No urge to walk?

For everything and anything else not covered in the other WED/RLS sections.
jumpyowl
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Hello, Brenda

Postby jumpyowl » Mon Aug 09, 2004 12:12 pm

I could write a book (a small pamphlet anyway :) ) following your informative responses. But I will address only a few points as I got up at 4:00 am and still running out of time.

The sleep test would probably provide documentation of RLS (indirectly, because it actually documents PLMD - periodic limb movement disorder which causes near arousals during the slow wave sleep periods. 0 But polysomnography is also useful for ruling out a bunch of other sleep disorders.

I understand you concern about being labeled. Good documentation of your RLS possibly /PLMD) will help.

I am concerned with the phenomenon that doctors nowadays are so ready to prescribe antidepressants. You are right, you should have gotten rid of Elavil.

Thank you for informing me of Ultracet, it appears to be a spin-off of the hydrocodone idea which contains hydrocodone, a codein derivative as well as acetaminophen. I am not in favor with taking the second as it is not very effective and when one has to up the dose the tylenol part becomes high enough to eventually cause liver problems.

With you having polyneuropathy Neurontin is an option. Some people have good results with it. I did not like it even though it helped.

When you took the dopamine agonists did you stop Elavil and any other antidepressants?

What is your ferritin level? They claim that 20 ug/ml is still in the normal range but actually anything less than 50 is a cause for concern.

Let us know how your visit goes. I am seeing now a pain doctor Wednesday to be able to get the right prescription. Such as Ultram. 8)
Jumpy Owl

sugbrendas
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Postby sugbrendas » Mon Aug 09, 2004 1:09 pm

thanks jumpyowl,

Neuro didn't say what my iron level was only that it's ok.I will ask for numbers when I see him.If push comes to shove i'll switch back over to bc/bs til the next open season to get the help i need.I'm retired federal and any plan I choose has to take pre-existing conditions.I just will have to keep it at least a year (if my doc doesn't cooperate.)

I had planned to talk to him anyway,I wanna look into the gastric bypass surgery to help me lose wt..The Laproscopic one.Wt.'s been a real issue since I became hypoglycemic.

She did take me off of the Elavil to take the dopamine agents.

The neurotin made me very nervous,again took me off Elavil.

I agree with the sleep study and (thanks to you) i believe there's more to it than RLS(like thats not bad enough)

I'm gonna print the article about Ultram and the dosage and also take the pamplet my daughter bought me,the one you gave me a link to.

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

sugbrendas
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Postby sugbrendas » Wed Aug 11, 2004 1:29 pm

Thanks for all of the advice jumpyowl,I went to the PLMD site.I'm more than sure I have it in addition to the RLS which they say is not uncommon to have both.But I still think I need a sleep specialist as there may be a 3rd diagnoses.Nowhere in either site did it mention being a active sleeper like myself..I did find a post by "Hubby" with the exact sypmtoms like the butt as me.
There may be hope for me yet.
I also want to go to a local meeting for RLS.
Maybe once I get straight I can help out here instead of sucking all of the info I can for myself :!:

Brenda
Finally able to sleep on average 9 hours a night!

Brenda

sugbrendas
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Postby sugbrendas » Wed Aug 18, 2004 12:31 am

jumpyowl,how did your visit to the Doctor go? We're you able to get the Ultram?
I went today and he(my doctor) was so not interested in my RLS pamplet and prescribed yet another antidepressant.I am beside myself..He was resistant to everything.I didn't even get to ask him about the actual iron level...I did insist (to the point of getting nasty) to be seen by a sleep specialist and a sleep study.He said it wasn't going to prove what I already knew.He gave in.Yet he refused to look at the RLS pamplet where it says to not give antidepressants,said he knew more...
I had e-mailed "talk about sleep" and did insist he read it,he didn't want to.
The woman,the vice president bascially spelled it out for me in real easy steps.How the sleep pattern goes and how i act out my dreams when I do all of these things to my dh and dog while sleeping.It's the part of sleep where you basically become paraylized so you don't act out your dreams.
Thats why(looks like) I am so active.Then the Delta sleep I need more of..
It's the recuperative part.And i'm so dag gone tired and in a daze with this crisis.
Oh well,just had to vent.
If things aren't fixed soon and my provider doesn't get the picture I may get out of the HMO thing for a year so I can get straightened out.
Finally able to sleep on average 9 hours a night!

Brenda

Sole
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Postby Sole » Fri Aug 20, 2004 4:36 pm

Brenda,

What a frustrating experience! Many of us can totally relate to it. Sounds like it might be time to swicth DR.'s...if that's an option for you. If not, could you possibly refuse his Rx's for the anti-depressants. Maybe go so far as to say something like, "Are you trying to HURT me???" That might get his attention. What a dumb**s!

