Is this RLS?

[Wispymisty]

Good morning

I'm wanting to ask a quick question about RLS.

I have fibromyalgia, b12 deficiency and probable thyroid issues but recently have been experiencing strange fizzing/trembling feelings in my legs and up my back. It can be there all day but is obviously worse of an evening and when in bed at night. My question though is whether it could be RLS or not as I don't get the feeling that moving would relieve it, it just feels as if I'm laid on a vibration plate orn similar and that I'd experience it whatever position I was in.

Does that still sound like RLS, all the descriptions of symptoms I've found so far seem to describe the urge to move and that isn't part of my experience.

Thanks in advance

Wispymisty

[MumofSam]

Hi Wispymisty

What you’re describing doesn’t sound like RLS. The overwhelming urge to move the affected limb and the resultant relief, albeit temporary, is perry much the most important deciding factor for diagnosing RLS. So if you’re not experiencing that it can’t be RLS.

I’m not a doctor but would suspect what you’re experiencing is linked to your existing conditions. You probably notice it more at night because you have less distractions. I’m sure your GP would be able to help.

Good luck.

[Wispymisty in reply to MumofSam]

Thank you,That's what I thought really, but I know with fibro etc what you can find about symptoms online doesn't always echo what people actually experience with a condition.

I've decided to speak to my GP tomorrow as I have some blood tests due to see if they want to add anything extra. I'm thinking it could be b12 related - which would probably be the easiest to deal with too.

Thanks again

[Hidden]

Hello.

Strictly speaking, the principal defining characteristic of RLS is the urge to move. In which case it doesn't sound as if you do have RLS.

However, I do recall that when I first started to notice my RLS when it was very mild, I did notice the sensations first before I developed the urge to move. Later, and to this day, whenever I get symptoms, they very quickly go beyond a mere urge to move, but to actual movements which I cannot control.

These are possibly two ends of the same continuum.

In addition, it's not position that relieves the symptoms of RLS, it's activity i.e. moving. Symptoms occur whenever sitting or lying down and relief comes from getting up and walking. It's not like a discomfort that's relieved by changing position, it's relieved only by continuous moving.

So it is possible you're in the early stages of RLS.

Fibro has some association, as a neuro-muscular disorder, with RLS and both thyroid problems and vitamin B12 deficiency can exacerbate RLS.

It's possible then that if your thyroid is corrected and any vit B12 deficiency corrected then your symptoms may fade.

In addition if you take an antidepressant such as amitriptyline for your fibro, this could also be contributing to any RLS-like symptoms. In which case you could discuss with your GP switching to gabapentin or pregabalin.

Iron deficiency is a major causative factor in RLS, so you might ask your GP for blood tests for haemoglobin and ferritin. If anybody with RLS has a ferritin level of less than 75ug/L then they may benefit from an oral iron supplement.

I can't say for certain that you don't have RLS or say you do. The 5th criteria for RLS is that the symptoms can't be explained by anything else.

It's up to your GP to come up with any other expanation if there is one.

[Wispymisty in reply to Hidden]

Thank you for your reply. It makes a lot of sense. I hadn't thought about the iron deficiency side of things but I am regularly diagnosed with low iron stores that don't correct easily.Hoping to speak to a GP tomorrow 🤞

[Robynasmith in reply to Wispymisty]

I have fibro also and along with it Raynaud’s phenomenon It’s common to have both my Raynauds started with tingling which went on to become numbness

So maybe it’s that

[Wispymisty in reply to Robynasmith]

Thanks for your reply Robyn

I have Raynauds too and agree about the tingling, it's not nice is it?

This though is more like a vibration, really difficult to describe but it's almost like I'm sitting on a vibration plate and the sensation is running through me, very odd.

I spoke to a GP yesterday and she has agreed to do a complete run of bloods next week to see if there's anything hormonal going on as a starting point.

Fingers crossed its something easily found and rectified.

Thanks again

Wispymisty