Supplements, diet

[mackmann]

Anyone who has refractory RLS gotten any significant relief from supplements? If so, what did you take and how much?
How about diet? If so, please explain what yo eliminated or included. My thought is a combination of the two MIGHT help me reduce the 1.00 to 1.25 of Ropinerole and 900 to 1200 of Gabapentin I take.

The plan is to reduce the dosages as much as possible then quit totally with the help of an opioid.

Thanks!

[XenMan]

Oxalate is the cause of my RLS with the short answer of it is the cause, but hasn't eliminated my RLS, just changes it for now until I can get the oxalate out of my system.

There is a list of things to try, with caffeine making a difference for me due to trigger points being less sensitive to create symptoms. At one stage it did nothing but recently made a massive difference with my sleep back to being almost enough from me being the walking dead.

[mackmann]

Thanks for the reply

[badnights]

Taking iron has caused the biggest change for me of any "supplement" I've taken.

And I cut my medication almost in half by switching to whole foods, 6 cups of vegetables per day (a variety including sulfur-containing veg, colored veg, and dark leafy greens), organ meats, cold-water wild fish; NO added sugars, trans fats, hydrogenated fats; LOW carbs, lots of saturated fats, moderate protein. The diet was the Wahl's diet. I don't follow it strictly anymore, so I may be forgetting some key aspects. Oh YES (edited): No gluten, No dairy.

A search (advanced search, gear icon in the top right) for "Wahl" in the subject and "badnights" in the author should turn up my thread.

[iris]

1) Gluten
During a medication-free period in 2020 I had high-intensity RLS for 4-6 hrs/night. In Nov 2020 I read a research paper reporting that ~30% of people with celiac disease also have RLS so I went gluten-free (GF) as an experiment. Within 5 days RLS went to zero. Over the next 2 months GF my RLS bounced around before stabilizing at a 50% reduction (medium intensity for 2-3 hrs/night) that has lasted until now. I do not have CD or any GI issues so the gluten sensitivity re RLS was a surprise. Would love to hear if others experience the same thing.

2) Other foods eliminated
In 2021, I experimented with a series of elimination diets, one at a time (FODMAP, grains, sugar, meat, artificial sweeteners, additives, preservatives, dairy, caffeine, alcohol) and found that minimizing caffeine and dairy reduced RLS by another 25% so I maintained those exclusions.

3) Supplements
I experimented with numerous supplements (B12, folic acid, riboflavin, iron, magnesium, coQ10, ) and did not find that they had any impact. My ferritin levels are normal but I am sure iron makes a different for those with iron deficiencies.

For an unknown reason during the last 2 weeks, my RLS went bonkers so I am considering going back on medication, but I hope to avoid it.

[Polar Bear]

iris, you say your ferritin level is normal. Do you know what your level is? Doctors will accept a reading of 20 as normal but an rls sufferer needs to have a level of around 100. Please check what is your ferritin level.

[iris]

In reply to Polar Bear: My ferritin was tested 3 times over the past 2 years, the first 2 results were 75 and 100, and the third result (after taking iron supplements) was 250.

[Polar Bear]

Great Ferritin levels.

[badnights]

I do not have CD or any GI issues so the gluten sensitivity re RLS was a surprise. Would love to hear if others experience the same thing.

ME! I am not sure if it was cutting out gluten or the other dietary changes I made, but they allowed me to reduce over a period of 2 years from 15-21 mg hydromorph contin to my current level of 9 mg. I haven't been able to get below that

You might consider iron even with those good ferritin levels. The idea seems to be that each person's appropriate ferritin level is specific to that person. Mine is in the 400s now, but if I stop taking iron, my symptoms always get worse 3 or 4 weeks later.

[Frunobulax]

Anyone who has refractory RLS gotten any significant relief from supplements? If so, what did you take and how much?

Vitamin B12 made a huge difference. 1000 micrograms a day, still take it daily (mix of hydroxy- and methylcobalamin). Less pronounced but noticable is vitamin B6 (50mg a day) and biotin (20mg a day). I should say these are the supplements specifically reducing RLS symptoms, I take other supplements that help managing my ME/CFS.

How about diet?

Yes. viewtopic.php?f=20&t=10588

Unfortunately I was only able to reduce my medication (from 30mg Oxycodone a day to 15-20mg, similar to Beths experiences). I see some details different than 3 years ago when I posted this, but the main points of this thread stand, IMO.