RLS Independent of the time of day

[Jademarie1]

Hey all. This is more of a general question, but does anyone know why someone would have RLS regardless of the time? I seem to have it whenever I sit down. (I am not on any DAs. I only took them for a month or 2 a year ago before things went downhill with them). There are no perceivable triggers either, it’s just my normal state most of the time. My nerves also feel more itchy if I don’t have something soft like leggings or pajama pants on too. I mentioned that I was going to trial lyrica, which is still my plan. But I am more keen on getting to the bottom of this as most people on the forum seem to struggle with night time symptoms solely. I’m also 21 and have only had RLS for a year so it’s very very strange. I know there’s no solid answer but just open to theories or personal experiences

[Madlegs1]

Very frustrating situation for you!

I can only think that a change in your life at that time may be contributing?

Perhaps a change in your environment at that time?

A trigger can be anything at all, not just diet! I'm thinking such things as laundry powder, cosmetics, deodorants etc.

Might be worth looking back to that time !

All the very best.

[bergfex in reply to Madlegs1]

Yes, very frustrating. Hopefully you haven't had them since early childhood as I have (60 years old now). However, since I've started on gabapentin 300mg nocte (together with lamotrigine), my legs have been quiet! Talk to your GP about it, maybe gabapentin works for you as well at the right dosing. Good luck to you!

[Jumpey]

I'm sorry to hear you are suffering. Are you taking any medications for any other condition that could be triggering it?x

[Jademarie1 in reply to Jumpey]

I take klonopin or tizanidine depending on the night. Gabapentin didn’t cut it for me

[JLP76]

I used to only get symptoms at night but it gradually got earlier and earlier and now I sometimes get them in the daytime, especially evenings. I hate it so much.

[Jumpey]

Also wondering if your iron levels have dropped. May be worth getting your ferritin level checked. X

[Hidden]

Hi again.

Some people do get RLS at any time, but it's usually worst at night. The skin sensitivity is a little unusual. It's hard to say as there is a diversity of symptoms people with RLS suffer andtheir descriptions (of the same thing) can be different.

It is possibly significant that you previously took a DA but "things went downhill with them", what exactly, happened?

It's worth double checking then, is this really RLS. Lyrica would be the first medical treatment to try if it is, but if it's something else then it may not help.

I can appreciate that you want to get the bottom of this, so the first thing to do is check your symptoms against the RLS diagnostic criteria. If there's any one of the criteria that doesn't fit, then you probably do not have RLS. Note particularly the fifth criteria.

here's a link

irlssg.org/diagnostic-criteria

If you do definitely have RLS then the bottom line is that it's probably "primary" RLS, i.e. genetic and, sorry to say, life long and incurable. It's therefore a matter of finding as much as you possibly can about the conditon and possible medical treatments.

You'll also need to consider strategies for dealing with some of the consequences of RLS, e.g. sleep deprivation anxiety and depression.

You cannot rely on doctors or medical treatment alone.

I believe you may already have some information on iron therapy.

Then there are both "triggers" and "aggravating" factors. The difference is that triggers thend to make RLS worse failry quickly and once avoided, RLS improves failry quickly.

However, some aggravating factors are longer term. Their effect may build up over months or years and reversing their effect may take the same time. They're not so easy to detect.

The main factors, if you're not taking any medication, is diet and lifestyle factors.

It is possible your symptoms are due to something else which is treatable

[Jademarie1 in reply to Hidden]

I’m not quite sure what else would cause these symptoms. No one in my family has RLS except for myself: I’ve had it around a year. I took ropinerole for 2 months and started having some involuntary movements. I stopped it for 2 weeks then when I went back on it, it didn’t help with my symptoms anymore. I took mirapex for a few weeks but it just made my symptoms worse too so I thought it best not to go down that road again. I also have some muscle twitches or little spasms with my symptoms if that makes it clearer.

[Hidden in reply to Jademarie1]

I suspect you don't have RLS.

Ropinirole and/or pramipexole would have been effective for you if it were RLS and not actually make symptoms in such a short time.

You say you have some muscle twitches or little spasms. If these are actually visible then they're called fasciculations, not RLS at all.

[Jademarie1 in reply to Hidden]

I can’t sit still without the horrible discomfort though. The ropinerole did work very well for just under 2 months. I wonder if it’s more than one solitary condition at work

[Hidden in reply to Jademarie1]

I'mreally not convinced you have RLS, I believe it is possible you have some other condition. It is possible you have mild RLS as well as some other condition. You need to consult a doctor.

[MumofSam]

When I was a child and teen I suffered from RLS at all times of the day or night. As a young teen even running for a bus could trigger an attack. All very much stress related for me. Thankfully as I got older it settled down to evenings and nights mostly, but I can still sometimes get it at other times. I’m now 59.

I know what you mean about clothing being a trigger too. I can no longer wear pyjama bottoms, and certain materials, especially if they’re itchy, can trigger it off too, as well as tight clothing.

I’m on a low dose of Pregabalin (Lyrica) and it helps but doesn’t stop it. I’d recommend only taking medication as a last resort if you can possibly manage without it.

[Jademarie1 in reply to MumofSam]

Given my age, i don’t think any practitioner would be okay prescribing an opioid and it’s not something I want to build a tolerance up with so early. I’ve mentioned lyrica a few times but I was trying everything else I possibly could before actually going through with it since I know it has some undesirable side effects

[TheDoDahMan]

Since you're asking for personal experience, let me say that in my case, it seems that RLS doesn't necessarily affect me at night time, but rather mainly when I'm horizontal, i.e. laying down. As an inveterate night owl, I often don't start to sleep until 6 in the morning, but upon laying down, I'll sleep for less than an hour before I'm awakened by the leg jiggles. The fact that it's by then daytime, doesn't help.

Of course, now that I've been prescribed low-dose (2 x 5mg) methadone, I no longer am troubled by RLS symptoms.

[Munroist]

Your symptoms feel like they could be nerve related. Have you had any back issues or other things which might affect your nerves? Some people find it flares up after operations.

[Jademarie1 in reply to Munroist]

No I haven’t had anything like that. I am awaiting results of a small fiber neuropathy test. Large fiber came back within normal limits but this should narrow it down hopefully

[Legs1970]

I have suffered with RLS for nearly 30 years. I get around the clock every single day and I'm at my wits end with it. I've bloody had enough. It's doing my head in and it's done my quality of life in. Ive tried anything and everything and nothing is working....I AM OVER IT!!