In need of advice!

For everything and anything else not covered in the other RLS sections.
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Lela
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Joined: Mon Sep 08, 2008 9:30 am

In need of advice!

Post by Lela »

Hello everyone, I am new to this forum, and am in desperate need of advice.
I myself do not have RLS, but my fiance does, we both signed up for this site and forum to learn as much as we can, and to learn possible ways to help him sleep at night.
He has gone years without any help what-so-ever, operating daily with maybe 2 hours of sleep on a good night. He travels allot, but I want to do all that I can to help him when able. He suffered from a back injury and was given hydrocodone, which after his injury healed, he took to help him sleep at night, (which worked) but such heavy medication scares me. I fear his condition might range from medium to severe on certain nights. He also smokes, but from reading it wasn't placed among potential causes. (although I worry it does affect it very much) What can I do to help him sleep at night? Would massages, heatpads, and herbal lotions help?

I have purchased three books, which I found from someones suggestion and post within another thread, thank you for that! :)

"Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic"
"Restless Legs Syndrome: The RLS Rebel's Survival Guide"
"Sleep Thief: Restless Legs Syndrome"

Thank you!
Lela

ctravel12
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Post by ctravel12 »

Hi Lela and welcome to this group. Your fiance is so fortunate to have you as being so supportive is very important.

Has he seen a dr for his rls? If not I would suggest he finds a dr that has knowledge of rls. We cannot tell you what he should take as we are not drs but can offer alot of support.

You are on the right track in getting the books and reading them. It is good to educate yourself as much as you can.

If you have not been to the forum New to RLS, please do so and read the sticky post "Managing RLS" there is alot of good info that may answer some of your questions. Also Mayo Clinic Algorithm has an excellent article. Please read it and print it out so he can take it to his dr.

Please also read www.rlshelp.org and www.wemove.org

Another thing is to have his ferritin level (iron deficiency) checked. It should be 50 or above. He has to request this b/w as it is included in the normal b/w routine.

I really hope that he is able to get his rls under control as he definitely needs his quality of life back.

Please keep me posted as I am concerned.
Charlene
Taking one day at a time

SquirmingSusan
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Post by SquirmingSusan »

Hi Lela and welcome to the forum. It sounds like you're on your way to learning all you can about this disorder. Good for you! I don't know if massages, hot packs and herbal lotions will be enough for you fiance to stop his RLS, but I'm sure he would appreciate those things and they sure can't hurt. I have painful RLS and I made myself a huge rice pack that goes in the microwave. Then I plop it on my legs. Rubbing the affected areas can help as well, but often just while rubbing. The RLS may come back as soon as you stop.

As Charlene said, his best bet is to find a doctor who is knowledgeable about RLS. Sometimes that seems like finding a needle in a haystack, but be persistent. If you read the Mayo Clinic Algorithm, you'll be able to judge the doctor's knowledge about RLS.

There are many medications that are used to treat RLS. Usually what the doctors try first are the dopamine agonists, like Requip and Mirapex. Those work well for the majority of people. If he has problems with those, then the doctors will have him try other medications.

Hydrocodone is often used to treat RLS, and if it comes down to it, and that's what works the best, you don't need to worry about it. While he would likely develop some tolerance to it, the risk of addiction is very slim if he uses it as directed and only for symptom management. There are many of us here in this forum who use opiates/opiods for RLS.

Often a back injury or back surgery can bring on worsened RLS, so that's something to consider as well. I don't know what you can do about it, though. :?

Best wishes with it.
Susan

Neco
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Post by Neco »

Hi,

I am a recovering addict who along with others on this forum, takes Methadone for my RLS. Those of us taking methadone are a very small minority but I think I speak for all of us when I say we wouldn't trade it for anything - except a cure of course.

While it is good to be concerned about such "heavy" medications as opiates (Tylenol w/codeine, Vicodin, Oxycodone, etc) just remember that you should keep it as a last option on the table. As others have said you should do your best to find a doctor who is an RLS specialist. Many have heard of RLS and many more are becoming aware, but even among the so called specialists you will find the level of quality of your care to be wildly all over the chart. Part of the problem is some people go on assumed knowledge of RLS that is horribly outdated and wildly innacurate, often leading to claims that medications like opiates don't work for RLS, RLS doesn't exist and is in your head, you need to excersize and all kinds of disturbingly false claims.

Thankfully most doctors are at least going to know about Requip and Mirapex, and if they don't, should be willing to learn. A good idea is to specifically ask if they doctor is familiar with and has ever treated RLS patients before you make an appointment to see them. Come in armed with information such as The Mayo Clinic Algorithm for diagnosing and treating RLS (sorry I don't have a link, but others around here do and will provide you with it!) and watch for bad signs such as pretending to listen, brushing off concerns or points you try to bring up, and also a higher than normal resistance to reading the printout of the Algorithm if you bring it (you should) to your visit with you.

Some doctors just need a little prodding between the should blades, but if you sense it is turning south or they are not going to listen to or respect you, LEAVE! You are the boss when it comes to your Doctor, even if they don't want to admit it. The only situation where they have any real authority over you is when they themselves choose to end your relationship and not see you anymore; otherwise you should be the one in control. Just be careful not to appear too pushy or offensive to the doctor. It's not an exact science I guess =\


When going in for a Visit I think in your case it would be best to emphasize something like the following..

