Mast cells and RLS

[Bernaldi]

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.

[SueJohnson]

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.

[Bernaldi in reply to SueJohnson]

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.

[grassgree]

Thanks for posting. It is interesting to hear about the various different triggers that people have discovered on their own.