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Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Wed Mar 13, 2019 12:48 pm
by paulande
Regarding the article in the most recent "Nightwalkers" magazine - Winter 2019. p.8, paragraph 5 states "Next it is important to get a good sleep. I don't understand this as my RLS keeps me from doing that very thing!
I have a very long list of things I have tried over the last three years as I have a very, very understanding doctor who will prescribe any medication I want to try including gabapentin, opiates, ropinarol, klonapin etc. etc. I have also tried Hylands "restful legs", essential oils(several kinds), vitamin K, 10 lb blanket, compression stockings, iron, natural therapies, vitamin B12 ,medical marijuana, hypnosis, acupuncture, no caffeine to name a few. This is not the entire 3 year list!
I acquired RLS at age 25 with 1st pregnancy. Did not ever take L-dopamine or even go to any doctor about it but at age 70 I got hit with the worst symptoms ever. Wake up ever 1-2 hours. This is when I finally tried doctoring and that has not helped either. I am now 74 and still nightwalking.

Does anyone have any comments??

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Wed Mar 13, 2019 2:59 pm
by stjohnh
Paulande, Welcome to the RLS community. You will find lots of helpful, empathetic people here who truly understand how life-altering this miserable disease can be.

I'm a 71 yo guy who first had RLS symptoms in my 30s and started needing medication in my 60s. I, too have an understanding doc who will give me almost any reasonable medication I want to try.

My first comment is that I don't see IV Iron infusions listed in your med list. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub


If you can't get IV Iron treatments, my next suggestion is to try low doses of multiple meds. RLS has two components that are separate, and generally require separate meds to treat: 1. urge to move (jumpy legs in the evening-mediated by the dopaminergic system) and 2. insomnia (mediated by the glutamate pathways).
Meds that work on urge to move: IV Iron infusions,dopamine agonists (Requip, pramipexole, etc), gabapentin (and its relatives Lyrica and Horizant), opioids, dipyridamole.
Meds that work on sleeplessness: IV Iron infusions, gabapentin (and Lyrica, Horizant), Medical Marijuana, opioids, dipyridamole.

It would be helpful if you tell us what meds and dosages you are taking now, and if you have any urge-to move symptoms or if your problem is sleeplessness only.

I included dipyridamole in the med list. Its use is considered experimental and most docs won't consider prescribing it, even though it is a safe med that has been used for other purposes for many years. I only include it because it works (I have taken it) and you said your doc was very agreeable about prescribing almost any med you asked for.

You posted in the non-drug treatment section: some people have had success with non-drug treatments. I tried several and didn't get much benefit. It seems that non-drug treatments are useful for only a relatively small group of RLS patients. I'm sure that some of those folks who have had success will offer suggestions.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Wed Mar 13, 2019 4:49 pm
by Rustsmith
My first comment is that you should understand that Dr. Paruthi has RLS herself, so she is one doctor who understands what we go through. Second, she was asked to write a column on non-medication approaches to treating RLS. I know this because I submitted a similar column that wasn't used because they had already asked Dr. Paruthi to prepare one. Finally, she didn't have many suggestions because there simply are not that many non-medication strategies that work, except possibly for patients with mild to low moderate levels of RLS. For those of us with severe RLS, you are pretty much stuck with treatments based on a variety of meds, which Holland has described already.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Fri Mar 15, 2019 5:43 am
by badnights
hi Paulande. Sounds like you're living a nightmare. I am sad that this level of suffering is still so common among us. I have to admit, I used to get livid when I read things like that - how do you expect me to get a good night's sleep when the whole darn problem is that I can't? But enough said on that. Are you taking anything for the WED/RLS right now?

Did anything change in your life about 4 years ago? Did you start a new medication or change your diet or anything at all? You're probably aware that some substances can trigger RLS/WED eg. medication that has anti-histamine-like properties, many anti-nausea meds, most anti-psychotics, any dopamine blocker. Dietary changes can be harder to pin down, but if you remember any major change, it might be relevant. Did you have an operation? That seems to be the trigger for a lot of people, perhaps because of blood loss.

I agree that your best best is probably an iron infusion. You say you've tried iron, but how much of what kind for how long, and what were your blood levels of ferritin before and after? Oral iron can be tricky. I take 3 tablets of 65 mg elemental iron each, in the form of ferrous sulfate. If you don't take the iron with vitamin C, it won't be absorbed well. So - maybe another effort at oral iron will help, depending on how you did it before and if that method can be improved on.

But the better method for us seems to be iron infusions. See Hollands's post. It is probably the single best thing for you to look into.

The other thing would be opioids. You have tried those too: which one(s), did it help at all, were there side effects, why did you stop? There are lots of different opioids, so there's probably one out there that will work for you. Barring that, you could try kratom, which is a herb that has opioid-like properties and is legal in many places (but not all).

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Thu Mar 28, 2019 1:16 am
by SuzeLeslie
How often should one have these iron infusions?

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Thu Mar 28, 2019 1:19 am
by stjohnh
SuzeLeslie wrote:How often should one have these iron infusions?
Iron infusions (except for the first couple) usually last about a year before repeat is needed, but there is quite a bit of variation. The first few infusions frequently don't last as long.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Sat Mar 30, 2019 11:36 am
by legsbestill
I suspect that what Dr. Paruthi is referencing is that, in a most cruel irony, lack of sleep actually exacerbates RLS. I have seen this referred to elsewhere also and it is certainly my experience.

After I withdrew from pramipexole following augmentation, I went into a spiral of no sleep and terrible symptoms which lasted for months. Eventually my GP prescribed an opioid which (in very high doses) settled my RLS so that I could at last get some sleep. It was only once I started to get some sleep that my symptoms started to settle down and eventually I needed a much lower dose of medication to manage my RLS. I have noticed since that if I build up a sleep deficit my RLS reliably worsens.

