Surviving Without Drugs

[elanorbreton]

Hi, I'm newly diagnosed and at the moment my doctor has told me to spend some time just watching my diet and doing some exercise.

After reading through these forums, I am scared about reaching a point where I have to have drugs to get me through. At the moment, I get between about 3 hrs and 6 hrs sleep each night and am coping as it has only been about 3 weeks. I've got some questions and hope I'm putting them in the right place:

Does anyone out there actually cope long-term with their RLS without using drugs?
Does anyone get times when their RLS seems to go away or does it just keep getting worse?
Has anyone changed to sleeping during the day and staying awake at night, does that work?
If you take herbal sleep-aids, does it actually stop the RLS from waking you up repeatedly in the night or aren't they strong enough for that? (I've been looking at the ones which contain melatonin, valerian root, hops extract etc)

[ViewsAskew]

Welcome, Elanor,

Glad to see you have been reading; it's the best way to get your questions answers as there often isn't one "right" answer.

My first question to you is, did your RLS just come on suddenly? You mentioned 3 weeks. Daily RLS can come on that quickly, but may have a cause if it does.

Second question: did your doctor test the following: diabetes, thyroid, B12, folate, ferritin, and hemoglobin? All of these can be factors in making RLS worse.

Third question: did you start taking any prescription or over-the-counter medications or start eating differently, drinking more alcohol, or anything else?


To answer your questions:

Yes, RLS can ebb and flow. Stress can make it worse. It can get better and we don't know why. If we have it in our family history, usually it's with us forever. If it's caused by something else (called secondary), it sometimes goes away when the primary cause is treated. Per getting worse, it sometimes does, sometimes doesn't.

I imagine there are many people with daily RLS who are unmedicated. Most people with occasional RLS are. It's a choice regarding quality of life. I cannot live a reasonable life without meds, but that's me. I did it for years, but the lack of sleep eventually was more than I could take.

I have moved my sleep schedule around, but I still need meds. At least one person has posted here that she moved her schedule around and was successful. One of the RLS specialist says that eventually the circadian rhythm changes with your sleep and it comes back. So, I guess there isn't a solid answer. You'd just have to try it and see what happens with you.

The herbals...again, only you can know based on your experience. There are people who say they work. I know they don't work for me and others here have said the same or that they help some, but not enough. There isn't a one-size-fits-all answer. My only caution related to this is that it can be seductive - the wish that we could find an easy answer. But, the studies have included vitamins and they don't work. Per the melatonin, studies show it helps when you have a lack of it, but not if you don't, and then that helps you fall asleep, not help the RLS.

Ferritin is the only natural thing that has been shown to help - unless your RLS is secondary to low folate, B12, or blood iron. Ferritin doesn't always help, because the issue isn't just your stores, but how it gets into your brain. You have to have the ferritin level tested before taking iron as you can have high levels and still have RLS.

Hope this helps. Oh, please read the sticky posts in each section if you haven't - they have some information to help you get started.

[KBear]

Sorry about your recent diagnosis, you've come to the right place to learn more about RLS. I can answer a few of your questions from my experience:

Does anyone out there actually cope long-term with their RLS without using drugs? I am currently having good results by taking supplements (multi, B-complex, calcium, fish oil, iron, and magnesium) exercising regularly (currently doing 30 minutes of cardio per day (walking, biking, vigorous housework, and light weights) I occasionally use Ambien for sleep. I'm doing a trial with Sleep MD to see if I can stay away from the Ambien for a while. Some others on this site have reported good results with Sleep MD (available at your local pharmacy). I suspect that my doctor will revoke my prescription if I use the Ambien too much because of the dependency risk.

Does anyone get times when their RLS seems to go away or does it just keep getting worse? YES mine will go away for weeks at a time and this has been the biggest mystery for me. I'm never quite sure what "works" but I've been getting really good results recently sticking with the regimen outlined above plus a healthy diet of whole foods (fruits, vegetables, whole grain. protein) and no artificial anything. Try keeping a sleep/diet/exercise journal to see if you can pinpoint a pattern. Mine seems to be related to my monthly cycles.

