Augmentation is Overrated!

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cmoore1958
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Location: Texas

Augmentation is Overrated!

Post by cmoore1958 »

Okay, so I pride myself in being able to handle pain. But, last night, my Wimp-O-Meter pegged out and went off the charts. Augmentation and switching meds is one of the hardest things I've ever gone through.

My doctor doesn't understand rls as well as he needs to to be able to treat me effectively at this point . . . but out of the necessity of the moment I am bringing him along nicely. I was able to convinve him of the need to get off of Mirapex. Effective Monday I am off of Mirapex and on Requip. I don't kid myself that this will be a permanent switch as my rls has gotten steadily worse. But at this piont it is baby steps.

I have had a total of 6 hours sleep the past two nights. I walk, massage, flex my legs, stretch my legs, and just want to scream 'cause I can't get it to stop. After a rough night my rls/plmd calmed down a bit about 4:30 am. And here is is 6:13 am and it's starting again.

I have the painful rls and it totally sucks! Even though I know my doc isn't in his office at 2:00 am, he received a message from me to call me in some sleeping pills and stronger pain meds.

I can't sit at my desk too long because my legs will start kicking. I walk around a lot at work and don't know if my boss has noticed or not. He is sympathetic but I work in accounting and need to be at my best as much as possible. I don't see my best showing up for a while now. My bed looks like someone came in in the middle of the night and ripped all the covers out from under tha mattress and just piled them on the bed. I fell asleep in the shower -- that could have been bad news. I couldn't sleep so I came to work early. Now that I'm here I can't seem to keep my eyes open.

I'm switching from Mirapex to Requip. Which means stopping the Mirapex and beginning the starter pack for Requip. Problem with that is I had some marginal relief from the mirapex, but since requip is a gradually built up drug over two weeks it feels like in effect I am taking no medicine right now at all for my rls/plms. This is just so rough on me, as I'm sure it was on those of you who have gone through withdrawal of a med.

At this moment I can't figure out just how I'm going to make it through this. The pain and discomfort is overwelming. I want to scream, cry and throw things. My legs are wrapped in a small lap-style fleece blanket. I have a portable ceramic heater under my desk and that is on high. I've been trying all morning to come up with something positive to say and try to refocus on that. Well, the only thing I can come up with is that my fibro is hardly noticeable right now and it was active when this Wimp-Creator process started.

I hope this doesn't last the full 2 weeks of the build up of requip in my system. Today is already going to be a long day and I'm not up for that today. I wish I could just say "not today, another time, thank you" -- like when a cure is found and then I can just get a booster of sorts and be done with this horrid disease.

I'm standing at my desk and leaning over it while I type this post. And you know what, even with the constant moving of my legs and standing and flexing muscles and stomping and kicking, etc. my legs won't settle down any at all. Usually walking or something helps. Not any more or at least not right now. When I step on a leg the pain that goes from the sole of my feet to the hips is amazingly strong. I never new it could feel like this and hope I never feel it again when this is over. It will end, right? Then, I also worry that there is some permanent damage and I will have worse rls in the future because of the augmenting. I'm not painting myself a very pretty picture with the only colors available to me right now -- black and white.

I appreciate ya'll listening to me. Thanks for all of your support that I have already received and fot eh advice I am now requesting from all of you, my family.

Love and hugs,
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

jan3213
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Post by jan3213 »

Cyndi

I have no words of wisdom....just want you to know I'll be thinking of you. Wish I could help!

Hugs
Jan
No one is alone who had friends.

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

Hi Jan,

Thanks for your good thoughts. I know there's not much that can be done for me right now, I just needed to vent a little and get it out there.

Thanks again for your support. You are a great friend and I love you for that.

Hugs,
Cyn
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

maxietobias
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Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Post by maxietobias »

Cyndi--I'm so sorry you are in so much pain. My Mirapex is not working this morning and I've been up most of the night with RLS in my arms and legs. Have you tried Vicodin? My doctor allows me to use it carefully and sometimes it works!!
Some people become very sleepy when taking this drug but it wakes me up!! Hope the Requip kicks in soon. Ruth


PS I am standing up to type.

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

Ruth,

Thank you for the kind words. Yes, I did take a vicodin and also tried my 100 mg darvocet. Nothing worked complete. I think I got my hour or so sleep a couple of hours after I took the vicodin. I still need something stronger than that, though.

