Restless Legs Syndrome (RLS) Discussion Board

I have scleroderma (autoimmune) and venous insufficiency, and lower extremity lymphedema, RLS, and am a cancer survivor. I improve with absolute gluten restriction, and avoiding refined foods. My Inflammation increases with refined foods. The Wahls Protocol (book) drills down to the issue of problems with cellular energy as an underlying cause for health malfunctions. In her case, MS. Her analysis of the need to drastically increase vegetable consumption seems similar to Dr. William Li’s work, and Fiber Fueld. Any other recommendations on cutting edge nutritional science?

Restless Leg Syndrome (RLS), venous insufficiency, and lower extremity lymphedema are all conditions related to poor blood circulation in the legs, with a significant overlap in symptoms like leg swelling, discomfort, and a strong urge to move the legs, particularly at night; often, treating underlying venous insufficiency can significantly improve RLS symptoms, and in some cases, lymphedema can also contribute to RLS discomfort due to fluid buildup in the legs. 
Key points about the connection between these conditions:
Venous insufficiency and RLS:
Studies show a strong link between venous insufficiency (poor blood return through veins) and RLS, where the pooling of blood in the legs due to faulty valves can cause the restless sensations characteristic of RLS, especially when sitting or lying down for extended periods. 
Lymphedema and RLS:
While less commonly discussed, lymphedema (swelling due to a dysfunctional lymphatic system) can also contribute to RLS symptoms, as fluid buildup in the legs can lead to discomfort and the urge to move them. 
Treatment implications:
If you experience RLS symptoms, addressing potential underlying venous insufficiency through treatments like compression stockings, lifestyle modifications, or even vein procedures can often provide significant relief from RLS. 

Some people respond to leg vein treatments, some do not. So do better with diets that restrict various nutrients and others do not. I have seen several reports from people whose doctor convinced them that their RLS was due to vein problems in their legs, so the individual had vein surgery to "fix" the situation and it did nothing to help their RLS. Others have said that it helped, but did not eliminate their RLS.

We also need to keep in mind that even though the RLS name says "Legs", it can hit any voluntary muscle group in the body, especially the arms, hands and abdominals but occasionally the neck and even the genitals. Dr Ondo at Houston Methodist has regularly said that the name needs to be changed to "Restless Limb Syndrome" to better reflect this reality. There have also been studies of nerve conduction in the arms of RLS patients that have shown abnormalities and the vein theory doesn't explain why so many people with moderate RLS see their symptoms disappear after an iron IV infusion that increases their ferritin level from below 50 to over 300.

Therefore, we all need to keep in mind the statement that "we are all an experiment of one". What works for one person can be an utter failure for the next. The treatments recommended by the Mayo Clinic document and the recent AASM guidelines simply report on the approaches that are more frequently successful than others.

You might be interested about Jacqueline Lagacé’s book: How Nutrition and Diet Can Fight Chronic Inflammatory Disease.
Jacqueline Lagacé was a professor and researcher specializing in immunology and microbiology, and directed a research laboratory at the University of Montreal for 17 years.
The book is 10 years old but gives a lot of scientific details on topics like gluten.

I had significant improvements by following the Wahls diet. It is very low in carbohydrates, and though I no longer follow that part of it (it seems my body needs more carbs than the diet allows when I'm doing a lot of hard workouts), I still try to follow its other recommendations. I'm not eating the volume of vegetables that she requires, anymore, but my diet is still heavy on her three kinds of vegetables.

I keep thinking nowadays that I should go all-out with an anti-inflammatory diet, but I can't convince myself that I could be being harmed by tomatoes, potatoes, bananas or oranges.

Nutrition is a key component of good health, no matter what particular diet you follow. Besides making sure you get enough macro- and micro-nutrients, the most important thing you can do is probably avoiding non-foods that masquerade as food (e.g. heavily processed stuff, hydrogenated oils, ...).

I reduced my meds from 18-21 mg of hydromorph contin to 9 mg, with the only change I made being diet. It took about 2 years, reducing a little bit every few months. Then I plateaued.

Since then, I've reduced to 6 mg. I did that temporarily with an iron infusion in 2019; I was unable to follow up with another infusion because of covid. Then I did it permanently (I hope) by using a brain re-training protocol. I don't know if it helped the WED/RLS itself, or if it mainly dealt with secondary anxiety and depression that was keeping me in a vicious cycle, making the WED worse which made the anxiety worse, etc. But I was able to reduce meds a bit. I seem to have reached a plateau with that method, now, as well.

I keep doing the brain re-training, because I like life so much better now