"Well you see doctor we know from personal experience that when he took leftover medication from his previous prescription, he had absolutely no trouble sleeping. But we would like to try other medications like Requip or Mirapex to see if they will work, we just want to know that if it doesn't work out that we still have the other option on the table to discuss". Key points it is good to have knowledge about is that statistically RLS patients take lower doses of opiates than other patients, and are at lower risk for addiction or other concerns.

A good litmus test for any doctor is the above outlines talking points..

If you sit down with a doctor and you explain that you would like to try other medications to see if they work, but need to be assured that if they don't, something like Vicodin is still an option -

and their response is to emphatically say no, brush you off as uninformed, or worse (it has happened to members of this forum) to accuse you of being drug seekers or their demeanor seriously changes towards you from genial to standoff-ish and hostile over the mere mention of painkillers - you need to stand up and leave immediately.

If anyone especially ever accuses you guys of being drug seekers or making things up, etc for whatever reason.. Be it on the first visit or after many visits and trying many different meds, definitely get up and leave if you do nothing else, and threaten to report them to the Medical Board for being incredibly rude and insensitive and lodging false accusations at you. Do it loud too if you feel justified in the need to humiliate them back. Sometimes the only way doctors learn is to be themselves treated like they treated others, while their patients get an earshot of whats going on.


Chances are these situations WILL NOT happen to you. But unfortunately your man is now suffering from a disease that is poorly researched (its getting better every day), poorly understood by the general medical community, and apallaingly managed in a lot of cases for some obvious reasonsk I have an overwhelming sense of duty about preparing newcomers looking for answers however.

You will find a very helpful and very understanding community here, and many people will always do their best to answer your quesrions and help you out in any way you need. No question is stupid here, no matter how simple - we've all been the newcomer. I hope you get all the help and compassion you guys will need

Aiken
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Post by Aiken »

I might be speaking out of my butt here, but I'd swear I've seen other people say that because nicotine is a stimulant, it can aggravate RLS.

Any (ex-)smokers in the group able to elaborate?
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Neco
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Post by Neco »

Oh yeah I forgot to mention that since I got into all the other stuff.. I believe 100% that smoking SERIOUSLY aggravates my RLS. Even when I am taking my meds.. The moment you start taking puffs you get hit with annoyances all over your body. The only difference with vs without meds, is that with the meds it usually fades away much faster so you can move and and do whatever you were doing, or you can manage to fall back asleep etc if it was a smoke break in the middle of the night.

But it still 100% can irritate RLS like you wouldn't believe. I also noticed a particular quirk with Methadone, it seems to show up mainly in doses above 15mg, or if I've backed off for a while and then increase back to 15mg this problem will show up more often than not as well. When it happens nearly every time you inhale, you beging to have a series of unpredictable and uncontrollable hiccups..

Loud ones that really suck in air and cause you to emitt quite audible vocalisations in response.. It can last 10 or 15 minutes after your last puff of the cigarette also, if not longer but less frequently as time goes on.

Sojourner
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Post by Sojourner »

L, Another welcome. How lucky you fiance is to have you. I think the heat, massages, etc have all be helpful to many here. For some more than others and mostly for brief periods of time... but sometime enuf to help get through the night or just a few hours respite. If not physically satisfying I think the psychological benefits of a gentle hand and soothing voice may be immeasurable. So, good for you. You are doing do much good by educating yourself. A good doc is your next step. There is certainly no need to jump into any "heavy" meds (though I guess all meds are heavy) unless or until you need to do that. The Mayo Clinic Algorithm give some help on a sequence of meds. A good place to start. None of the meds, heavy or light, comes without risks. You'll have to decide on the quality of life issues and what you are willing to try. But, lots of good stuff and people here to try to guide you through a process anyway.

Best wishes and grettings to your fiance.

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

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zookeeper
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Post by zookeeper »

The only thing I have to add to the great stuff already posted is that if he is still taking hydrocodone and does try to discontinue it, to do so very gradually. A sudden stoppage can cause much worse RLS symptoms as well as some withdrawal symptoms. This does not mean he's addicted but anyone taking opoiates for any length of time does have a purely physical dependancy on them. It's sort of the same thing some gets who suddenly stops drinking coffee and gets those awful caffiene headaches.

mackjergens
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Post by mackjergens »

I have had rls all my life (61 yrs old) and until 8 yrs ago I was a very heavy smoker, 3 pkgs aday. I stopped cold turkey sort of, had a lung collaspe and was in hospital for 9 days, after that I never smoked another cig. I also noticed NO difference in my rls.

But as we all say each person is different, so the only way to really know if smoking is making your rls worse is to cut back or stop for a short time and see if that helps your rls.

ViewsAskew
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Post by ViewsAskew »

Sounds like you're already doing a lot. Lots of great ideas and advice has been given, too.

The only thing I'd stress is to read as much as you can. The old posts here are invaluable. The stickys, as Charlene pointed out, are extremely helpful.

To get a medical perspective, I'd add one more book to your list: Restless Legs Syndrome: Coping with your sleepless nights, by Buchfurer, Kushida and Hening.

Good luck to you both. Having someone stand beside you when dealing with this is so incredibly important.
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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