Hi all, new to the forum but not to this dreaded condition. Although I’ve tried just about every non drug treatment from yoga to exercise to iron to magnesium, over the past 20 years this thing keeps getting worse. Now it’s in legs, arms, wrists and shoulders. I’m 53 and definitely skew toward the alternative medicine side.
I’d like to see a US doc, but since I’ll be paying cash without insurance I want to skip the experimentation phases. I’ll pay to travel to their location, although I live in New Mexico.
Suggestions welcomed! And best of luck to us all. 💪
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Marlayna67
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You say that you've tried every non drug treatment, but have you tried changing your diet? It could be that you have SIBO (small intestine bacterial overgrowth) in which case avoiding sweet and high carb foods can help. You might also have another trigger, but that will be easier to spot if you have eliminated the SIBO issue. I don't know whether I have SIBO because I found the solution before finding what could be causing the issue, so I looked no further. I've eliminated my rls by avoiding high carb foods and potassium sorbate food preservative (E202).
A diabetic told me that her rls was through the roof when her blood sugar was high, so I'm confident that it would help. This might help. though it gets quite involved when you start following some of the links to case studies. siboinfo.com/
I am working on eliminating sugar as well, so I picked up some full-fat "lactose free" milk. Just wish I'd read the label first! They just add lactase, the enzyme that digests lactose. The sugar isn't removed! It still has all the sugar, and actually tastes sweeter than regular milk. Just a heads-up in case anyone else was thinking about switching. Misleading labeling!! And 12g of sugar per cup is a LOT.
I noticed that on the SIBO website, I also noticed that it disaccharide enzymes so that sucrose and starch aren't broken down and absorbed but they just feed the bacteria, so avoiding sucrose and grains is all important. (blog 6/21/2011)
Interesting stuff, isn't it? Now I gotta see Lord of the Rings! Not easy getting rid of all the sugar and starch, but I've just about got it licked. And reading that blog post, perhaps "lactose free" milk is better anyway than the other, though it still has the sugar in it. At least it's broken down.
It's not just the sugar you use, you've got to remember that there is a lot of sugar in things like jams, chutneys, barbecue sauces etc. and sugar and starch together in cakes and cookies.
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Well, the kicker is that grains all turn to sugar too, as soon as they are eaten. Cereal, crackers, bread, pasta, etc, etc. Sugar and carbs all trigger an insulin release, and they all mess up the gut flora. Not pretty.
Well, from what I understand, fructose isn't a good thing, though it's high fructose corn syrup in processed foods and soda that is the worst. Fructose in fruit is generally recommended in small quantities but still allowed on most diets I've seen. Grapes and bananas have a lot, berries are better choices.
I think fructose is a monosaccharide sugar so it's more easily absorbed, so isn't available to the bacteria for long. It's the disaccharides like sucrose, lactose and starches that are the real problem.
Hi there! Immediately went on the diet you suggested and low and behold MUCH BETTER! We're doing a keto/paleo sort of diet and I feel tremendously better. Had one really terrible night on day three, and had to break down and take a painkiller my mom sent for such nights. Since then, I'd have to say I'm 80% better. This is like a crazy miracle!
Avoiding daily drugs for just a little bit longer now....
Glad to hear it. If you're like me you should find a gradual improvement in general health over the next few months. I've noticed after nine months that my breathing has improved so much that when I'm on my bike, my average power output has gone up around 20%. I put that down to the inflammatory action of the sugar.
I go to Dr. Earley at John Hopkins Bayview in Baltimore, Maryland. He has articles and videos he has written about the studies and research he is doing for RLS. Also, I definitely do know that when I eat too much sugar my RLS goes crazy. I have never gone completely off sugar to see if that would help. RLS runs in my family. I am currently on morphine for RLS and have been for some years after trying many other medications including opiates. So far I am still able to relieve it with the same morphine dose I started with and no augmentation. Hope this helps. I do not live in Maryland and travel to see my doctor.
I hear you. It runs in my family too. My 84 year old mother is weak, overweight, and frail in strength. She has unlimited hydrocodone and sleeping pills, yet some nights she is in agony with this condition. Hydro has helped me when I've taken it here and there, but it is definitely not a cure. That morphine sure sounds good!
I had been augmenting on DAs & taking tramadol and cannabis. Never did get much relief from rls until I saw Dr Buchfuhrer.
If one where to make an appointment with him it would be best to call his medical office in Downey California. He also is at the Stanford sleep Center in Redwood City California. But he is only there about one day a month. So the waiting time to see him is much shorter if you see him in Downey California. I have left his number in a previous post.
I’d like to add some additional possibilities to the information already posted. I, too, lean toward alternative approaches. I was on oxycodone and pramipexole for my restless legs and body, and I was able to drop those and replace them with kratom, which has worked very well.
