RLS and recently diagnosed

[Gordi2018]

Hi , so glad I found this site and it's the first time I have posted . I recently had a sleep study ( as was getting daily headaches and feeling extremely tired during the day ) it diagnosed RLS . I didn't even know I had it but apparently during the study my Restless legs woke me 100+ times ? I knew I was a"restless " sleeper but didn't even realise I move my legs so much asleep ? I am now on treatment which helps me sleep and feel more refreshed the next day. Anyone out there with a similar experience ?

[Madlegs1]

Rls doesnt wake you up- it just prevents sleep.

I suspect you have been misdiagnosed, and that in fact you have a Periodic Limb Movement Disorder. That fits exactly what you describe. Google it- PLMD. And ask for your money back from whoever tested you😜

[Hidden in reply to Madlegs1]

my restless legs do wake me up over and over again. i can't get to sleep when it's present and then do and then i'm awake again thrashing about and have to get up as there's no point staying in bed. then i have to go through the process of trying to switch it off again by pacing, hot bath, puzzles, more recently coffee

[Madlegs1 in reply to Hidden]

It's possible to have both.

[Hidden in reply to Madlegs1]

yes, that's what I thought. but i'm sure it's my restless legs that wake me with that very distinctive inability to keep still. i've no idea if i also have PLMD

[Madlegs1 in reply to Hidden]

It could be a combination of both. They are working in concert with each other just to keep you on your toesies.

(See how I worked that in🙊)

All the best, Alison. Keep strong.

[Hidden in reply to Madlegs1]

Thanks and you keep strong too.

Here I am up for the 1st pace about of the night!

[Madlegs1 in reply to Hidden]

That's a shame. I know you are a regular here and expect you have gone through all the suggestions proffered here.- avoiding triggers, keeping diary, sleep hygeine and so on.

I have found ,often, that I wake up a little hangry at 3or 4 in the morning. I go to the kitchen and make up a milky hot drink with cinnamon and turmeric ( half teaspoon or less of each) and teaspoon of honey. Sip slowly. If I'm in pain I will add a dash of cayenne powder. I used to grate in nutmeg- which was delicious, but I found it kept me awake worse than before.

I don't know if perceived hunger is an rls trigger, but it certainly affects me adversely.

Mind yourself.

[Hidden in reply to Madlegs1]

Thank you. I often wake and end up having a snack but can't decide if it's a sort of autopilot or really needed! I have to watch I don't end up with a sweet biscuit though! My latest is a small cup if coffee which someone here suggested and I swear that works!

You take care too. We have to look after ourselves an each other

[Hidden]

Madlegs1 is right, that's PLMD. I had the same symptoms as you and got the same diagnosis. Some people with RLS also have PLMD, and some with PLMD also have a RLS (I get it sometimes), but all people don't necessarily have both. It took a long time for me to find out what was causing my daytime fatigue because although I had painful legs in the morning I didn't have 'restless' legs - and PLMD is even less known about than RLS.

Really, really pleased to hear meds have given you relief and you are feeling refreshed. Can I ask what you are on?

[Gordi2018 in reply to Hidden]

Thanks for your replies . Sorry I was diagnosed with PLMD not RLS . Getting them confused as I'm on a drug that treats both . Am on sifrol 0.25mg . That made me really nauseas so take half a tab as of yesterday . This is all a new journey for me so really appreciate your stories .

[Hidden in reply to Gordi2018]

Yes, the treatments are the same - so it doesn't really matter which we call it! But, as you found, if you have PLMD you don't necessarily know it because it happens when you are sleeping. Sifrol is a dopamine agonist, so I hope your clinician made you aware of the risks including augmentation (PLMD getting worse). You need to keep the dose as low as possible to lessen the risk.

Most people on here would probably be quite envious that you (quite quickly I assume from your post) found a single med that is working. Long may it last!

Worth getting your ferritin (iron storage) level checked if not already done. Needs to be in excess of 100 or even 200. For some people, resolving ferritin levels can resolve the condition without any further meds.

I did that, tried an anti-convulstant (pregabalin), a dopamine agonist (ropinirole), melatonin, codeine - none of which relieved my symptoms. I have just started a dopamine agonist patch (neupro). So far less side effects than from the ropinirole, I feel a bit wired during the day, and (after not sleeping at all for the first couple of nights) am experiencing fewer arousals. But still not waking up feeling refreshed, so suspect my legs are still not under control.

[Gordi2018 in reply to Hidden]

No neuro didn't mention anything about augmentation ? I've just googled it as had never heard about it ?

[Hidden in reply to Gordi2018]

Oh dear, welcome to the RLS/PLMD world of having to know more than your consultant does because what they know is minimal and out of date. You will see lots of posts on here on this topic (rkatt's recent one as an example). And there is an inherent power imbalance that makes it hard to advocate for yourself with a consultant. At my last appointment I made what I thought was a very clear statement that I did not want to try another dopamine agonist (DA) but what did I walk out with - a neupro patch (a DA).

Find out as much as you can about augmentation so that you recognise the signs if it begins to happen. Whilst in the early days of treatment finding the lowest effective dose can require upping the starting dose, if you find a dose that works but then, say, in 12 months time your symptoms return this could be augmentation. But you can bet your neurologist would up the dose of Prami, which would make augmentation even worse.

If you type 'augmentation rls' in the search box on here you will find posts about people's experiences.

This webpage has a basic outline of augmentation rls-uk.org/augmentation-reb...

I suspect for PLMD it would be harder to recognise augmentation other than by a return of unrefreshing sleep. Although, without meaning to alarm you, I experience involuntary leg movements when I am awake as well.

[Gordi2018 in reply to Hidden]

Thanks for your reply . Useful info

[Jobug in reply to Hidden]

I have involuntary leg movements while awake sometimes too. Almost like muscle spasms, but different. Gotten worse as time has gone on.

[Parky1949]

I was diagnosed with RLS through a sleep study. I was given a dopamine based medication by the doctor, this started 10 years of undiagnosed augmentation, I had to tell the doctors what was occurring. Go find a good neurologist experienced with RLS. GP’s and pulmonary doctors didn’t have a clue in my case.

[123098]

Yes I have restless body it's awful so glad you are having treatment

[Jobug]

I have RLS and don't sleep well at all. When I have a particularly bad night, all my sheets and blankets are kicked down to the end of the bed (happens a lot). I haven't been prescribed anything for the RLS, but I am going to have a sleep study in a few weeks which will confirm the diagnosis. I am always tired and almost always have headaches if not migraines.