earlier post. Last night they didn't. I am keeping a sleep diary but I honestly can't find anything in yesterday to cause the misery I suffered last night. Luckily I didn't have to work today. The weather has changed so maybe that had something to do with it. At any rate, it was a long and miserable night. I do recommend that you check to see if there are any triggers on your RLS. Caffeine, sugar, alcohol are some that effect some of us. Stress can't be discounted. I also have had a tough time today with being very achy and hurting. I do have a doctor's appt next week with a new doctor just on the off-chance that he can tell me something new. Becat, what sleeping pill do you take? Anything across the counter just sets me off. Do you take one every night? Let me know so I can discuss it with the doc. In the meantime, Randy and anyone else; this board is the best thing that has happened to me in a long time. Who I have met and come to love and what I learn here as well as the support on the bad days (nights?) is just incredible. Stay with us.

[becat]

Hello My sweet Rubyslippers,
This will be my second try at answering you, the site likes to blink these days for me.
Anyway, Oz is a wonderful place, just not always a nice place. I'm sorry to hear about your pain, but darn glad you got the day off.
Yes, I take Ambein, 10 mg.. I'm allowed to take it every night, but try not to. I'm careful not to mix it and the small amount of Percodan too close.
This is the deal. Most of you know, but for those that don't.
I really did not sleep for the most part of 8 years longer than 1-2 hours at a time. My body hated me and didn't mind showing it. I honestly did not think that I would live another 5 years. That's hard to admit, but I feel like my body and mind were slowly being eaten away. How could I survive? It makes me cry to think just how hopeless I was. Not that I was giving up, just that I felt my body would for sure. I knew that by last year I was becoming a physical and emotional wreck, but what can you really do about it. I was allowed for many years to have sleep medication for travel only. We did travel so often. Business trips, hubby's family on the east coast, my family in three states. I never could sleep at home, but could at least find things to do during that time. I couldn not freely roam other people's houses. I've made the joke before, I'm from a southern family, most own guns, you just don't roam. LOL
Kidding aside, hotel rooms are the worst for me. There is no escape when sharing a hotel room. It got to the point good or bad, travel meant sleep. I'm not a good traveler, it's painfull for me.
Last year before I found my home here, I lost it in my doctors office. I was a crying mess, my huband sitting near by, the Doc watching me, I broke. i just wanted to sleep. I needed rest. I hate to admit it openly, but I have a true distaste for asking for help. I do, I should be able to do this natural thing on my own. It's sleep for gosh sake. But I could not take it any longer. Hubby agreed and we, sorta, demanded something to help with that.
I know it's not the best choice. And trust me I hope it's not a forever thing. BUT for now it's a great option for me. I find that having gained a bit more control over the RLS, I don't have to every night, but I can. It frees up the panic feeling I get when I know I have things to do the next day.
No, it doesn't not always work at it's best or maxium rate. I hate bed less, it doesn't always mean a war zone for me. I have concerns about the long term use, like I do any medication. Since the summer of 2004 I have slept more than the 5 years before it. I'm better with the medication and some sleep, than I would ever be without. Yes, it's a risk, I guess. It was a bigger risk without it (sleep) for me.
Dang, I spent years hidding all of this from everyone, I thought at least. I'm always amazed at how honest I end up here.
OOOOOO OTC sleep stuff just works wrong on me. I stay wide awake on that stuff.
My hugs and love to all.

[Rubyslipper]

Becat, thanks for being so honest. There are times that all I want to do is cry (now being one of them) but I have to be the strong one here. My husband has his own troubles and frankly I have spoiled him rotten. He is concerned but mostly ignores it as long as I keep going. I don't tell him much and that's my own fault. That hopeless, how can I get up tomorrow feeling is with me too much. This has just been a bad day although I have enjoyed not doing anything. I have rested well and am ready to go back to work tomorrow. This isn't really the place to go into this, this thread started out as something else. I just hate this desperate feeling. Sometimes I think it's not only knowing you can't sleep and that you HAVE to sleep because tomorrow depends on it. Sometimes I wonder if this hopeless feeling isn't a symptom of RLS just like the urge to move. Depression goes along with this not only because of lack of sleep but as a direct link to RLS. Who knows? That's why this board is so important. We need each other and we need to figure out what the #%!* is going on with our bodies. So we hang in there, take turns rowing and stir some hope!

[becat]

Randy, my dear, Do you mind that your thread has come to you in this way? Maybe, I hope not. This is what this whole place is about. My guess is that Randy is learning tons with his post here. Not only about how the rest of us live, but about how willing we are to step up and support one another.
Randy, I'll tell you, this woman, Rubyslippers, gave me my wings here. Her loving care and concern made me go to great lenghts to be a better person living with RLS. She's held tight to the belief that things can be different for all of us. She supported me when I decided to try to make a difference. She smiles in a way that you know that her heart is golden.
Ruby, you above us all should know by now that we will row for you anytime. Your right some days it feels hopeless........You know I have been there, rowing in a circle. Crying just happens somedays, sometimes it's the stories here that remind us what tears can DO FOR US.
When you stand in front of your group as a leader, they will be a lucky group. Your group will have someone that make the journey with them. A leader that understands the time and trouble involved in finding the right treatment. The support needed to make it. The knowledge of living with RLS successfully. And you will live that.
Part of my education this year, was to educate those that love me. Live with me. It was not easy, ha , is not easy, but it's happening. Your worthy of the best life has got to offer and we'll stand for nothing less for you. Nothing less for anyone of us. One step at a time and you better believe, I'd row for you everyday and twice on Thursdays.
Randy, you truely have gotten such a great response from this group. Look what your post did already. This is what this family is all about. We learn together and make a seriously big shoulder for all to hang on...or hug.
Hugs to you my Ruby, I got two oars at the ready and a spare in case I drop one.