Help!!!! I'm so miserable

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badnights
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Post by badnights »

I think you did get something out of Dr. B's reply. First, he agrees you're probably augmenting, so getting off the Mirapex is better than raising the dose. Second, he confirmed that Sinemet is not to be used for daily RLS; right there is something you should print and take in to your neuro.

Third, he suggested alternatives: Lyrica (pregabalin) or opiods. Your neuro may not be comfortable with opiods, but let's not have the funeral before the idea is dead - your neuro may have been reading up on RLS behind your back and may already be considering them as a next step should you ever need one. The Lyrica might make you sleepy, so as long as you're still on the Klonopin it's probably not a good idea. Changing to one of the gentler hypnotics is a possibility despite the cake-eating episode, but maybe you would need something other than Ambien - your neuro should be able to speak to that sort of thing.

So all in all it sounds like you have some potent advice to bring to your neuro (no Sinemet), and a suggestion that you try either opiods or anti-convulsants. You print that whole email exchange - your question and his answer - and take it in to your doc. And ask to get an appointment ASAP, you hate to be a bother but you don't know how much longer you can stand the abnormal sensations, they're driving you up the wall and you haven't slept more than an hour or two at night for over a week ... say it like that. How will they be able to judge your need if you don't tell them what it is/

You'll be fine, just need to get those meds fixed.

ViewsAskew
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Post by ViewsAskew »

Oh, I surely understand that worry that you are back to Square 1! It's an awful feeling.

If I've only learned one thing, though, it's that you can't ignore it when you're faced with Square 1 and you feel like it's Groundhog Day all over again. Well, you can ignore it, but it doesn't get better until you can face it.

The first time I was so badly augmented and we were looking at things like Methadone, I was terrified. What the heck was I supposed to use later, when I got older and it was worse? I mean, I knew I could 50 or so more years of this stuff, given that the women in my family tend to live into their 90's.

But, I finally did it and it helped. When it got out of control the second time, I waited almost a YEAR before I went to get help. In the process I didn't sleep, couldn't work in my business very well, caused my hubby a lot of unnecessary anguish and more.

In the end? I still had to go and try. Back to Square 1.

It wasn't great - I'd be lying if I said it was. But, is wasn't the end of the world, either. The main thing is to pin the doctor down to a plan. You have the algorithm. You have the email. You have the books he wrote. Take them in and let the doctor know that you're scared that you'll be without sleep for an extended period and you need to feel that you've a plan. Ask him to create one with you - such as what he'll do if something doesn't work, can you call him even on the weekends, and how you'll agree that it's time to try a new thing.

Once you feel safe - that there is a plan and that he's on your side - I think you'll feel a lot better about it. And if he can't do that for you? Then you'll probably feel sorry for yourself and feel desperate that there is no help. Eventually, you'll dust yourself off and head to the next doctor. I'm writing it as if it's easy....it's not. I know it's not - it never has been for me. In the end, though, it's always better once I've done it.

Hang in there, Betty. You'll get through this, too, even if it doesn't feel like it.
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.

badnights
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Post by badnights »

Ann, you really should write that novel.

Betty/WV
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Post by Betty/WV »

Thanks for the advice and for caring. I really appreciate it. :D

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Post by ViewsAskew »

I'd be in a very sad place if it weren't for the people here who helped me along the many years. The least we can all do is pay it sideways, lol. I know it'll be there for me when I need it. And, I'm sure to need it again before it's all over.
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.

SquirmingSusan
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Post by SquirmingSusan »

Betty, so sorry you're still suffering with this. RLS truly sucks. Have you been able to call your doctor yet? Hopefully you can get in to see him soon, armed with the Mayo Clinic Algorithm and Dr. B's email. The key is to really convey just how miserable you are so that the doctor doesn't just blow you off. Somehow you have to let him know that you just can't live with the RLS being so bad, and you are hoping that he will do whatever he can to help you, or refer you to someone who will, and soon.

Hang in there!
Susan

dogeyed
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Post by dogeyed »

Betty,
I hear you, for sure. Go for the oxycodone that Dr. B was suggesting, you will do fine with it, it will knock the RLS out of the park. Now, hopefully you can just take that. But some people will fool with that a while, and after a long time, they'll go back to the recommended stuff for RLS like mirapex and requip until they augment again. If your doc resists the oxy stuff, DO print out something that says one of the four categories of RLS medicines is indeed the opiate derivatives, and THEN you can suggest that you just stay on the oxycodone for say a couple months, and then switch back, and that way he may be more forthcoming. Let us know what the doc does for you on your medicine issue.

But really and truly, almost everyone who gets on the opiates quits having all these problems with RLS acting up and ruining their sleep and generally wrecking their lives. And all this "drug war" business is obviously not working very well, i.e. "Border Wars," and it is UNTRUE that a person prescribed opiates is going to haul off and become a drug addict, abuse everything they can get their hands on, and become a stealing killing denison of the night. Once a mature adult realizes that either they control what they take or else they can't have it, they dutifully stick to their dose and are glad for it.

Oh, and in the meantime, put on some support stockings, I use knee-highs, when the RLS trips out and keeps me up. A heating pad on the legs also will help ease discomfort to a degree, as will a hot bath. An alka seltzer helps a person sleep, too. But the support hose, if you put them on at bedtime, they'll squeeze the rippling muscles just long enuff for you to fall alseep.
GG
"It's not how old you are; it's how awful you feel."