If you take herbal sleep-aids, does it actually stop the RLS from waking you up repeatedly in the night or aren't they strong enough for that? I haven't found one that stops the RLS from waking me up however, the product "Restful Legs" by Hyland (available at drug stores)has helped me to fall back to sleep after waking up with RLS. I put a couple tablets under my tongue and I usually fall back to sleep in about 15-20 minutes, with no morning sleepiness.

I just started using Sleep MD and it definately has helped with falling asleep but not staying asleep.

[Aiken]

If you take herbal sleep-aids,

Keep in mind that herbs are just poorly-regulated drugs. I mean, heroin is technically herbal, as it's produced from a plant. The concept of herbs vs. drugs is an artificial thing, supported mainly by those who sell herbal remedies of uncertain quality and effect.

In general, you should assume that most herbs that do have an effect will produce weaker results. This is because an herb with strong results will be noticed and regulated by the FDA, suddenly making it into a drug. Consider marijuana, for instance.

The upshot of this is, herbs (unregulated drugs ) may tide you over for now, but if your RLS gets worse, you may need drugs (regulated herbs ). Don't worry too much about how various substances are categorized--it's the necessary effect you want to consider. Function, not form.

[SquirmingSusan]

Hi Elanor. You may want to Google "Jill Gunzel, The RLS Rebel" for information on coping with RLS without medication. She has a website devoted to having a "bag of tricks" to use to keep the symptoms down. Personally, I use a combination of herbs, supplements,and strong medication to keep the symptoms at bay.

I'm also one who has changed my schedule around so that I can work at my business at night, and sleep during the day when I just naturally sleep better. It's hard, though, because there is just so much that has to get done during business hours if it's going to get done at all.

I've also had good results with Sleep MD. I take it with my Lunesta, and then I can actually get to sleep and stay asleep. I don't recommend combining herbal stuff with medication, though, it's just that I have hard-core insomnia and that's what it takes to get sleep.

It's all a big balancing act, and it takes time to figure out what works for you and what compromises you need to make to have the best quality of life.

[elanorbreton]

My first question to you is, did your RLS just come on suddenly? You mentioned 3 weeks. Daily RLS can come on that quickly, but may have a cause if it does.

Second question: did your doctor test the following: diabetes, thyroid, B12, folate, ferritin, and hemoglobin? All of these can be factors in making RLS worse.

Third question: did you start taking any prescription or over-the-counter medications or start eating differently, drinking more alcohol, or anything else?

1) I had mild 'jumpy legs' very occasionally in the past, nothing that kept me awake. So I suppose it did come on suddenly quite badly about 3 weeks ago.
2) No, the dr did not test me for anything as she said I should try changing my diet first.
3) The only med I take is Beconase, it's a Beclamethasone steroid nasal spray for sinus/allergy problems and I increased my dosage of it around 8 weeks ago I think.

Thanks for everyone's replies. I've read so many horror stories on here that it's good to read some a bit more encouraging. And thanks, squirming Susan, for the details about the RLS Rebel, I enjoyed reading her pages - they were very positive.

My RLS seems to have gone a little milder the last day or two, but I only got 1 hour of sleep last night, I think I must be developing some kind of mental block to dozing off ! But, of course, you get into bed and start thinking about your legs...

[ViewsAskew]

1) I had mild 'jumpy legs' very occasionally in the past, nothing that kept me awake. So I suppose it did come on suddenly quite badly about 3 weeks ago.
2) No, the dr did not test me for anything as she said I should try changing my diet first.
3) The only med I take is Beconase, it's a Beclamethasone steroid nasal spray for sinus/allergy problems and I increased my dosage of it around 8 weeks ago I think.

Thanks for everyone's replies. I've read so many horror stories on here that it's good to read some a bit more encouraging. And thanks, squirming Susan, for the details about the RLS Rebel, I enjoyed reading her pages - they were very positive.

My RLS seems to have gone a little milder the last day or two, but I only got 1 hour of sleep last night, I think I must be developing some kind of mental block to dozing off ! But, of course, you get into bed and start thinking about your legs...

Since the worsening was sudden, it's definitely (in my opinion) worth going back to the doctor to ask for the tests. The tests aren't to treat the RLS, but to see if something secondary is causing it. Anemia often causes it, for example, but when it's treated, the RLS goes away (or back to prior levels). And, again just my opinion, but I really think everyone of us should get a ferritin test as soon as we say, "RLS."

