This is definitely a big deal for me, the fact that unless there is money to be made from the results of research, there will be no funding for it. Like, they don't really care about health; what they care about is how much money they can make off of the lack thereof. So -- instead of researching WHY we have triggers, they research what drug they can sell to us to alleviate the symptoms if we can't find and eliminate the triggers on our own. So we are stuck trying to eliminate triggers and taking drugs. Frankly, it just pisses me off and convinces me that there really is no caring, just greed. One would think that government-funded research would be the first line of defense instead of its putting laws in place to protect drug companies from being sued. But nope. that's not the system in place. (I'm in the US.) Especially those who have had RLS life-long, where is the research for the cause of that? It's not caused by a deficiency of a pharmaceutical drug, and research ALWAYS is focused on "what is the lowest-level symptom we can find that we can apply a drug to?" and then they label that cause.
That said, I stubbornly was refusing to give up a part of my breakfast that I was pretty sure was a trigger. In the middle 2002 I was given a fluoroquinolone antibiotic (three, ten-day rounds of 500mg cipro for diarrhea that was caused by mold exposure, NOT by bacteria) that wrecked my intestinal microbiome. Ever since then, I have had RLS in varying intensities, from extreme to being manageable just by avoiding food triggers. Being in mold exposure absolutely definitely causes RLS, and being given an FQ antibiotic definitely sets up the scenario for making it worse. Both of these causes major havoc in the intestinal microbiome.
At its height in the middle 2000s (before I knew I was in mold exposure) I was taking up to 3600mg gabapentin at bedtime or it was zero sleep. Even with that astronomical amount of gabapentin, sleep was nothing approaching normal. I used to laugh when a doctor would suggest a sleep routine, as if a bad sleep routine were the cause of RLS. I was in my middle 60s at the time, and my sleep routine had not changed in decades.
Since I got out of mold and recovered from that, which took until about 2014, I haven't had very much of a problem UNLESS I ate lectins. Dr. Gundry has published a cookbook for a diet based on avoiding lectins, but because of mast cell activation problems also caused by the mold exposure, I can't eat many things that are allowed on his diet, such as ferments and high histamine foods. It is like being between several rocks and several hard places at the same time. I've had to design my own diet of no lectins, low histamine foods, and no ferments (which have both mold and histamine.)
So back to what this post is theoretically about, I was for a while vastly enjoying a breakfast of pastured organic eggs scrambled with chopped scallions, cooked in ghee, nestled in sprouted organic corn tortillas. Very tasty. BUT there was corn (a lectin-containing grain) and the RLS was back to making me crazy. The only OTC thing that worked was a pretty high dose of red vein kratom (legal here in my state) but it also woke me up -- so the legs would stop jumping off the bed but I would still not get any sleep.
So finally I quite eating the corn tortillas for breakfast and the RLS has subsided considerably (immediately, like the same night) to the point where I only have to take an antihistamine to make sleep possible. (Yes I know some antihistamines make RLS worse, but some also help, possibly because I have the MCAS going on.)
It just pisses me off first that research is based on developing drugs for symptoms instead of where it should be, which is finding causes ( once again, RLS is not "caused" by a lack of a pharmaceutical drug, no matter how far down into the symptom well they look
that so many of these drugs, like the FQs, are incredibly harmful and so many people have to be harmed before that is admitted; and then nothing is done to help those affected for the same reason -- research is only for more drugs.
Ok, rant off. I keep telling people to try simply not eating for one or two days, drinking only distilled water, and see what happens to your RLS. You may find you have food triggers that you have no idea are causal, and you may be able to get substantial relief through that process of finding there are things you are ingesting that you can eliminate.
NTX100 Tonic Motor Activation System
help for a friend
Appointment with Robin Fackrell
UPDATE: RLS, magnesium, calcium and hard water
