Two nights ago, I had been fighting a migraine when I had a cold flash. That lasted an hour or so. Then suddenly my whole body erupted with restlessness. Unlike the usual progression of restless legs syndrome, where it starts in the legs and moves into the hips and arms, this was a sudden explosion of restlessness that encompassed all the medium to large muscles in my body below my neck.
Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease (WED), is progressive for those who experience it on a regular basis. I have had it since I was about 16, the same age I started getting sleep paralysis. I have had it in my arms, hips, shoulders, and legs. This was the first time my back and glutes were also involved.
So I’ve spent the last 12 hours trying to read the latest research, and I’ve learned several things. This is what we know so far:
Do not take quinine. Not only is it useless, it’s associated with a higher risk of mortality.
You might remember that there was a study that linked people with RLS for more than 10 years and cardiovascular disease. Well, more studies have been done, and it seems that the link is tentative at best, and may not be there at all.
We know there’s a link between severe RLS and migraines, but we have no idea why.
We know it’s got a genetic component. (See video below for more information.)
We know that some people with RLS, especially younger patients, need more iron (they test as anemic), but oral supplementation doesn’t necessarily help symptoms. (See the video below for why.)
We know that treatment to boost dopamine does help with mild to moderate RLS, but that it backfires sooner or later, and makes it worse, at which point the only pills that help are opioids. Good luck getting those.
We know women get it more often than men. 2:1 No clue why.
And we know that it gets worse with age, and that there are higher than expected mortality rates, but we don’t know why for any of the issues except suicide.
Then I found this, which was released today. It shows that even those RLS patients with good blood levels of iron don’t necessarily have that iron in the central nervous system, tissues, and muscles. In other words, the iron does not get transported and absorbed where it is needed. That’s why some RLS sufferers actually have high serum levels of iron, but if cerebrospinal fluid is checked, iron levels are low.
The solution is IV iron infusion (because ingested iron will not get where it needs to be). It’s all in the video. I encourage you all to share this video with your doctor and other sufferers of RLS/WED.