Good covid, bad downside.: I have... - Restless Legs Syn...

Restless Legs Syndrome

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Good covid, bad downside.

JakeRLS profile image
9 Replies

I have refractory RLS and have been taking 20 mg of hydrocodone right before bed. The symptoms actually cycle during the year with the colder months coincide with reduced symptoms. A month ago I came down with covid. I was really sick for about a week and it took me another week to test negative. I took no additional meds. The upside was I had no RLS symptoms during the day or the night. It was so blissful it was almost worth having the virus. I thought perhaps the virus killed the RLS enemy. Actually I didn't think that but I was hoping. So as my virus was leaving my RLS came home. A little at a time but it got to be worse than it was before covid. And actually it's worse than it ever has been and I'm lucky to get more than three uninterrupted hours of sleep a night. The rest of the time it's a wrestling match. I'd be curious to hear if any of you have had similar covid relief. But I'm getting ready to go back to the sleep doctor to see what adjustments can be made in the meds. My question is are there any better narcotics to use besides hydrocodone that might handle my problem. FYI my ferritin scores are good and I am on the same pre-covid diet with no new meds.

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JakeRLS
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9 Replies
SueJohnson profile image
SueJohnson

Most COVID-19 patients develop an abnormal inflammatory response to the viral infection, and serum ferritin as a marker of inflammation with the result ferritin increases. This is actually good news because it means you might respond to increasing your ferritin. You said it was normal but what is normal for others is not normal those of us with RLS. What was it?

JakeRLS profile image
JakeRLS in reply toSueJohnson

great analysis, hadn't thought of that. My ferritin level is 318 ng/mL, iron is 94ug/dL, iron binding capacity 29%, iron binding unsaturated 228 u g/dL. I'm also taking iron bisglycinate 25 mg with vitamin C at night.. Sue I just read one of your other responses and I did not stop taking the iron tablet before the blood test. Should I retest? Also last year when I had a flare up my sleep doc. Put me on horizont but after trying it for several months I decided it wasn't working and discontinued it.

SueJohnson profile image
SueJohnson in reply toJakeRLS

Yes I would retake it but wait another 5 weeks since the covid could still have an effect up to 8 weeks later.

Eryl profile image
Eryl in reply toSueJohnson

Shouldn't we be aiming at optimum levels rather than normal levels? Normal is just what's measured in the general population, not what 's needed for the best health.

SueJohnson profile image
SueJohnson in reply toEryl

What are you referring to?

JakeRLS profile image
JakeRLS in reply toSueJohnson

Sue, if the ultimate answer is to change meds, is there a narcotic which would likely give me better results then 15 mg of hydrocodone?

SueJohnson profile image
SueJohnson in reply toJakeRLS

You might want to first try increasing the hydrocodone. The usual effective dose is 20 to 45 mg

JakeRLS profile image
JakeRLS in reply toSueJohnson

Thanks Sue

JakeRLS profile image
JakeRLS

But even if it's still elevated due to covid doesn't that mean the RLS symptoms will likely worsen as the ferritin level decreases? And if that's the case shouldn't I be considering a change in medication?

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