I'm testing an hypothesis about RLS and mono today.
Short story, I had mono symptoms for months about two years go. I tested reactive for EBV VCA IgG EIA (mono) twice over a few months period. It eventually got better, but I still get those same symptoms randomly for a few days or a week at a time.
I've got two hypothesis:
1) We all know RLS causes a chronic lack of sleep. This causes havoc on our immune system. Therefore a dormant mono can just go berserk (we pretty all contracted mono as adults and it's always there). I did test very low on white cells over and over again, but my GP couldn't find a cause for this except poor sleep.
2) There is a correlation between getting mono and RLS. Maybe a percentage of the population had a mild RLS, but after getting mono it got worst? I did always have a mild RLS when I was younger and RLS got much worst very quickly after I reached 27, about the same time I started getting mono symptoms.
I feel it's a chicken and egg situation. RLS and mono might be walking hand in hand, happily making our life worst. Anyone had a similar experience?
Just to take this out of the way, I'm on Pregabalin and Methadone. I take Iron every other day. I've tried the lowest possible dose of DA for a few months, it's heaven, then hell. And please don't badger me with nutrition advice, I can't stand it.
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GuillaumeL
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EBV causes Multiple Sclerosis. My RLS is caused by MS scars in the brain and spinal column. So, yes, my RLS is caused by EBV.However, there are several causes of secondary RLS. Most people don't even know they've had EBV. My daughter tested positive for EBV but had no symptoms and she doesn't have RLS.
I definitely think more research is needed on the effects of viruses. Long Covid will cause neurological diseases.
Maybe a billionaire will develop RLS and puts all their money into research.
I'd take what the Medical Medium has to say with a very large grain of salt...
The text below is taken from his website (clearly put there on the orders of the FDA)
"Anthony William, Medical Medium is not a licensed medical doctor, chiropractor, osteopathic physician, naturopathic doctor, nutritionist, pharmacist, psychologist, psychotherapist, or other formally licensed healthcare professional, practitioner or provider of any kind. Anthony William, Medical Medium does not render medical, psychological, or other professional advice or treatment, nor does it provide or prescribe any medical diagnosis, treatment, medication, or remedy."
I had mono at 25. I was tested for everything and after 4 months of badgering the doc gave me a mono test. I tested positive for a very bad case that was on its way out. It took months to get back to full strength.It was roughly 30 years later I had twinges of RLS which did not disturb my sleep this lasted about 10 years. In 2012 it became disruptive following cataract surgery. RLS became progressively worse where I'm on my feet at night more than asleep.
I tried Mirapex and it worked for 6 days. After that I just rode it out. I am trying to avoid any drugs since I have a history of not having sustained relief from anything i ever took.
There is no reason to suffer. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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
Try ferrous bisglycinate (25 to 50mg) one hour before bed on an empty stomach. If it relieves your RLS in one hour, as it does mine, then you must repeat every night. You will absorb just as much of that iron as if you were taking it every 48 hours. If it doesn’t relieve your discomfort and your iron is outside the normal range or at the low end then keep taking the iron anyways to see if raising your ferritin, and not just your serum iron, helps you.
Like BoldMove, I too had severe mono in high school, requiring a very long and unreasonable (to my teenaged brain) bed rest. Then it happened again in college. Very minor PLMS symptoms started the year following college. My RLS did not begin until decades later.
Thanks for posting this. I’ve wondered about the correlation, too. Please keep us apprised of your deductions!
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