original 'welcome newcomers' post

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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ViewsAskew
Moderator
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original 'welcome newcomers' post

Post by ViewsAskew »

Joined: 28 Oct 2004
Posts: 660
Location: Chicago
Posted: Sun Jul 24, 2005 8:08 pm Post subject: Welcome All Newcomers

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Welcome! Over time, there have been some very good posts that are great for newcomers to read. I notice that many of the 'regulars' often point to these older threads when advising. Most of us feel strongly that education is your best defense and these threads are a great place to start. So, happy reading, welcome, and feel free to join in any of the many conversations going on.

Must read posts:

Links to educate and inform about RLS:
http://rls.org/phpBB2/viewtopic.php?t=549

Useful websites - more great links to sites that inform about RLS:
http://rls.org/phpBB2/viewtopic.php?t=94

You can add your voice to ours. Tell your own story.
http://rls.org/phpBB2/viewtopic.php?t=536

National Meeting Information 2005:
http://rls.org/phpBB2/viewtopic.php?t=911

Take a survey:
http://rls.org/phpBB2/viewtopic.php?t=553

Thanks to all who put these together, too! Many a person has found help and hope in them.

Ann
Edited by author 8-6-05)

Last edited by ViewsAskew on Sat Aug 06, 2005 9:51 am; edited 1 time in total

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ViewsAskew



Joined: 28 Oct 2004
Posts: 660
Location: Chicago
Posted: Fri Jul 29, 2005 3:22 am Post subject:

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I decided to copy this here (was in another post) as I think it's a combination of some of the best advice we have to give.

There is no one "right treatment." Each of us is different and what works is not the same. Some, like Sara and Capt Gene, handle RLS with lifestyle changes. Others, like Ann and Becat, did that but found we still needed to take drugs of some kind. The drug or drugs to take is so dependent on what your RLS is like, how often you have it, if you have pain, your physiology, etc. And different drugs work better or worse for different people. The Mayo's Algorithm listed in in the post above is the best place to get an idea of what you might need based on how severe and frequent your RLS is.

Many of us start with lifestyle first:
taking vitamins (E, C, magnesium, calcium, folic acid, B complex)
looking at your diet (see if things seem to help it or to set it off) and making changes
stopping alcohol and caffeine (it hides in lots of things like iced tea)
assessing sleep hygiene and making it consistent EVERY night (bed time, temperature, clothing worn, etc)
getting other disorders that may be affecting it under control
finding out if exercise helps or hurts (time of day, amount, type)
eliminating other medication that may be causing it to be worse
using ideas from the RLS Rebel Website
checking your ferrtin iron levels (if under 50, take iron under doctor's care)

Then you can assess if you need more help or that is good. If you need more help:
find a good doctor (there is a list on here, but call around and ask questions before you choose)
get a sleep study to see if PLMD is also a problem
consider medication

That's when you look at the algorithm and research as much as you can about meds, what they do, how they work, how long they work, etc. Ask the doctor what he/she thinks you should do. That's a good time to read about people's experiences with drugs and ask if what the doctor is recommending is commonly used or something we're familiar with.

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ViewsAskew



Joined: 28 Oct 2004
Posts: 660
Location: Chicago
Posted: Fri Jul 29, 2005 4:55 am Post subject:

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Thought I'd add my spin on the algorithm and drugs we take. Before anyone reads this, realize that I am not a doctor! I wrote it to help when evaluating your doctor's choices for you and to supplement your knowledge so you can better participate in your care. This is not exactly what the algorithm says as I have concerns about taking many of these drugs over long time periods. Please go read the actual algorithm (link to it is in this post: http://rls.org/phpBB2/viewtopic.php?t=549 ) too.

Here are my personal thoughts about these drugs.