Betty/WV
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Post by Betty/WV »

thanks for the suggestions. I have taken vicodin off and on for years. And I never abused it. An example is---my neuro gave me a script for 15 a few months ago and I still have a couple. Of course I have been saving them for when I am desperate. And I gave him the MayoClinic Algorythm and an article that I printed out on augmentation. And I ordered a copy of Dr. B's book "Restless Legs Syndrome, Coping With Your Sleepless Nights." I ordered a used copy from Amazon.com, but it just came today and it looks like a new copy. So when I go see him I'm going to give the book to him. You just wonder, will he read it.

I have compression stockings, knee high. I used them when I had whole knee replacement. They feel good when you have them on but they don't stop the RLS. A hot bath helps me but a heating pad doesn't. We are a weird bunch aren't we. What helps one, doesn't another.

I'll let you know how things go. Thanks for your concern.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

dogeyed
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Post by dogeyed »

Bett, thanks for the feedback on my "cures"! GG
"It's not how old you are; it's how awful you feel."

Betty/WV
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Post by Betty/WV »

It's me, back again. Does it never end with this horrible RLS. I have artheritis plus the RLS. My feet have been hurting especially my left one, and especially at night. I find myself rubbing one foot over the other. I have had X-rays of my feet and it has been determined that I have artheritis in my feet (and many other pla ces.) And I just always thought the pain and movement was because of the artheritis. Now I think that the RLS is in my feet. I was told that I should be able to distinguish if the problem is from the RLS or the artheritis. Artheritis shouldn't hurt as much at rest, and RLS is more of a problem when trying to rest. So now it makes me think it must be the RLS, because that is when it hurts. At night and I have to move my feet.

I know, I'm rambling.

I know I should call the neuro., but I'm afraid of what he may do next. I know he doesn't know much about RLS. And I'm afraid I'm augumenting and I know he doesn't know anything about that. But I did give him information about it. :?

My symptoms seem to start in the morning. Which they never did before. I had a horrible time last night sleeping. I had a lot of chores (running around to do) yesterday and usually when I come home I'm exhausted and have to try to lay down. Well, when I got home my husband was very sick, dizzy, vomiting etc. I called his doctor they sent us to the ER. They checked for stroke, heart and vertigo. Thank goodness, it was vertigo. And we were at the hospital until 8:30 PM. So you can imagine what a night I had trying to relax and go to sleep. Today I feel like someone beat me up.

Any feedback, I would appreciate. Sometimes I think there really isn't any answer. That I am doomed to misery. No quality of life, I feel like I am just existing.

Sorry, for the dark thoughts.

BETTY/WV

P.S. If this doesn't make sense, remember the state I am in right now.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Post by Polar Bear »

Betty, you are making complete sense and are just exhausted.

Sorry for your misery and dark thoughts, sometimes dealing with rls plus the arthritis can be a bit overwhelming, then add having to go with hubby to ER and worrying about him. The whole emotional upheaval on top of everything else throws all into overdrive.

This is the place to come and say how you really feel. 'Doomed to misery' is pretty descriptive and I feel for you.

I don't know much about augmentation but no doubt there will soon be posts from those who have advice in that regard. But I do have rls 24/7 and so can understand how miserable daytime rls can be especially coming on the heels of no decent sleep.

Is your neuro willing to work with you using the Mayo Clinic Algorithm.
Betty
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Betty/WV
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Post by Betty/WV »

Thanks PB for understanding. The last few days, weeks, I forget how long. But it is all overwhelming especially yesterday, taking my husband to the ER and all. And stress is no picnic along with RLS and everything else.

I will be going to my doctor, and I have given him all the information, MayoClinic Algorythm, articles on augmentation from RLS.org. and I have Dr. B's book (RLS and coping with your restless nights.) to give to him. I bought him a used copy. I have my own, but won't part with it. I'm going to just flat out ask him if he is willing to work along with the Algorythm. You never know how a doctor is going to react. But when I took him an article on augmentation, he did ask me if he could copy it, I told him I brought the copy for him. So that was a good sign that he ask to copy it.

Anyway, one day at a time. Thats all I can deal with. Today was really a waste. But I needed just to be lazy today.

Thanks again, for listening.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

badnights
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Post by badnights »

Betty, have you made that appointment yet? Please don't be afraid of something that may not even happen. You can't deal with the augmentation without his help, so go on ahead and make that appointment and take it from there. You have oodles of courage, I can tell you do, so you have to do this thing.

Don't forget to bring a print-out of Dr. B's email with you. (It won't seem dubious after you point out that he's an author of both the book and the algorithm.)

An observation: some older physicians are somewhat scornful of the "algorithm method", which tries to reduce everything to a simple-to-follow protocol and sometimes loses people thru the cracks who would have otherwise been caught by good clinical judgement. So regard the Mayo algorithm as a source of information, rather than a fail-proof recipe for treatment.

Go on and make that appointment girl. You have to do it so things can start getting better.

badnights
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Post by badnights »

oops sorry - you said " I will be going to the doctor" Presumably that means you've made the appointment. :oops: :oops:

SquirmingSusan
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Post by SquirmingSusan »

As I was reading I was thinking I'd post and ask if you'd made that appointment yet, Betty. Then I saw that Beth already asked. Please, if you haven't called yet, make that call and get the appointment set up. Then do your best to describe your misery to your doctor and ask for help. Then go from there.

You deserve to get some relief from all this suffering, and you will eventually if you keep plugging along and exploring the options. It's just so hard to keep making those appointments and getting to the doctors when we're just so exhausted that we can barely make it to the bathroom when needed.
Susan

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