I hope you manage to get your RLS under control. It is truly a torture when it rages as you are experiencing.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Fri Apr 19, 2019 4:03 pm
by Stainless
I had read an article where the doctor said he had seen RLS patients who did better later in life. At 62 I'm not real encouraged from what I read above. I've been blessed with such a great life, I guess this is just a burden I have to carry.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Tue Jun 18, 2019 10:54 pm
by ksdust
this is what I do when my legs begin to twitch in bed. I always sleep with my feet on a flat pillow and wear leggings to sleep. (Like for a ballerina, lower legs only.) I get up and rub theragesic on my lower legs, wash hands afterward and don’t get any on another place. Walk to another room and do 2 exercises. One to stretch the back of the legs like standing on a book and lower heels to the floor. Or lean forward to a wall so that the lower legs are stretched. Secondly, keep feet stationary and swing hips around to each side several times. Walk back to bed and pull up leggins if they are down. I hope this helps someone!

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Wed Jun 19, 2019 7:38 pm
by Polar Bear
I would imagine that the sensation from the theragesic provides a distraction to the symptoms you have from RLS. I have on occasion, when feeling desperate, used Bio-Freeze for distraction purposes.

Your stretch exercises are exactly what is needed to help you back to bed. Mind you, I need to stretch and walk about for quite some time. Doing an exercise just a couple of times wouldn't cut it for me.

I'm delighted that this helps you.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Wed Jun 19, 2019 10:34 pm
by Yankiwi
Biogel works for me (usually), I haven't heard of Theragesic but your routine sounds familiar.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Thu Jun 20, 2019 8:26 am
by Frunobulax
badnights wrote:I agree that your best best is probably an iron infusion. You say you've tried iron, but how much of what kind for how long, and what were your blood levels of ferritin before and after? Oral iron can be tricky.


This. Oral iron is not absorbed well if your ferritin levels reach a certain range (IIRC about 75, which is way too low for RLS), and even if you're below this it will take several months until you see your levels improve. So +1 for iron IVs.

I'd also suggest to give vitamin B12 another go. Did you try high doses? I suggest one dose of at least 1000 micrograms Methylcobalamin per day, taken as lozenges. (Some of us have a reduced ability to process vitamin B12 via the normal digestion, but it's possible to supplement B12 via the oral mucosa. BTW, if you take vitamin B12 you should always add folic acid and biotin.

I was able to control my RLS for the last 3 years or so, and recently I've even started to lower my Oxycodone a bit. I credit most of that to taking daily doses of various supplements (vitamin B12, B6, zinc, magnesium, folic acid, iron, vitamin C, α-Linolenic acid and biotin), along with low glycemic index diet.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Fri Jun 21, 2019 12:54 am
by XenMan
You are setting a course for disappointment if you focus on iron or dopamine as the cause of RLS.

As for iron, there are people with hemochromatosis, high iron, who still get RLS. How do you explain one really good night, and then one really bad night next to each other; a rapid change of iron or change of iron metabolism? Such as many things, different things work for different people, but that doesn't mean you can say it is the cause.

This sums up the iron theory:
"Also, at this point, it is unclear whether the changes in iron content observed in the different brain regions are indeed a functional correlate of the disease or merely a by-product of global changes in iron metabolism in RLS. Also, though the imaging techniques used can suggest altered iron content to underlie the changes noted, they are not specific enough to prove that changed iron concentrations are indeed responsible because, for example, changed tissue concentrations of other elements..."

https://www.movementdisorders.org/MDS/J ... ndrome.htm

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Fri Jun 21, 2019 1:50 am
by stjohnh
XenMan wrote:You are setting a course for disappointment if you focus on iron or dopamine as the cause of RLS.

As for iron, there are people with hemochromatosis, high iron, who still get RLS. How do you explain one really good night, and then one really bad night next to each other; a rapid change of iron or change of iron metabolism? Such as many things, different things work for different people, but that doesn't mean you can say it is the cause.

This sums up the iron theory:
"Also, at this point, it is unclear whether the changes in iron content observed in the different brain regions are indeed a functional correlate of the disease or merely a by-product of global changes in iron metabolism in RLS. Also, though the imaging techniques used can suggest altered iron content to underlie the changes noted, they are not specific enough to prove that changed iron concentrations are indeed responsible because, for example, changed tissue concentrations of other elements..."

https://www.movementdisorders.org/MDS/J ... ndrome.htm


You are correct in that the details of how iron causes RLS are not understood, however the evidence that it is caused by BID, Brain Iron Deficiency, is very strong. The quote from the article you posted is correct as to the knowledge available in 2014, when the article was published. There has been considerable additional evidence that BID is the cause of RLS since 2014.

You are also correct that there are aspects of BID that have not been clarified yet. That doesn't change the fact that for many people, the best chance of getting off the meds currently used to treat RLS, with their VERY distressing side effects, is with IV Iron Infusions.

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Posted: Fri Jun 21, 2019 2:16 am
by XenMan
stjohnh wrote:You are also correct that there are aspects of BID that have not been clarified yet. That doesn't change the fact that for many people, the best chance of getting off the meds currently used to treat RLS, with their VERY distressing side effects, is with IV Iron Infusions.


There are many protocols that improve symptoms, including reports of some homeopathic, and I would encourage anyone to try anything that helps and keep using while it does. Even burying a crystal in the back yard may provide some placebo, which is at least more sleep than would have normally been realised.

My point is that for every current suggestion of the cause for RLS, there is an easy rational rebuke, which is objected to due to ignorance, tunnel vision or a result of the side effects of drugs, and of course sleep deprivation.

These tunnel visions of one cause and treatment work well, until they don't.