Not sure of other people's experiences, but after getting my first AstraZeneca jag for Covid 19 I had a full three weeks with absolutely no RLS symptoms. It was heaven but unfortunately RLS has comeback with vengeance, but boy did I enjoy that three weeks. I read on 4 March that someone in Seattle had the same experience with the Modera jag.
Possible hint towards a cure??
John
Hi John, maybe it has something to do with the activation of the immune system. Quite a few of is have reported a remission of RLS symptoms during a proper flu (thus not a mere cold). And I have experienced the same - with the flu, haven't yet had a vaccination.
It has been and is an interesting observation though, I agree with you. It may give some pointers. One thing that comes to mind is that something changes in the iron system; during inflammation (=also activation of the immune system) often ferritin levels are increased. Maybe the inflammation / activation of the immune system makes iron get into the brain more easily? Just a thought,....
In general I think the scientists working on RLS should do more with observations made by many patients. But not many scientist are working on the mechanism and causes of RLS anyway.
Thanks LotteM.Looks like we shouldn’t avoid the flu after all!
I have found three more cases like mine on the Sleep Review Mag web site. The more and more the greater likelihood that someone will investigate and maybe develop something to give us relief from this form of torture.
John
Hello,I hope the relief of symptoms lasts I had the AZ 1st jab 3 weeks ago but it had no effect on my legs. I did have a bad reaction to the vaccine though and was in bed for 3 days . Worried about having 2nd jab!
Inflammation is a known factor in RLS, but not directly a cause. If the vaccine causes any inflammation by stimulating the immune system then it could affect RLS.
Unfortunately, inflammation makes RLS worse, not better.
Theoretically ANTI-inflammatory agents could help relieve RLS, but it's not really feasible to take them long term.
What's happened in your case will probably remain a mystery, but it's always good that people share their experiences.
Thanks. Three more cases found on Sleep Review Mag web site. So I’m not alone. Plus new Seoul Uni study identifying a bio marker that cause RLS.Should lead to more accurate diagnosis and hopefully the development of therapeutic drugs.
John
I am not aware that any anti inflammatory agents help RLS. That would be a great & simple solution if they did. Many people with very unpleasant inflammatory conditions take them long term if they need to. There are risks of course but some conditions justify that calculated risk especially with a fully informed patient.I would happily take them at least Intermittently if they were demonstrated to help. As far as I know they haven’t been though some may not have been trialed
May I ask what theory are you referring to which suggests they might help and what version of anti inflammatories did you have in mind?
See my reply to you in Boldgirl145's post
Further, apologies if what I've written implied that anti-inflammatories can be a treatment for RLS generally.
I have read that NSAIDS can be useful in controlling mild RLS symptoms. I'm afraid I haven't kept the reference.
Logically if anybody has been diagnosed with an inflammatory condition and also has RLS then presumably they will be treated for the inflammatory condition. Whatever that treatment may be, not necessarily anti-inflammatories.
It's possible that where someone who hasn't been diagnosed with any inflammatory condition may have sub-clinical inflammation e.g. due to diet. This might explain why it has been found that a NSAID can help.
Certainly, if anybody with RLS has no signs of inflammation at all, then it's unlikely that an anti-inflammatory will be of any value whatsoever.
There is then the additonal issue that long term use of anti-inflammatories such as NSAIDS or steroids is not recommended where there is no inflammation.
I hope that clarifies things.
I think the main things about this site are to pass on our factual knowledge and experience and sympathy and to air theories if we have any which might help in future research but also to hope all including researchers will keep an open mind as ‘they’ certainly haven’t found the answer we all desperately crave yet. I think it is also important to make it clear what are facts and what are theories so we don’t confuse anyone who is asking for advice and also direct people back to their medical professionals if appropriate.I am very happy to have my views challenged by anyone.
Actually I’d quite like it if some/many would summarise their view of how the site best aims to work.
I have learnt a lot from many posts and
links & disagreed with some assumptions as well.
HI, I quite agree with you. That's a good summary of what this site aims to do I think.
I also agree that it's perhaps ideal for members to differentiate between theories and facts.
It does appear as if some members present theories as facts and I may be guilty of that myself sometimes. I shall be more careful in future.
Quite a proportion of what members post I think is neither experience, fact or theory but simply information or possibilities, probabilties or likelihoods or even just jokes, (depending on your sense of humour). In which case perhaps this should be made clear too.
I also note that a significant number of members express opinions as facts, apparently without any foundation. Some offer misinformation, which is some cases could be interpreted as dangerous. This would appear to be more serious.
A possible problem is that it's not always possible to distinguish between theories and fact. One theory that recurs on this site is the theory that taking potassium supplements can improve RLS, generally. Most times a study carried in India is quoted in which a limited number of patients were given potassium citrate and after a fairly short while ALL of them claimed their symptoms had disppeared.
This quoted as proof of fact.
It does appear as if the connection between inflammation and RLS is a theory. However, there seems to be some evidence that supports this theory, so it might be a fact. The problem there is, at what point does a theory become a fact.
Overall, I imagine that most members aren't interested or impressed by this level of sophistry, they just write what they want.
It's my opinion then that it doesn't really matter what's written. The exceptions being that malicious intent, incitement to violence or self harm, etc aren't acceptable.
There's ample warnings about seeking medical advice and people are free to make their own choices about whether they accept what somebody's writing or not.
I find the forum rules quite a good guide in deciding what and what not to write.
e.g.
" If you wish to discuss a concern with a specific person, please message them privately and not in a public capacity."
" Posts should never be used to 'have a go' at someone else. "
"we should all be allowed a voice, to express an opinion in a safe place"
" I have noticed a few people trying to circumnavigate the 'no names' rule by putting up statements which clearly are directed at particular individuals but which are often poorly disguised as something else. Please, let's stop this. "
Thanks. That does make a lot of sense and I must say I don’t think I had seen the actual rules! One day a few years ago the site just popped up on my emails ....... big brother ( or google ) somehow watching me & must have seen either a comment on an email or maybe a search? Slightly spooky actually but I’m not sorry I found it.Not sure how anyone else found it.
I suppose I feel a big responsibility not to give any at all controversial advice or info as I was a dr so folk might take it as the gospel so I’m scared of misinforming but I’ve also seen in my time many breakthroughs as a result of open minds.
I respect you for feeling responsible.
I'd like to think I feel a responsibility to get things right too.
Personally, I don't think I've ever revealed my background publicly, but may have told one or two members privately.
Usually if people ask me directly, I just ignore it.
This may make it easier for me to make mistakes, but they're not intentional.
Thank you for being so honest
I was hoping the same would happen to me after AZ vaccine but sadly not.!I have had that effect with a fever though & I’ve been told by Dr Bruckfhurer direct that they have had similar anecdotes from his clinics. llke many I so wish the researchers would look into this. When Dr B replied he said no one knew what the mechanism was. Who & how can we lobby?
I hope so , I’ve had my shots but no such luck. I’m glad you got 3 weeks free of rls .
Thanks Runedrum26 - much appreciated. and well done Alison - good posts. Hope this link works - more cases of RLS relief from Moderna covid jag -
peoplespharmacy.com/article...
There are more cases daily being reported so I hope this grows into something worth investigating and getting us the help and relief we so desperately need.
John
I agree with you with all my heart .
I got just one day and evening up ti 11-00 from any RLS after my first AstraZeneca vaccine, and some mild symptoms, it was the next day when that happened. Just had my second jab on Tuesday, and i had no side effects at all not even a little relief from my RLS this time round
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