rls and non-pharmacological treatments

[Cather]

Are there any non-pharmacological methods to control rls?

[Jumpey]

Many people find relief simply from raising their iron levels through oral iron supplementation. For RLS sufferers, ferritin levels need to be at least 100. Others find taking a magnesium supplement helps- although there is no research that I know of that suggests that low magnesium levels cause RLS. Others find that a change of diet helps.You could keep a food diary and see if you have food triggers.Alcohol and sugar seem to be common antagonists. Obviously, generally having a healthy lifestyle helps with any disease. Good luck.x

[Joolsg]

As Jumpey advises, raising serum ferritin above 100, preferably 250 helps the majority of RLS patients but doesn't seem to be as effective for some if the dopamine receptors have been damaged by years on Dopamine Agonists.Magnesium seems to help some people ( although it does nothing for me) and others find restricted diets like low fodmaps or low carb help.

However, if you're still rotating Pramipexole, nothing will really help until you get off it completely. These drugs are no longer first line treatment. The new Mayo algorithm puts pregabalin as first line treatment.

I know you don't want to try other drugs but they are a better alternative than Pramipexole.

You will find that your dopamine receptors will settle after a month or two off Pramipexole and on other drugs.

Many of us have switched to other meds and have found relief.

I hope you reconsider switching to either pregabalin or a low dose opioid.

Happy RLS free New Year

[notnowdad]

I achieved almost complete relief by following a low oxalate diet. There is information about how to implement this regimen on many websites. It takes real commitment to achieve relief this way because there is some oxalate in almost every plant based food, and unfortunately our bodies have the potential to produce oxalic acid endogenously. The key to making it work is the understanding that the reaction time to high oxalate trigger foods is about 24 hours. Oxalic acid is the key ingredient in the household cleansers which remove iron stains and there is promising new research into how it interferes with our bodies’ utilization of iron.

Over time I have worked out several things that aren’t known by most of the practitioners who dispense advice on the low oxalate diet websites. Some vegetables and fruits in the grocery store are routinely sprayed post harvest with an oxalic acid solution in order to preserve freshness and nutrients. I have been able to enjoy only “organic” asparagus and artichokes which are among the most commonly contaminated “low oxalate” vegetables. For this reason I buy organic whenever possible.

Another misunderstanding is that all meat products are “safe” because they are oxalate free. Gelatin, which is high in glycine, causes my liver to produce oxalic acid at a greater than normal rate. Our livers typically produce some oxalic acid as a waste product. My RLS seems to be partly be due to a tendency to over produce it. I avoid gelatinous soups and stews. I can tolerate chicken broth made from breasts, thighs, and legs, but not from the whole bird. I worked all this out after magnesium glycinate supplements brought back my RLS discomforts. Researchers have recently confirmed that eating gelatin raises urinary oxalate.

Most people who pursue this path achieve about 90% relief. After years of perfecting my approach I had gotten to about 96%. Even with my best efforts I would sometimes have difficulty working at the desk all day or being comfortable on long car trips. Or there would be unpleasant “leg awareness” in bed at night. However, my continued efforts to pay attention to how my body responds to things I eat has led me to a most extraordinary new perception. If I avoid all the standard cooking oils made from seeds (corn, canola, soy, etc.) while I also minimize my exposure to fluoride, I go from being a person with very severe allergies ( to both pollens and dust mites) to being a person without allergies.

In recent months I have avoided all of the industrialized seed oils which are refined, bleached and deodorized using toxic chemicals. I have also gone beyond the standard protocol of using water filters to remove fluoride from drinking water and taken extreme steps to avoid the fluoride exposure we get from most non-stick cookware and canned foods. Not only have I become completely allergy free, but my relief from RLS is now 100%. However, I am not “cured” and I have to maintain my low oxalate regimen in order to stay free of RLS discomforts. Buying organic helps to avoid the fluoride which is in many pesticide residues.

For years I have wondered why my body lost its ability to tolerate oxalate in food. I now suspect that hexane residues in the seed oils have made me susceptible to the toxic effects of our modern day over-exposure to fluoride. Somehow the pernicious effects of the fluoride have weakened my resistance to oxalate. I have shared all my progress with these issues in multiple posts on the rls.org discussion board for non-prescription and dietary solutions. I wish you all the best.

[Boldgirl45 in reply to notnowdad]

I find this fascinating- thanks !

[Guitarpickin]

To add to the suggestions that have already been made, a rigorous pre-bedtime stretching routine has been a game changer for me. It’s irritating to spend 40ish minutes stretching my back, hips, and legs every evening, but if I skip it, my nighttime is miserable and marked by hours of leg symptoms (creepy crawlies, cramping, involuntary jerking, kicking, and shaking). I have no idea why stretching helps, but it’s proven an invaluable treatment method. I learned about it from another person on this site and will forever feel indebted.

