I am convinced that for myself and possibly others like me, that my RLS is a mast cell activation problem. I never had RLS until my 60s when I was living in a house that had a hidden pipe leak and hidden mold. So I don't think mine is genetic. But recently as I have learned about MCAS (mast cell activation syndrome) it has made tremendous sense to me what has happened over the last 20 years. Intensity comes and goes and has to do with foods I react to, that I never had a problem with pre-mold exposure. I am more or less controlling the RLS (which varies in intensity) with mast cell inhibitors. Quercetin 1000mg X 3, if it's bad I take a Zyrtec, and oftentimes a different, four-hour antihistamine.
There is a most excellent web site that will let you educate yourself about mast cells if you think it might apply. There is a quiz you can take that gives you a result of "how bad" is your MCAS. Mine came out as severe. The site (I hope this is allowed) is mastcell360 dot com, and it's a USA site but is by people who have had extreme mast cell problems and found ways of getting relief. It's not one of those sites that tries to get rich off of sick people, because they get it.
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Bernaldi
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Welcome to the forum. You will find lots of help, support and understanding here.
People with MCAS have a higher prevalence of RLS compared to control groups - 40.8%. The common factor is probably inflammation which is known to make RLS worse. Many foods cause inflammation.
Just because you didn't have RLS before doesn't mean you don't have the propensity for it which was brought out by the hidden mold. It could still be genetic. In other words the mold didn't cause your RLS, it was just a trigger for it.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
If the things you are doing do not continue to control your RLS, there are medicines that can completely control it. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
You are sort of preaching to the choir. Almost all that stuff I am aware of and have taken whatever action I can. I'm in the US and am female. I'm also a retired electrical engineer with the well-honed analytic thought processes that go with that education and career. That said, I appreciate any input that may be helpful. I am never going to take a dopamine agonist based on what I have read, even got some Requip from AllDayChemist, and it did nothing anyway. I'm not even sure this is a dopamine problem with me, although I am dopamine deficient. I'm also a performing musician, and at one point I had such horrid stage fright that I would almost faint on stage and would shake so badly I had difficulty holding my instrument. By some miracle I discovered L tyrosine, and found that taking two or three grams of that, 40 minutes before a performance, I had zero stage fright and could be on stage just like everyone else. However, the L tyrosine has no effect on the RLS. Another reason why I think it is, for me, a mast cell activation problem and I take that approach to dealing with it, currently.
I'll add another theory that looks good to me. If I eat nothing (zero) except water during the day, I have no RLS symptoms that night and sleep very well. It depends entirely on what I eat how bad the RLS is. My symptoms also tend to fall off by about 4am if I didn't eat past about 6PM -- and to me that mirrors the progress of the food through the digestive tract. If there is "leaky gut," then my mast cell theory is hand in hand with things that get into the circulatory system, and then to the brain, that should not be there.
I keep seeing that people have triggers, and the focus seems to be on finding the triggers. My question is, WHY do people have triggers? What is wrong that the things I ate for decades without a problem, now suddenly they are "triggers?" What happened? Why isn't research focused on that instead of on what drug to take? I'm not saying those who need drugs should not take them; I'm saying that the focus of research is misguided, but I think that about almost all of what we call medicine, that the microscope is focused more and more narrowly on what I would call the search for the root symptom, for which a drug is produces with much hoo-hah and profit, when the direction of search needs to be on true causes of why that root symptom is there.
I think the use of antibiotics, and especially the fluoroquinolones (I have FQAD) have brought about an epidemic of symptomatic illnesses that are sourced from a damaged microbiome, poisons that stay in the body, and a leaky gut. Cipro kills off an entire class of bacteria that are not available in probiotics in the USA, and if that class happens to be necessary for proper digestion and avoidance of leaky gut -- we are killing ourselves with our drugs. Add to that what is considered to be food, especially in the US, that is more chemical soup than food, and even if one can avoid the majority of the chemicals, it has little nutrition. If we would just return to farming practices that produce nutritious and non-poisoned food, we could make such headway. Regenerative agriculture is starting to become better known and applied (read, for example, Dirt to Soil,) but there will be a terrific fight against those who would rather eliminate real food and have us eating manufactured proteins.
Eating nothing works? Maybe that's my problem because so often I go from bed to fridge when my legs give grief. On why food (and booze/caffine) triggers I don't recall reading anything on that but I guess some of the common ones (booze, sugars, caffeine) have a interaction with dopamine.
The many different triggers/reliefs have always intrigued me. Some are mental (distraction), others phyisical, some chemical others biological. But the distraction one in particular.
What I would like to see the focus of research is why I never had RLS until my 60s and concurrently was living in mold and was prescribed huge doses of cipro. I have never been the same, and I'm not living in mold any more. THIS is what needs to be studied, the WHY we get these consequences, instead of what drug do we develop to treat the symptoms. As long as all they do is focus on more and more drugs, we won't get anywhere.
What I have suggested to people but almost none have tried, is you can find out if what you are ingesting is causing the problem. Then of course, hopefully you would start asking why does just eating cause me to have RLS?
I found this out when I was sick with a stomach bug and could not eat. The days I didn't eat, I had zero RLS. Which got me to thinking, why is this? Food? What's wrong here?
So what I suggest is people do a distilled water fast for an entire day, and see what happens with the RLS that night. No change--either what you're ingesting is not causing a problem or you'd need to do a longer fast to find out. If the RLS, like, mine, isn't there or is dramatically reduced, then the quest starts to find out why. If you can find out why and fix that, suddenly you do not need any drugs any more, if you are willing to not eat those things that cause a problem, and then of course it is why do those things cause a problem? Is it the things or is there something wrong with the digestive tract that it apparently is not functioning correctly, and that should be the focus of treatment, not drugs for symptoms.
I'm working on my gut and know I have problems with lectins but only after I had cipro, not before.
Aha and how would you get proof if you don't believe it's possible in the first place because there is no "proof?" Do you want a double blind, peer-reviewed-journal-published study funded by Big Pharma? You are exemplifying the attitude that prevents thinking in new pathways.
You have just proven my point that you won't believe something is true until it has been "proven" to be true, and it won't be studied unless there is profit to be made, whether or not it is true. However, things that are proven to be true were true before they were "proven" to be, so the proving itself does nothing but gather believers.
An example I know of from quite far back in time: A child had an injury to its fingers that damaged the nerves. The child's mother noticed that after the damage, the ends of the fingers didn't wrinkle when they had been in water for some time. But after the nerves healed, the wrinkling came back. The mother reported this to the child's doctor, who instead of saying, "well, that can't be true because there are no papers out there proving it," instead set about documenting it well enough to get the attention of other medical people, and now it is accepted as being a sign that the nerves are healed. But it was true before anyone "proved" it.
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