-Benzos should only be taken intermittently. If you need daily help, try something else. Only if all else fails should they be used daily and long-term.
-Best benzo options are ones with a short half life; this means that I see no reason to use Klonopin at all as there are many better choices (see the algorithm and the www.rlshelp.org site for options).
-Dopamine agonists (DAs) should be the first choice for daily RLS. Stick it out if you get nausea - it often goes away in a couple of weeks or if you take them with food.
-Always take DAs at least an hour but preferably 90 minutes prior to the time your symptoms start.
-Mirapex and Requip are the first choice DAs to use.
-If Mirapex doesn't work, try Requip and vice versa.
-Sinemet and Permax should not be first or even second choices! There are too many problems associated with them and many better options.
-If you are taking a DA and your symptoms increase or start earlier in the day, this could be augmentation or tolerance (problems associated with them). A drug holiday should be tried immediately instead of upping the dose. If that doesn't work, then you have to carefully consider if this is a problem or your RLS escalating.
-Drug holidays should be used with DAs. As soon as a drug becomes less effective, immediately switch to the other DA for two weeks. Then switch back to your original DA at the still low dose.
-If you need a large amount of any one drug, it's better to take less of it and add one or more other drugs together to make a drug cocktail.
If you are taking only one drug and the symptoms aren't under control, add something else. Many of these drugs work well when taken in small amounts together.
-Neurontin on its own works best for painful, but less intense RLS. If you have intense RLS, it may work be very helpful in combination with a DA or an opioid, but is not likely to work on its own.
-Opioids, both low and high potency ones, often work well and carry a low risk of addiction. Be careful when using them, but don't let the hyperbole keep you from trying them if other drugs do not work.
-All drugs can have side effects. Only you know what is tolerable. If you have to take one drug to counter the side effects of another drug, maybe there is a better choice for you.
-Almost all of these drugs create physical dependence - your body gets used to them and stopping them cold-turkey is not a good idea! Times differ by drug and your physiology, but always find your doctor's recommendation for stopping them and stop them as slowly as needed.
-You know your body better than any doctor. If things aren't working, let the doctor know and stick to your guns!

Well, that's all I can think of at the moment. Hope this helps someone.

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becat



Joined: 29 Apr 2004
Posts: 722
Location: Texas
Posted: Sun Aug 07, 2005 10:17 pm Post subject: Bed time routine

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Hi Ann,
You and I have chatted about this before, but my brain fails me and who knows where it's at.
So, I thought I'd add this to the Newcomer thread in hopes that helps along the way.

Bed Time Routine

It's important to get a normal routine going at bed time, it's more than helpful if your on a good treatment path and can rest. I know that it's difficult to do this regularly if your still not able to sleep. But try if you can to do the same things the last 20-30 minutes before you go to bed.
This is also something that gives you a little of control when your body isn't.
It's all about doing a combination of things that are healthy and mentally good for you. Bed time can be such a fight, give yourself this routine as a good thing that ends the day. Be good to yourself and make some of these simple and special for you.
It may be a special thing that you like to wear, a pillow that you use, reading......whatever it is do it consistently.
You should also add somethings that you can use if you travel. Some of us have a hard enough time at home, but traveling makes it all worse.
Since I have gotten on the right meds and the right dose I was able to get my routine going. It's been so helpful.

My Example:
Meds on time through out the day and evening. (we always say it and it's true)
Last 20-30 minutes before lights out.
Make the dog "do his business"
Brush my teeth
Wash my face and put on the eye creme (not cause I'm old just don't' want to look my age...LOL it's a nice thing for me)
Then it's bed time...........
I lay out 3-4 TUMS to eat slowly. Not great calcium, but it's some and it's soothing to my stomach as well.
I put on the same brand and scent of lotion
Then I read, this I let happen til the meds kick in, it's a variable thing.
I have night blinders if I need them, great for travel. Hotels often have bright lights and curtains aren't always total blockage of that light. Some nights it's helpful just to make my eyes shut and stay that way.

All of this is up to you. Make this routine your own. It's about making you comfortable and adding control to this RLS junk.
Enjoy and be nice to yourself in the process.
_________________
becattx
Full Bio page 3/ New/Current Members please help/ New To RLS thread
We're all in the same boat, Let's take turns rowing. LET'S STIR HOPE SOME HOPE HERE!!!!!

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colleen
Posts: 33
Joined: Sat Aug 06, 2005 8:22 pm
Location: Michigan
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Post by colleen »

so great to have all this information ,thank you everyone for the input on this topic ,im sure al of us felt the way i feel finding this site and this diagnosis ,because i really thought i was on my owne on this one .feels so good to know ,that im not

Hazel

Many thanks

Post by Hazel »

Many thanks for the info, it helping to calm my apprehensions about talking with my GP.

Bedtime routine... that is something I have done for a long time, one thing I do at bedtime is to play native american nature music which has for me a calming affect. I take the cd player with me when traveling and it has always helped.

Thanks to all of you for reinforcing the STICK TO YOUR GUNS! approach. For years I would try to express how my body was affecting my life and each doctor would inturn catagorize my symptoms into something they were familiar with, so the rounds of tests and observations would begin always showing nothing, medicate even though it doesn't show that this is the problem just to see if it helps. Usually I would give up and just deal with it on my own using so many of the non pharmacutical applications I read about.

Love and Healing light, Hazel

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Awesome

Post by becat »

That's the spirit Hazel,
It's always easy to be brave here, in print. Then you get to the appt. and somewhere the words get stuck or there's not a chance to say them.
Be your own GateKeeper. You and the doc should work together, but you are the one taking any meds or taking the test. It's up to you to be incharge of your body, the doc (blessed as he/she may be with brains) does not live in your body.
We're with you, go girl!