[Hidden in reply to Guitarpickin]

Hi Guitarpickin, sounds like you’re doing well. My first inclination was to ignore your solution because I’m just a dismissive bitch in that way. I’m working on it. Anyways, my understanding of how the transmission of dopamine works is that it is released from receptors in the brain then down the spinal column (aka the Central Nervous System-CNS) to our peripheral nervous system where that dopamine (a neurotransmitter) quiets our arms and legs. As I further understand it, the dopamine/neurotransmitter bounces down our spinal column, which is composed of nerve fibers and continues to bounce along nerve fibers in our peripheral nervous system.

I picture the non-RLS world as having a very strong signal and we with RLS having a very weak one. Usually it’s good enough until something interferes like a spine injury. The signal of a non-RLS person will push right-on past that injury, whereas our signal will be greatly disrupted and RLS worsened. Maybe, just maybe, your stretching is including the stretching of those nerve fibers which make them a better transit system for that dopamine neurotransmitter. See below:

jssm.org/mobile/fulltextmob...

Remember that where they say stretching increases the pain threshold that is a good thing. It does not mean it increases pain.

If this is at all true we should all be trying this. Then we need to elevate stretching to a science rather than an art. What are the best stretches for nerve fibers? How long should the stretches be held? You get the picture.

[grassgree in reply to Hidden]

Yinyoga is helping for a group of us on this site. Try it, no harm done.

[Hidden in reply to grassgree]

I belong to a Yoga studio and do Yin yoga about once a week. I very much enjoy it.

[grassgree in reply to Hidden]

I should add to my previous reply on yinyoga and the benefit of stretching--I only get RLS pain in my right leg, not the left. I've been told that there is no mechanical/structural component to RLS, but I'm not buying it. Exercise has been a consistent irritant over many years.

[Hidden in reply to grassgree]

I believe the structural component(s) to RLS are small and few D2/D3receptors in the striatum compared to the average person. Those receptors then give off a weakish dopamine signal (called a neurotransmitter) that must make its way down our spinal cord and to our peripheral nervous system via neurons/nerve fibers while once there quiets our arms and legs. Because the signal is so weak, any bump in the road, such as a back injury can very easily make the symptoms worse or trigger in the first place.

If exercise worsens symptoms, temporarily, I feel that is a good thing. No pain no gain. Anaerobic exercise is supposed to make our D2 receptors bigger and better. Everyone’s, not just the RLS world. However, the RLS world tends to feel the effects of this up-regulation in the form of a temporary worsening of symptoms.

This one paragraph kind of explains the route of that dopamine neurotransmitter, I believe

britannica.com/science/axon

And this: flexbooks.ck12.org/cbook/ck...

[grassgree in reply to Hidden]

If exercise makes our D2 receptors better, wouldn't it follow that symptoms should improve over time with regular exercise? Maybe I'm an outlier, but this is the opposite of what happens to me. I have to choose between exercise and sleep. And why would a purely metabolic reaction affect one leg and not the other?

There are a lot of unknowns with this miserable condition.

[Hidden in reply to grassgree]

Yes, should improve over time with exercise, that would be whole point. I’ve become a two trick pony in terms of RLS. I tell people to stop eating after 7pm and fast till breakfast time - every single night. I also tell them to try what I suggest on my profile page.

[grassgree in reply to Hidden]

If exercise consistently exacerbates it over time, there is apparently another factor to consider.

All those unknowns aside, this site and all you people have been so helpful. I am so grateful for the support and for helping me avoid going down a rabbit hole of bad meds. You folks listen and contribute and take the time to help. All the best to you in the coming year!

[Guitarpickin in reply to Hidden]

LonePine, I love your honesty. I also love that you tried to research why stretching may be helpful, despite your initial inclination to ignore the suggestion. Thanks for adding the link to the research document. It was very interesting. As a few other people said, the helpful stretching previously posted on this site was specific to yin yoga. I don’t really know what that is, but it sounds like you do! From a cursory google search a while back, it seemed it had to do with holding the stretches for a long time-maybe 3 min each, or something. I don’t do that. But I try to hold them for as long as feels good or as long as I can tolerate. I do have spinal injuries, so the stretches I do revolve around exercises given to me in physical therapy sessions.

[Eryl]

Lowering carbohydrate intake to keep blood sugar levels and hence chronic inflammation down. Avoiding refined seed oils also helps becaue they are pufas (polyunsaturated fatty accids) which cause oxidative stress and inflammation. Some people are also sensitive to oxalates or nightshades.

[Goodfairy]

Read doctor yourself.com written by Andrew Saul on the importance of vitamins

[drwasss2]

Have you tried compression stockings?No meds, actually works great for many.

Try it before you say NO.

Just everyone is looking for a drug to solve their problem,!

[Guitarpickin in reply to drwasss2]

I agree. Simple things like compression stockings, dietary adjustments, exercise, stretching, breathing exercises/meditation, should all be tried first, before starting or increasing meds. Nothing to lose and everything to gain.

[Graham3196]

I am on a diet that helps me. I have periods of up to 6 weeks with almost no RLS.

I have been trying to send you a message but it doesnt seem to work. If you like to send me a private message perhaps I will be able to reply.