I've had RLS for years and have been on Ropinirole for several years. 3 Weeks ago, I tested positive for Covid. I had mild symptoms - a sore throat, cough, slight wheeziness and fatigue. Other than ongoing tiredness and a cough - pretty common - I'm over it and have had 2 negative tests.
The thing I've noticed is that my RLS seems a lot better. It's not gone, and to be honest, I've never slept well, aside from RLS, but I can now get a reasonable night's sleep with no medication.
Has anyone else experienced this?
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Mattly
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Have you stopped the Ropinirole? You say you now get a reasonable night's sleep with no medication?I had Covid on 6 March and for the first week my RLS was fine.
However, I had Paxlovid rebound and the Covid flared up again and I was very ill for another 3 weeks. This time my completely controlled RLS became worse until I tested negative on 6 April.
There have been reports of RLS improving during cold or flu illnesses so you are not alone.
I've not stopped taking the Ropinirole altogether, but I've always taken deliberate, regular "breaks" from it for a few days to prevent augmentation (I've been on it for several years with no augmentation, so this method seems to be working).
My RLS has always gone through cycles of being more and less severe and I take the breaks from medication when it's less severe. This was the case when my covid came, but I've extended the period off medication because my RLS seems to be staying in "less severe" mode. I've taken it just twice in the last 3 weeks, at my normal low dose of 0.5mg.
On your final point, I've noticed this too - If I'm ill with a cold or similar which makes me feel fatigued, my RLS is noticeably better
Your method of taking ropinirole is intriguing. It does seem to keep augmentation at bay. Possibly raising your serum ferritin would help even more. Inflammation from viruses causes a rise in serum ferritin and that could explain why people report reduced RLS when ill with viruses. You might be able to drop all meds completely if you raise iron and ferritin levels.
Covid can make ferritin go up which helps RLS. So that suggests you should get your ferritin tested after the effect from covid wears off. Be sure to wait for that or the ferritin number won't accurately show what your normal is. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. It certainly helped you. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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%. If your transferrin saturation is OK, then if your ferritin is less than 75 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 preferably at night 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. 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 may 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 can interfere 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.
As far as I am aware the rise in Ferritin after inflammation/viruses does not actually relate to iron levels which is what Ferritin is usually checked to test for. It is a rise related to another mechanism.So unless folk in general have got this wrong and it is actual Ferritin rather than iron then the rise in Ferritin is not the cause of the improvement in RLS.
I asked Dr Buchfhurer once if it was known why some illnesses result in an improvement in RLS symptoms as I had noticed it myself and he said no one knew. He thought it might relate to fever but no one had yet researched it though anecdotally people mentioned this effect to him in his clinics
Ferritin is a blood protein that contains iron and is the best measure of iron in the brain. It doesn't matter how it is raised. And for 60% of people with RLS having ferritin higher than 100 improves their RLS. Granted in this case it is only temporary.
Thanks Sue. It doesn’t matter who is correct here as not advice, just theory. But I know that when ferritin is raised due to inflammation it is no longer a reflection of iron stores but is a false figure from which iron levels can’t be extrapolated. We all try to help each other on this site which is good but this a why ferritin is not always a reflection of iron levels - it only is if there is no inflammation about to fool us.
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