I used to be able to stand at the kitchen counter and work on my laptop to pass the time. But, now my legs even jump when I'm standing up on them- and even when I walk. It totally sucks. I've never had anything like this before where nothing, absolutely nothing provides relief.

I've got a call into my doctor (which I made at 2 am) telling him I need something to help me cope with this until the requip kicks in. Hopefully I'll hear from him soon.

Thanks again for your concern and empathy. It means a lot.

Hugs,
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

Sojourner
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Location: USA

Post by Sojourner »

C, Don't think you're a wimp but a very brave, courageous rls sufferer. I'm happy you are the former but sorry you are the latter. I also wonder whether there is something that might be prescribed to help you through the withdrawal. Of course Vicodin is the first thing that comes to mind. Don't remember from your other posts whether that is an option but... You will be in my thoughts and prayers and I hope you will soon be feeling better. Best wishes, my friend.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Polar Bear
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Post by Polar Bear »

Indeed you are brave, many people would not make it into work in your present condition.

Betty
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

moonlight
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Post by moonlight »

Oh Cyndi
You are in so much pain I wish I could take it away from you, I have no answeres, maybe a little excersize might give you some relief.
I hope your dr can give you something to get you through the rough time you are having.
Thinking about you

huggles
moonlight xx
sleep is not only a dream

becat
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Post by becat »

Hi Miss Cyndi,

(((((((((HUgS))))))))))) to you, tight ones that make the pain go away!

You know I like what your doing at work (the throw blanket and the heater), but had a thought for you.

It may be more helpful and provide a little relief if you change to a heating pad to sit on. It's not suggested on the warning label, but that is how I can sit at my computer.

I find the right level of heat and it does help me to remain sitted for a bit longer than I normally would.

I still think the blanket might be good, pressure wise, but maybe a heating pad in your chair might help a bit.
Never go to sleep with on on, find one that has a timer on it. The burns they can give you are awful. No never found the timer, per say, but mine all have a timed thing that turns then off.

I am hoping the meds (the new ones) help quickly and you find some comfort soon my dear.

Wish I could do more. But I'll fill the moon for it to shine on you and give you some peace.

Hugs Lynne

ViewsAskew
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Post by ViewsAskew »

Cyndi, I tried THREE times to stop Mirapex before I was successful. Golly it is hard.

Now, this is just me, but switching to another DA (like you, I tried Requip next), didn't work AT ALL! My RLS was worse, actually. Next we tried Neurontin....didn't touch it. Next we tried Sinemet - I then had RLS for 36 hours straight with NO sleep.....

Again, I'm me and you're you....but it's possible that because you've augmented for a sort of long time, that you just have to stop the DAs completely.

Now, getting your doctor to go along with that....it sounds to me as if you're doing the best you can bringing him along.

When I contacted DR B when this happened to me, I really thought I'd never find a doctor who would go with his recommendations. When I did, I was sure I'd found Nirvana. It was still hard, but with the right opioid for me (we tried 3), getting off the Mirapex wasn't so bad. It still took a couple of weeks and I wasn't in the greatest shape, but I could DO it. Until then, there was just NO way I could have done it.

No wimp, you!
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Post by SquirmingSusan »

Oh Cyndi, I'm so sorry you're going through this! It sounds a lot like what happened to me when I augmented on Requip. :shock: And like Ann, I also went through a list of meds before the doctor would give me Vicodin, which fortunately worked well for me. I wouldn't wish severe augmentation on anyone, except maybe a doctor who won't adequately treat it. :twisted:

I do hope you can get the doc to write you a prescriptions for some stronger pain meds until the augmentation settles down!

I've never heard that Requip takes 2 weeks to build up in the system. It has a half life of about 3-5 hours, so it clears your body every day. And for me, it worked the first time I took it. You might want to ask about that, or look it up on drugs.com.

Hang in there, girlfriend! Augmentation is horrible, but it doesn't last forever. Hopefully yours will be gone soon. Meanwhile, keep badgering the doctor.
Susan

cmoore1958
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Location: Texas

Post by cmoore1958 »

Hi everyone! Thank you so much for all of your words of concern and support. It really does help in it's own way.

Betty -- I made it into work today by the grace of God and Him alone. I couldn't walk around the house any more or I was going to go mad. I'll have to admit that I wasn't too good of a worker, though. Thank you or the good thoughts I know you sent my way.