However, like so many substances both pharmaceutical and otherwise, kratom seems to work by alleviating symptoms. I’ve wanted to identify and deal with the underlying cause if possible. So I’ve been using kratom to make life livable while simultaneously pursuing several approaches to see if I can’t end the restless legs/body symptoms entirely. To that end, I engaged Dr. Robert Jangaard, a naturopathic physician in Freeland, WA (see jangaardclinic.com), who is a specialist in modern Electrodermal Feedback. You can read more about that process on his web site. I understand it is widely used in Europe, but is practically unknown in the US. Using that process, Dr. Jangaard has been able to identify imbalances specific to my physiology, and prescribe supplements targeted to alleviate those imbalances. I’ve been working with him for several months, and my restless leg symptoms appear to be receding, for which I’m very grateful. You can read more about the Jangaard Clinic on their web site and see if that is something that resonates with you. I’m glad to answer questions either through the forum or by private message.
At the same time, I have been following many of the dietary recommendations of Anthony William in his three published books (“Medical Medium” being the first), and I’m pretty convinced that my change to a much more plant-based diet with an emphasis on fruits and vegetables has also been a significant contributor to my symptom recession. Others on this site have also reported positive changes due to moving to a more plant-based diet. Given that I’m doing multiple things at once to deal with my symptoms, it’s not always easy to figure out which change or changes are the ones having the impact. It could be all of them at once. But the above two are the ones I believe are having the lion’s share of the impact.
Food sensitivities are possibly a close relation to all of this. Although I’ve had standard IgG food sensitivity tests in the past, I was just recently referred to the food sensitivity test developed by Oxford Biomedical Technologies (see nowleap.com), which appears to be a significant advance in technology from the previous ways of doing food testing. My interest in this stems from a hunch that, for me at least, RLS may be a symptom of a food sensitivity or intolerance, and I have to believe that eliminating such foods from my diet will be helpful in an overall healing process that will, I hope, include RLS symptoms.
One other source that you might wish to consider is Ojai Energetics (see ojaienergetics.com), which has developed a water-based hemp elixir, which I’m now testing out. So far, I’m impressed. The methodology they use for getting CBD into the body is different than others, and there is quite a bit of interesting information on their web site.
I hope this is helpful. Best of luck in your healing journey. Please know that others are with you.
After switching to a paleo/keto diet at the beginning of last week, I feel tremendously better, like 80%. It's the only change I've made, and I've had my best two weeks in years. More investigation is definitely needed here!
Wow thank you! I just bought some kratom but haven’t been brave enough to try it yet. I found that CBD for some reason really exacerbates my RLS. I will check out all the websites you’ve mentioned and perhaps it’s time to get more serious about diet. I do tend to eat very very well but I know some improvement can still be made.
I have had RLS for about 25 years. I'm 61. Fortunately I have not had much of an augmentation issue with Pramipexole. I generally take .25 MG about 3-4 hours before I go to bed. Interestingly, if I take it after 8:30 It can take like until midnight or later to take effect. Now I usually take .25 around 7:00 PM and then take maybe 1/4 of .5 mg tablet around 10:00. I would say it works around 90% of the time for me.
I sleep terribly anyway and thought I might try to very good CBD oil for sleep as well as to help my joints. In general I am blessed with NO joint issues other than just getting older. I tried to take CBD right before I went to bed and it pretty much seemed to stop my RLS medicine from working at all. It was horrible. This went on for about 10 days. Now I take the CBD right when I get home from work. That has seemed to work, but it has NOT helped me with my sleep at all. It has made me feel better from a joint/flexibility standpoint. It's not cheap so I am not sure if I will buy more.
I would say it might be helping me to get to sleep initially, but I don't believe a lot of the hype.
I hear you. CBD does not help me at all. I might even say it makes it worse for some reason. I feel an underlying anxiety that my family members do not experience.
I was on sinamet for 15 years, had to take more and more and it made me very nauseated. Requip, Mirapex, sleeping meds, Ambian, OxyContin, Oxycodone, Methadone, Suboxone and now finally morphine. The methadone and suboxone worked for RLS but I was nodding off all the time during the day. I had no life because I was dozing off all of the time and no motivation while on methadone and suboxone. I now have Hashimoto's Thyroid and I wonder if these meds destroyed my immune system. I can't find anything about this though on the internet. I have several autoimmune diseases now. I may have developed these anyway but I will always wonder. I get RLS everyday if I do not take my medication by at least 5 pm each evening. Sometimes I will get RLS during the day but that is rare now as long as I do not forget to take the meds. Hope you find something that works for you. I know how miserable it feels.
I'm sorry to read this. Have you tried the diet changes others have suggested? It's really helping me, even though I didn't want to believe it could be that simple!
Not sure why so many people resist mainstream medications for this. Dopamine is a naturally occurring substance in the body and the dopamine agonists, unless there are major augmentation issues have zero track record of being harmful. I don't understand why people might suffer needlessly from this. No change in my diet has made any significant difference for me in the 25 years I've had it. I am 6'1" and weigh about 188 so while I am not skinny, I don't think anyone would say I am too heavy either.
So many issues are related to dopamine so if the agonists help, I don't understand the fear some seem to have.
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