Do you have an appointment to see the sleep specialist yet?

Don't give up. Keep pushing. Keep insisting. Keep being the squeaky wheel. Someone will eventually grease you, just to get you to shut up. :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Guest

Postby Guest » Fri Aug 20, 2004 5:45 pm

Sole,thanks so much for your support,it really means alot.
I had a really great Doc when I was 1st diagnosed,he listened and was interested in how I felt..I can understand why he left!
I think I used incredable restraint for a sleep deprived menopausal woman! :twisted:
This is my 3rd Doc since my good one.I mean geez if the specialist give you antidepressants then what are we to do..I've been going over in my mind what i'm going to say to this Doc once I see him again.He didn't even give me a chance to mention the terrible headache I had that seems to go with the lack of sleep.AND my knees.I've had arthritis since I was 15 and they have been hurting so bad.
ANYWAY,I tried to talk him into visiting this site so MAYBE he could see how much frustation we go through and how stupid most DOctors are.
SOOO,this is what I did.I got some old medicine and some samples from a friend and am trying to get the sleep I so desperately need.
I took his meds then took Ultracet every 4 hours,some flexeril.
I slept great last night and today is the 1st day my legs didn't jump BEFORE I got out of bed and my kness feel so much better.
The heck with these stupid doctors.I am 50 years old and have to resort to this for the 1st time in my life just to sleep!

I've decided to join the local RLS chapter.Luckily it's only 5 minutes from here,i've already contacted the president.

Brenda

Sole
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Postby Sole » Fri Aug 20, 2004 8:31 pm

So glad you got some much needed sleep last night. What medicine did your friend give you? WIll you mention it to your Doc? I've done that before. Said to the doc, "I KNOW we're not supposed to take other people's medications BUT I was desperate and it worked for me. Can we give it a try?"

That's great that you found a support group so close to you. I'd love to hear how it works out for you.

Wishing you another night of good rest.
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

sugbrendas
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Postby sugbrendas » Tue Sep 21, 2004 8:35 pm

Sole,
I took the antidepressant and my Klonopin and added the flexeril and Ultracet..It's been awhile now and have resorted to having them shipped in(i'm not advocating it). If I can grab a Ultracet when I get up it helps alot,you know before the jumping.Then mid day a flexeril then bedtime it's flexeril,Ultracet and the 2 rx's..I feel so guily but my headaches have begun to let up.
I'm going to have to stop now though because my sleep study is Saturday.I want them to see the whole picture.
SOOOO,i'm gearing up for another sleep crisis.
My legs are bad again,probably the season changing.Things can't always be perfect!
Funny,perfect is something we all aren't used to..
Finally able to sleep on average 9 hours a night!

Brenda

Sole
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Postby Sole » Wed Sep 22, 2004 3:27 am

Sug,

The weather's been driving me nuts too! And it's just my opinion but you have nothing to feel guilty for. We are all responsible for ourselves and if you find some relief with meds, I say more power to ya!....with or without the almighty "ok" from the medical gods. Sorry, just my opinion. I look forward to hearing how your sleep study goes. Btw, did you get my private message?
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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jan3213
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Late Welcome

Postby jan3213 » Wed Sep 22, 2004 4:04 am

Sug, This is Jan

Looks like you've met one of our best members, Sole!! You're getting some great advice! Believe me, I KNOW HOW IT FEELS to have NO SLEEP and people who don't listen!!! As Sole told you, don't give up, keep pushing, you ARE your own best advocate. You know your body better than anyone else!!!! BTW, Sole is a great person--there are others here too. We are a family who cares!!! See how quickly she responded and see how much she cares? I can't tell you how much she's helped me!! As another member of our family often says, we take turns rowing the boat! Her name is Becat. I'm sure you'll see some of her posts if you read them and I really advise you to do that. You'll get a lot of good info from doing just that! And, a few good laughs, too! If you EVER need to vent or just feel like screaming and want to spread it around, you'll see my info below. Feel free to contact me, too. That's what we're here for. I've been helped--it's my turn to "pass it down". Hope you have a good night.

All the best!!!

