Evening annoyance

[Knittingasweater]

Why is it RLS symptoms for me are mainly only in the evening ? I can nap all day and nothing , as soon as 8 pm hits I’m stretching and shaking my legs.

[Madlegs1]

Possibly points to iron deficiency. Dopamine levels are lower in the evening and if you don't have enough ferritin, then the jitters come a knockin on your door!😩

You could get a serum ferritin blood test, if the result is under 50 to 100, then you could look at iron supplements.

Only do this under medical supervision.

Come back here if you know your figures.

Cheers.

Ps -- rls is generally an evening condition. That is one of the qualifications.🧐

[Hidden]

One of the key features of RLS, in fact one of the diagnostic criteria is that it only occurs or is worst in the evening.

Some people do have symptoms earlier in the day, but probably not as intensely.

If someone did have consistent symptoms equally throughout the day, you'd suspect it wasn't RLS at all.

As madlegs says, this is because RLS is thought to be a dopamine dysfunction and dopamine levels are lower at night.

It's also true that your RLS may be affected by a low ferritin level i.e. less than 50mcg/L.. Up to 50% of people can benefit from raising it to at least 100mcg/L.

Here's a link to an article on treating RLS which is quite informative.

uptodate.com/contents/treat...

[dklohrey in reply to Hidden]

Its always good to check on the side effects of other medications a person might be taking. I take Metoprolol Succinate due to high blood pressure and heart palpitations. I recently discovered that this drug can interfere with dopamine production, so I stopped taking it at night and now take it in the morning. I now find it easier to fall asleep at night.

[Hidden in reply to dklohrey]

We are continually learning.

[JakeRLS]

I'm in the same boat. For me it corresponds to a period when I'm trying to relax. If I get annoyed enough with the legs, I get up and do something physical (or oddly, play a game requiring intense thought) , and the legs subside.

[Hidden in reply to JakeRLS]

That fits the diagnostic criteria exactly. RLS symptoms occur when you try to relax, are relieved when you move and occur mainly at night.

All those mean it's RLS not something else.

If you only got symptoms when you were doing something and not when you were relaxing, or they happened whether you were moving or not, then it is unlikely it would be RLS. It's more likely to be something else.

It's good to know this, since sometimes I think if doctors can't explain why certain symptoms are happening and there's no sign of any neurological condition, they say it's RLS. There have been people posting here who have been told they have RLS by a doctor, when it's clear that they haven't.

You can tell they haven't because their symptoms don't fit the 4 main criteria.

1 unpleasant sensation and urge to move.

2 occurs mainly when trying to relax

3 is relieved by moving

4 occurs mainly at night.

You have to experience ALL 4.

Good to know that you DO have RLS, even if it's not good to have it,

It's always better, I think to know what exactly's wrong with you than only know somethings wrong, but not know what it is.

Worse still, to be told you have RLS when you don't!

[JakeRLS in reply to Hidden]

I agree, it's always better to put a name on it, that way I know who to curse

[robert1957 in reply to JakeRLS]

Yes I agree not good if they put a name on it but don’t know what causes it or how to cure it

[JakeRLS in reply to robert1957]

and the name for not knowing is Idiopathic , which of course Rls is (unless I missed something). Actually, I'm not sure the doctors I've been seeing (sleep doctors) are really that familiar with the condition. When I reported developing some unusual symptoms, they said it wasn't RLS related. But I see others on this site reporting the same symptoms. So, I conclude my doctors don't know RLS like I wish they did.

[Knittingasweater in reply to Hidden]

I agree with this.Ive noticed some posts don’t sound like RLS, I meet all of the criteria , but have never been diagnosed.

[Hidden in reply to Knittingasweater]

It's normally not a good idea to self diagnose, but if you r symptoms fit the criteria then you may be quite right.

If you haven't been diagnosed then I presume you haven't had any tests or been prescribed any treatment.

This isn't necessary unless your RLS becomes so severe that it's damaging your quality of life. This may be by causing you serious discomfort in the evenings, by preventing you from doing things that people would expect to be able to do, e.g. going for an evening meal in a restaurant or causing you insomnia. If these happen every day, then it is severe.

However, if it gets that severe, then it may be worth seeing a doctor to at least get some tests for any deficiencies i.e. ferritin (iron), vitamin B12 and vitamin D.