[elanorbreton]

Thanks. I'm going back to the dr tomorrow (Saturday), unfortunately I end up seeing someone different each time but I'll see if I get on any better this time around.

I tried a hot water bottle on my legs last night and it was quite nice, I actually got a few bouts of sleep which added up to about 5 hours - whether that was the hot water bottle helping or just me being so exhausted, I dunno.

[The Artist in the Mirror]

for a lot of years i could not use drugs... but now, i can't. whats the point really?

I think all drugs should be looked at risk vs benefit but I hate when people blanket all 'drugs'.... Personally I dont take herbs because they arent regulated as well... different plants have different potency, different companies have different standards... not all herbs are safe and not all drugs arent.

5 hours is a long time to suffer.

[mackjergens]

I wen almost 30 yrs with rls, every night and no drugs, simply because back then no Drs knew about rls and thought you were nuts when you described what was happening to your legs.

So I lived on 2-4 hrs of sleep for all those yrs and spent every night walking the floor all night. Now I take hydrcodone for my rls and it controls the rls. I only wish that I could have had meds years ago, because I know for fact that going without sleep all those years have caused me to have alot of physical problems that I would not have if I had slept normall thru the yrs.

In MY opinion I would take drugs for rls, rather than damage my body by going without sleep. Your body mends itself while you are sleeping, so think about going for years without the right amount of sleep. When you stop and think about that, taking drugs for rls does not seem such a bad thing.

[Hos]

As usual, Views has the good scoop.

It sounds like you have a great attitude to try and not start any drugs but at least you know that if that time comes when alternatives don't work, there is relief out there, that is if you can find the right combo of drugs and a good dr to treat you with them that is knowledgeable.

[DrWass2]

I believe that is the subject of this entire thread...."Non Pharmaceutical Therapies".... Why everyone comes here and puts drug related answers I dont't know.

To answer your question 1....Yes....I get the creapy crawly, non pain type of RLS...Never know when or why....its been bad this last lweek. Usually starts in the evening around 7 pm...get so bad that I can't sit and watch tv without constantly moving my legs.....It eventually slows down at about 4 am. sometimes goes up into the groin (really annoying). Anyway....I found by accident that the compression stockings STOP the need to move. you still know its there but you can stay still and can fall asleep. Sometimes it the only way I can get to sleep. I start off eveynight without and see if I can sleep, if not, they go on. Try it. You have nothing to loose but your restless leg.

[Sojourner]

Never thought of this and perhaps it has been mentioned, but do compression stocking help PLM's?

[Colsy]

Hi, I was only recently diagnosed with RLS but have had the symptoms for at least 18 months. I had always thought it was other things and acted accordingly.
For a long time I thought it was poor circulation due to poor fitness and a poor diet. I had high cholesterol at the time. So I took up going to the gym and then I took up running. After a while the symptoms went away so i thought I had been right, I had a blood check and everything was clear so i kept up with my regimen.
Then the symptoms came back and i tried all sorts of things like vitamins, minerals, tonic water etc. I then got confused and thought some of the symptoms were related to my running recovery.
Nothing seemed to work, although some seemed to make the symptoms milder, so i decided to go back to the Doc and explain the whole history behind the symptoms. He said it is definitely not a blood issue and it is RLS.
So I have now decided to stop wasting dough on medications and keep up the exercising. I do feel that the more often I run the less I seem to get the symptoms. I had 10 days off running recntly and the RLS steadily got worse over that period. Only problem is when you have painful RLS it is hard to get motivated to run....you think your legs wont handle it, but they do.

In a nutshell, i think if I hadnt 'mistakenly' taken up running my RLS would be a lot worse.

[SquirmingSusan]

Hi Colsy, it's great that exercise seems to help you, although I'm not quite sure how to interpret what you said about running for 10 days and the RLS got steadily worse...

For most of us it's a balancing act. Too little exercise can make it worse and too much exercise can make it worse. Although I've never gotten to that "too much exercise" point. And I do like to exercise - walking, swimming, cross-country skiing, weights. For me it helps to exercise in the evening, which is not supposed to help. Most "authorities" say to exercise earlier in the day to avoid aggravating the RLS. It's all about figuring out what works.

Stress makes RLS worse for a lot of people (doesn't for me, though) and exercise helps reduce stress, so it would seems like it would help. And it sure makes me feel better in general, which helps as well.