Jan
No one is alone who had friends.

becat
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bail me out

Postby becat » Wed Sep 22, 2004 5:36 am

Hi Sug, Hi Sole, Hi Jan,
I had to laugh about you post......... in the best way possible. I was telling Jan the other day that my RLS Gatekeeper will probably have me arrested for ditching my medications for my hubby's........She promised me to run to Texas to bail me out.
you know this is one of my biggest gripes.........the right medication can do wonders. If something doesn't work for you...... LIKE Jan said, Let SOMEONE KNOW...You might have to be a squeaky wheel. I have no idea what my doc. will say or do when I have my next appt.. Whatever it is ....so be it. His ego can suffer along with my body. It's not right for any Doc. to withhold that which helps you. It is a matter of how we go about letting them know our symptoms, and medications side effects properly. Write stuff down before your appt., notes not only look good, but they help keep our big issues at hand. Call the office if your next appt. is too far out. "I have an issue now!!!!!!!" That's well within your rights.
Some people here keep a sleep diary. Some of us take our spouses or partners to the appts., added ammo.
Your headaches sound like mine. And this is one of my issues that will have to be addressed. Don't give in Hun, we'll walk you through if we have to. Gotta cell phone, we can talk you through the appt.....ha ha ha just kidding. Better yet give the doc the phone and we will party line him or her.
Hang in there, we're all doing the same.

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jan3213
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Postby jan3213 » Wed Sep 22, 2004 6:00 am

Hi, it's Jan

Hi everyone! Can I add just one more thing

Remember, we HIRE these doctors. I used to be intimidated BUT NO MORE!!!! They are, in essence, our EMPLOYEES, even though they act like they are doing us a favor!!! We sit in their waiting rooms for hours (sometimes) and they MAY give us five to ten minute if we're lucky. Becat's right, write everything down--I have a pea brain (ha!) and I ALWAYS forget something if I don't jot it down. You'd be surprised how having notes and being prepared puts a doctor a little off guard and, sometimes, makes them respect you a little bit more. Just a thought. Good night again. Sweet non-creep-crawly dreams everyone!!!

Jan
No one is alone who had friends.

jumpyowl
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Hello, everybody!

Postby jumpyowl » Wed Sep 22, 2004 7:29 am

It is great to see all the support Brenda is getting. As much as I know about you, Brenda, I can tell that you are able to take care of yourself, but also that you have more complex and challenging problems than most of us do.

I am looking forward to hearing your sleep test results. Are they looking for something specific now? Will it be a drug-free test or test with controlled drugs? I wonder why there are so few tests conducted to find out what effect new medications have on sleep architecture.

Becat, you will be interested to know that only a VERY few people have complained about not getting the right medication from their doctors!!!
That has really surprised me because this is not the impression I am getting from the stories. Actually I am getting more useful (and probably more reliable) information from the stories than from the questionnaires!
(No wonder it takes so long if one has to read between the lines!)

There are many explanations for these seeming contradictions. The only thing I can say is that I will do my best to do the job right and hopefully it will be useful.

I do not mean to leave Sole and Jan out. It is just that I cannot add anything useful to their valuable support.

It is a good group! Actually, it is a rare group for its highly supportive and candid atmosphere. And we do seem to lose the posters rather quickly who have different aspirations, do we not?
Jumpy Owl

sugbrendas
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Postby sugbrendas » Wed Sep 22, 2004 2:15 pm

I can't even tell you how much all of the support here means to me.For so many years I didn't hve anyone who understood and I suffered in silence.
Right now I'm all teary,can't help it.

I had everything written down and recieved so much info from all of you that when I went in the Dr office I was ready.I had the RLS newsletter about antidepressants..He just saw that dopamine agents work.He knew I had been on Sinamet,Mirapex and Requip and they didn't work but pointed THEM out..I don't think he knows just how serious this is..If he's frustated just think how frustated I was and very VERY ANGRY.

BUT revenge is sweet. A few days later I was picked randomly for a survey about how my last appt was with Kiaser-well do I need to tell you how bad I trashed this Dr..The others aren't any better IMHO..I had one Dr that had me diagnosed me with diabetes AND reactive hypoglycemia.
Well,we argued.You can't have both.You can have diabetes with episodes of hypoglcemia from meds but not reactive so I switched.

I hope i'm not putting too much on this sleep study. Please pray that everything i'm prone to does happen during the study.I'm supposed to take my prescribed meds.
Finally able to sleep on average 9 hours a night!

Brenda

jumpyowl
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Brenda!

Postby jumpyowl » Wed Sep 22, 2004 11:35 pm

I think that the sleep study is underutilized. I have good feelings about your study especially that they will keep you on your present medications!

Now it will depend on the technician and the doctor (as well as a bit on you, but the first two are important).

If you have a chance, read up on the polysomnography (you probably did that already), a knowledgable patient is often a better patient.

Wish you luck on Saturday.
Jumpy Owl


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