It may be that you've already found things which help lessen your symptoms, but if not you may find quite a few sensible non pharmacological remedies suggested on this site. You have already had some good replies about iron and diet.

There are also some other good sources of information about some non pharmacological remedies. The link below gives a good overview of RLS treatment written by RLS specialists.

uptodate.com/contents/treat...

[Eryl]

Could be that the trigger for your rls is in the food that you're eating. Keeping a comprehensive food diary is the best way to track it down. You must include everything, even condiments, ass I found that one of my triggers was an artificial food additive used in wet foods like sauces, dips and margarine. Another is sugar.

[Alex2308 in reply to Eryl]

I tried to exclude any food trigger by 5 days fasting with water only. My RLS had never been worse.

[Eryl in reply to Alex2308]

We're all different. If we were all the same, there would only be one solution, I'm just suggesting what works for me.

[Alex2308 in reply to Eryl]

Yes, sure, and our triggers may change too which makes it even more complicated.

[sudokufan in reply to Alex2308]

My goodness that's impressive! You have great resolve to do that. Results interesting. Best wishes.

[robert1957]

Heavy metals in your brain .durning the day you and brain are active when you relex in the evening a different part of your brain comes into play if you have heavy metal deposits in that part of your brain they cause havoc sending diverted messages to the wrong place in your case your legs

[Hidden in reply to robert1957]

You may be right, but it's more a matter of having the "right" metals and having them in the right quantities.

The metal iron is the most significant one in RLS. "Brain Iron Deficiency", a lack of iron is associated with RLS and raising brain iron levels can relieve RLS.

On the other hand too much iron in the brain, "iron overload" can have serious bad consequences.

However since the direct cause of RLS symptoms is a dysfunction of at least two neurotransmitters, e.g. dopamine and glutamate, in the nervous system, iron, or other metals only have an indirect effect.

The main reason that RLS is worse at night is because the level of dopamine in the brain rises and falls rhythmically over (normally) a 24 hour cycle and it's at its lowest at night.

The level of iron doesn't vary over the day and isn't related to whether you relax or not.

It's true that excessive amounts of heavy metals in the brain can cause problems e.g. lead, mercury, uranium etc, but the problems will vary in scale, timing and symptoms depending on what the metal is.

[Ert223]

That is how mine started afternoon and then by bedtime it was out of control.

Now I have to takes meds every 4 hours or so. It is only in the calves...hopes

it stays there.

[lorrinet]

I never have RLS in the morning, but if I try to rest, go to the theatre or travel in the afternoon, it does start at around 2.30, though not as furiously as evening and night, when it begins as soon as I sit down, between 6 & 7.

[Hidden in reply to lorrinet]

This is a typical pattern for RLS, i.e. worse in the evening.

Since you mention you can get symptoms earlier, I wonder if this has always been the case or if originally you only got it in the evenings and then it crept earlier.

Furthermore, if it has crept earlier and you are taking a dopamine agonist for your RLS, i.e. pramipexole, ropinirole or rotigotine, then you may be suffering augmentation.

I believe there may be a lot of people out there who suffer RLS, don't recognise what it is and/or never seek advice or realise there are effective treatments available. Which is a shame.

I was one if them until my symptoms got so severe it was causing major problems.

Furthermore, there amy be a lot of people, like me, who have been prescribed a dopamine agonist without being warned that these drugs can lead to augmentation.

[lorrinet in reply to Hidden]

My RLS began in earnest when I was 26 and pregnant and has never stopped. I am now 70, and I've had earlier symptoms for a long time. I remember going to the cinema to watch 'Jonathon Livingstone Seagull' (!) one afternoon and having to leave because I was starting to thrash around, similar to my evening experience. I can sit and have a cup of tea quite peacefully, or sit at my laptop, but anything which means sitting very still for a length of time will bring it on. As soon as I move around I'm fine.

I have taken opiates for the best part of 20 years, and although these days I am up every night at around 3 - 4am for my last, smaller dose, they have given me as normal a life as is possible with RLS and I am extremely grateful to the RLS consultant who told my GP to let me have them. Before that I bought cannabis from dealers, which enabled me to complete my degree in Illustration, without it I would have been too exhausted to continue (very expensive, that degree!). When going anywhere in the afternoon I can take a smaller dose than I need in the evening and night.

[Hidden in reply to lorrinet]

Good to hear that despite some limitations you appear to be coping with your RLS.

It doesn't appear you have suffered augmentation, which I envy you.