It's happened again - the improvement when ill

I just have to report again ( sorry for the repetition ) that I've had improvement of my dreadful RLS while suffering from a virus - not gone but just a couple of wake- ups per night which makes such a difference. I only had a mild fever this time but felt rough for 2-3 days.

I so hope someone 'out there' will try to work out the answer to this and change it into treatment. OK, this time I was off my food but at other times this was not the case.

Add in some coffee as per others recent posts and I feel almost human today!

PLEASE all researchers try to look into this.

[LotteM]

Hi Alison, good to report it again. I have taken up the challenge a while ago and use my very linited amount if energy to study RLS. Firstly by getting up to date, as quite a bit has been done and is going in.

I did read about iron homeostasis and that during inflammation or fever extra iron gets released from the bodily stores. That may account for your reduced symptoms. AND it may indicate that you may benefit from iron supplementation and/or infusion.

Getting to know about iron in relation to RLS is my first focal point. When I learn something new, I’ll try to post. But progress is slow, as I only can concentrate for short periods and not too many times a day. Thanks to RLS 😒. Anyway, I lost my job (also RLS) so there are few other distractions.

[Hidden in reply to LotteM]

That is very interesting and your theory could well fit, thank you.

I must try really hard to raise my iron levels. I tend to give up thinking nothing will work that doesn't have significant side effects.

I completely understand what you mean about the inability to concentrate. It is dire isn't it.

I am very fortunate that I managed to keep working till very close to 60. That was at the time I thought that Pregabalin as a wonder drug. There is no way I could work now and feel very sorry that others of you have that big problem.

[Graham3196]

A fairly random thought. Doctor Buchfuhrer, in a brief note on the accuracy of Ferritin measurement, said that an infection or something that causes inflammation can cause a false high ferritin reading for many weeks after the condition has passed. Perhaps whatever causes the high false ferritin measurment is also capable of reducing the RLS symptoms. So high ferritin READING equals low RLS whether the ferritin is really there or not. Too hard for me to make sense of it all so I'll just call it a comment or a riddle and disappear.

Graham

[rls_optimist in reply to Graham3196]

Thanks for reminding us of that, Graham. I now remember coming across that before, including from my own hematologist. However, I think the meaning of "false" here is a temporary rise in ferritin levels that is not a true reflection of the person's normal, lower level when not ill. So it's actually a true reading, but it's only temporary. That would square with Alison's experience.

[Graham3196 in reply to rls_optimist]

Interesting point! Perhaps I have interpreted "false" in the wrong sense. Perhaps its more correct to call it a "non-representative" measurement. Who can we check with?

[rls_optimist in reply to Graham3196]

Try googling for "false ferritin reading inflammation". I found a reference to a paper "Normal Ferritin in a Patient with Iron Deficiency and RLS."

ncbi.nlm.nih.gov/pmc/articl...

In here I found this explanation: "Ferritin is increased in a number of conditions unrelated to iron status. This may cause a falsely normal value in an individual with truly low iron stores."

So the ferritin reading is not false in such a case. Rather, the ferritin gets elevated to normal by some other process such as inflammation, that is unrelated to actual iron levels. So in this case the ferritin reading is true; it's the interpretation of that reading as being a valid measure of iron level that is false.

A better term might be that ferritin alone is insufficiently specific for iron. The article goes on to say that hematologists often use transferrin saturation along with ferritin to provide a more specific test for iron level. "The ratio of serum iron to total iron binding capacity (a.k.a. transferrin saturation) may reveal decreased iron stores in such situations [i.e., inflammation] despite a falsely normal ferritin. Transferrin saturation < 20% is indicative of iron deficiency."

I'm glad you asked the question, because in looking for the answer I learned about why they sometimes test for transferrin saturation. I had heard of it, but didn't know why it's important. Now I'll make sure to ask for that test along with ferritin whenever I get tested in the future.

[Hidden in reply to rls_optimist]

That article is very interesting - not least because I would imagine that the increase in symptoms and earlier in the day start for them reported would surely nowadays usually be interpreted as augmentation on Ropinorole yet when her transferrin saturation increased after taking oral iron her symptoms reduced which then allowed reduction in her dose of Ropinorole!

Also she was taking Setraline!

[Hidden in reply to Graham3196]

It does fit well with the temporary improvement that the inflammation or virus makes more Ferritin appear in the bloodstream ( and so I assume brain ) even though the total body iron stores are not higher.

I wonder if it's actual iron, or ferritin, which is the iron transport protein I think, that is related to RLS symptoms? The way to increase Ferritin in normal circumstances is to raise iron itself and therefore Ferritin as a byproduct of this - but could it be actual Ferritin which has the effect on RLS??

[LotteM in reply to Hidden]

Good question. Recently I came across a paper about hepcidin and RLS. There was some relationship, I think RLS-ers had higher hepcidin, which means lower uptake of iron. But the crucial thing is transfer of the iron to the brain - as far as the current knowledge goes. Don’t know yet whether that goes via ferritin, or transferrin, or something else; need to study.