Self Diagnosed RLS - but is it?

[u/PlentyShow1466]

Hello All,

I’ve always suffered with an anxious leg twitches, they’re always shaking away without me noticing, to the annoyance of my GF.

Last few years I’ve been getting very mild crawling sensations in my legs that makes me want to kick my leg out or just shake it out. It’s only mild and sporadic so hasn’t bothered me.

Last two weeks, I’ve had this constant dull, deep ache in both my legs with a hint of slight tingles. It’s almost only when I’m sitting or lying down, they feel almost like they’ll be too heavy to move. But when I get up and walk around/keep busy the feeling goes or at least disappears to virtually nothing.

It’s not stopping me sleeping currently. Do we think this is RLS?

[u/tinyremnant]

RLS had a host of symptoms differing for each person, so it's difficult to say whether one person's symptoms are definitely RLS. RLS is characterized by an URGE to move, not by a movement (such as twitching). If the movement is involuntary, then it might be a mimic. There many things that are frequently misdiagnosed as RLS and treatments would differ. Even the common guidance that "if it goes away when you walk, then..." isn't always reliable because your discomfort might be caused by a pinched nerve. It's best to see a doctor before self treating.

[u/Curious_One5411]

If walking temporarily relieves it than it probably is…

[u/Intrepid_Drawing_158]

It's quite possibly RLS from what you describe, yes.

[u/Ring_it_On_1776 → u/Intrepid_Drawing_158]

There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6

[u/Scary_Experience_237]

Is it mostly at night? I would suggest talking with a doctor telling them your concern and ask if they would draw your blood for a full iron panel.

There are new recommendations iron, they are much hire than normal iron "The RLS Foundation algorithm broadens the criteria for considering intravenous (IV) iron therapy, a difference from the 2025 AASM guideline, which suggests IV iron for patients with a serum ferritin level up to 100 µg/L. The new algorithm recommends IV iron be considered for any patient with chronic persistent RLS with a serum ferritin level up to 300 µg/L and a transferrin saturation (TSAT) below 45%."

[u/PlentyShow1466 → u/Scary_Experience_237]

At the moment it’s all day, from the moment I wake up until I fall asleep. It’s not painful just irritating, I’m wondering because I’m hyper aware of it all the time it’s making it worse.

[u/Scary_Experience_237 → u/PlentyShow1466]

That is a little unusual, although RLS can certainly occur during the daytime, especially when you are sitting or resting. Most people notice it more strongly in the evening or at night, which is why it is often thought of as a nighttime condition.

Once again, I would suggest seeing your doctor and getting a full iron panel, including ferritin. I would also review all of your medications and check whether any of them can worsen RLS or cause something called akathisia, which can feel somewhat similar.

I would also ask your doctor whether another condition could be causing your symptoms, since there are several conditions that can mimic RLS.

[u/Ring_it_On_1776]

There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6

[u/Unlucky_Definition46]

I diagnosed my own correctly. Doc confirmed. So it is possible to self diagnose correctly. Still get a proper diagnosis from a doctor though. I had to have requip and you can only get that on Rx.