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Thanks Becat ... you ladies have been a God Send.

My RLS symptoms began to increase in intensity and duration in July. In the first week of August the grounds crew were spraying insecticide and I had a severe asthma attack. Normally I don't have such problems with asthma. Since then I have had nightly leg spasms and pain.

Really didn't think too much about the increase in the rls until my husband commented that I was sleeping on the couch a lot more. Thinking on it, he was getting up to go to work at 4:30am and I was unable to calm my self enough to feel comfortable in bed not wanting to disturb him I'd go through the routines and finally put tv on mute and read the captions be able to fall asleep about the time he was getting up.

This week he began working out of town till sometime in September.

Today I am working on not focusing on the past! How I wish I had NOT gone to my GP and asked about RLS!!! My experience with the Elavil she prescribed monday has my nights a living nightmare.

She was not happy when I went back with the info from this site saying that Elavil was NOT an effective drug for RLA. When I asked at testing iron, thyroid, being diabetic what about neuropathy etc she felt it was not necessary, try the Requip and if it works fine. So I think she was not all that thrilled that I asked to be refered to a neurologist.

The neurologist is back on the 31st and a call to their office this morning they moved my appt to the day he returns.

After my experience with the Elavil, I am leary of taking any medication, but have decided to go with the Requip. My dr does not believe in prescribing Ultram etc. I had discussed this with her, that I would prefer to try temporarily a low dose opiad till my husband is back home the first of the month. Only because we live out in the boonies so to speak and being alone, I am concerned about the Requip side effects. Though others seem not to be affected from what I read here.

She has me scheduled on the Requip: 1 - 0.25 tablet for two nights, then 5 nights - 0.5 tablets then 7 nights - 1mg tablets...

As the mind permits I will be looking for others on Requip and the doseages. My mind seems to come and go as I have had little sleep! *BG*

The last two nights I have gone to bed early trying to beat the heebeejeebies... but wake with the feeling that someone is cutting off my legs and all the wonderous sensations begin their party.

My blood pressure is way up during these times and drops around mid day.
I associate that with the pain levels...

rambling Hazel (((((((((BIG HUG)))))))))))) to all...

TxSongBird
Posts: 56
Joined: Thu Aug 04, 2005 6:33 pm
Location: Plano, Texas

Post by TxSongBird »

Hazel I take Requip but have had to lower the dosage from 1 mg to .50 mg three hours before bedtime. The 1 mg made me sick to my stomach and I felt bad, but everyone is different. I wish you luck on the Requip working for you as it has for me. I have less symptoms on the medication and I also take Lexapro for panic disorder, Benicar for hypertension, Soma for my Fibromyalgia.

Donna
Donna

ViewsAskew
Moderator
Posts: 16237
Joined: Thu Oct 28, 2004 6:37 am
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Post by ViewsAskew »

Joined: 01 Aug 2005
Posts: 47

Posted: Tue Aug 30, 2005 10:02 pm Post subject:

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posted by viewsaskew-

Dr Rye's slides about drug treatments. As I was reading them, I learned the following things:

80% of RLSers taking Mirapex and Requip do NOT have any side effects or have minor ones that don't affect them taking the drugs. Of course, that means 20% do. Many of those 20% are here, the other 80% post once or not at all and then live happily ever after (so to speak )

Requip and Mirapex are the best choices for PLMD. Even a low dose can have a dramatic effect.

The average dose of Mirapex is low: .375 to .75 mg. But some people need as little as .0625 mg to control PLMs. The preferred starting dose is only .125mg.

The average does of Requip is also low: .75 to 1.5 mg

Requip and Mirapex can be substituted for each other rate of 2:1 Requip to Mirapex and without tapering or titrating. So, if your standard dose of Mirapex was .5 mg and you wanted to switch to Requip, you don't have to slowly stop the Mirapex and slowly increase the Requip. Just substitute 1 mg of Requip the next time you take it.

Mirapex and Requip are enough different that the side effect profiles have little in common. So, if you have side effects you can't tolerate with one, try the other and chances are you won't have problems.

If you have experienced augmenation on 2 DAs, you should not try any others and stop them permanently.

Methadone is one of the safest opioids to take, but one of the hardest to get. Some states ban it completely, others only allow it for heroin withdrawal.

Opioids used once a day, as most RLS sufferers take them, even oxycodone, carry almost no risk of addiction.


Ann (Viewaskew)

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

bump up just because it is informative

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Thanks Hazel. It is all in the 'sticky' post at the top of this page now, too. Makes it easier to find for me each time I want to tell a newcomer about it - which is my famous mantra.

Ann
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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