ML -- I'm getting plenty of exercise these nights since I can't sit or lay down for more than 10 mins at a time. LOL I know it's not the kind of exercise you were talking about, but right now, I just don't think I want to go there, no energy at all. Thank you for your concern, especially with all you are going through right now, you took time for me and I appreciate it.

Lynne -- oh, girlfriend, this is just the pitts! I'm going to take my heating pad to work tomorrow and try sitting on it. Who cares about the warning label. I'm an adult and can make this decision. I know you would help me through this if there was something you could do. Thanks for being there for (with) me.

Mark -- yes, I can take vicodin and I got my doctor to call in a prescription for it. The withdrawals are the worst. I would read the posts on the board about people augmenting and what they went through, but until I experienced it I had no idea at all. Thank you for your warm wishes.

Anne -- everything you told me in your post about how you did getting off of mirapex is what I've already wondered about myself. I don't know if I can do this one minute and dthe next minute I am so angry at my legs I vow to win the fight and the battle. I'm going to be monitoring my progress or lack of it very carefully and call the doc every time I know I need a change. Thanks for your kind words and support.

UPDATE:
I made it through work and the drive home and I have no idea how I did it. If this keeps up I won't be drivinig myself anywhere because it's getting to be not too safe. My doctor's office called this afternoon finally and he has put me on .5 mg of clonazepam and given me vicodin. We'll see.

I took clonazepam when I was first diagnosed with rls about 13 years ago and it worked well for quite a few years. Then one day it stopped working. Hopefully it will help again. The doc said he wants me to take it to help me sleep. When taking it alone it didn't make me drowsy. I hope the combiination of it with requip will help me sleep though. Tonight I graduate from the .25 mg of requip to the .5 mg of requip. I have a plan or the night -- take it as it comes. As I've learned nothing can prepare me for whatever it is I'll go through tonight.

The day was a rough one since my legs never complete stopped their restlessness. Now, they hurt really bad and the muscles seem pretty sore. I'll let ya'll know how the night goes.

Thanks again for all of your support.

Love you all,
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

hypnotode
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Post by hypnotode »

Here's hoping that you get some much-needed relief in the form of sleep tonight!

HUGS
Neurontin, Trileptal, Cymbalta, and Flexeril work for me.

Neco
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Post by Neco »

Hope the vicodin helps ya... If your lucky maybe won't even need the clonazepam :o

Also.. I think you mean "underrated" :p

ViewsAskew
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Post by ViewsAskew »

Something Susan said made me go read the first post again.

Based on what I've read, Dr B's info, and stuff the RLS docs said at annual meetings, when you switch from Mirapex to Requip or vice versa, you do not need to slowly "ramp up" to the right dose. It's about 2 or 3 to 1, Requip to Mirapex. So, if you were taking 1 mg of Mirapex, you'd take about 2-3 mg of Requip. As Susan said, Requip doesn't need to build up in any way. So, first night taking it should tell you if it's working. Just in case you started out on the lower side - say 2-1, then increasing to the higher amount could occur quickly - within a few days.

So, let's just say that (and I am just saying this for illustration...) you originally got by with .5 mg of Mirapex before augmentation. In that case, 1 to 1.5 mg of Requip would do the same job. What I am not sure about, though, is if a doctor switches you to Requip from Mirapex and you've augmented, does the doctor have you take the amount that worked prior to augmenting? Or the amount that you need now? If it's the amount you need now, does that defeat the purpose of switching? Sounds like a good question to ask....

I hope that the Vidocen helps....but I truly am concerned about continuing a dopamine agonist. I am not a doctor, nor do I want to be an alarmist....but, like Susan said in another post, if I can help anyone based on what happened to me, I'll set off alarms. On top of that is the experiences of many others who also walked in those same augmentation shoes.

Mild augmentation appears to sometimes "go away" by switching to another dopamine agonist. But, once it gets to 24/7, moves to other body parts, etc? It certainly appears based on our group's experiences that only stopping all DAs will help.

Hang in there. Keep working with your doctor. And keep doing what you are doing. If at any point this is not working, let him know like you have been. Keep after him just like you are. Don't relent....and, believe me, I know just how hard it is to do all of this when you are so tired you feel like you can't barely put two coherent words together....let along two thoughts!
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.

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