What are your pain levels due to RLS? I ask after another sleepless night and no idea of what's going on.

[Foz_83]

Morning all.

Nice early post to start the day off after another night of only 1 and a half hours of sleep and having to get up at 6:50am with the baby to feed her etc. It's going to be a long long day.

Anyway, I've just been reading through a few of the posts on here and wondered if you could help?

Alt of you mention pain levels with your RLS? Could you perhaps expand on that? I ask because my RLS is annoying, it keeps me awake and I can't sleep, however it's not painful at all, not even remotely. It just simply means my leg won't stay still and I have to keep moving it, thus keeping me awake. No pain though. I'm on no meds either, though seriously starting to consider it now.

I went to bed last night, should of been tired but wasn't. RLS kicked in as per, but even at 3:30am I still didn't feel tired. Is this a RLS thing also? I mean, surely you can still feel tired but RLS just screws you over? Regardless, I'm just thinking of going in the garage, getting a chainsaw and chopping my leg off above the knee! Just so I can have a good sleep!

[march1044]

It sounds like you just have classic RLS. Some people do experience pain with it, but many don't. I only experience RLS pain when I'm really overtired. Then my legs get a bit achy, along with the squirmy feeling. It also sounds like you should check out medication with your doctor, as it is seriously impacting your ability to function. Good luck!

[Madlegs1]

You raise a very interesting point - ie - pain and RLS .

Officially , pain is not part of the diagnosis -but , as you say , for very many people , pain is very much an integral part of the experience.

However - there is the issue of people thinking they have restless legs when in fact they don't. There are many neuropathic conditions that may beconfusing.

The Side effects of rls are definitely painful- my smashed knuckles bear witness to that.😢 and you will probably have some minor distress from chainsaw wound 😈. (By the way- chop them off below the knee- easier to fit prosthetic 😉)

It is also incredibly dangerous as lack of sleep is a major contribution to accidents. Plus the real danger of suicide.

So let no one tell you it's not painful.

So where does that leave you?

Are you breastfeeding- if so , that leaves you limited options - check out with La Leche League. They have a medical panel for that situation.

If bottle feeding - then you can access all meds possible. Check out rlsuk or rlshelp.org for a world of hard info on what to take and what to avoid.

All the very best - you are in a good position not having taken anything- although you may have unwittingly taken a trigger medication such as antihistamine - which may be all you need to do (stop taking it)

BTW did you always have rls or did it arise during pregnancy?

Good luck - keep in touch.

[Hidden]

They do accept now that some people do experience pain with their RLS. I get pain with mine, its a deep ache in my calf, , behind the knee also, and all different areas of which ever leg is having the RLS, right down to my ankle.

I agree with all the other parts that Madlegs has said in their comment to you.

[Hidden]

+1 on madlegs1 and I would have very similar pain to Elisse.

The pain is bad when the RLS is more active and when its going on for several hours without drugs it is sheer agony, if I could've gnawed my own legs off at that stage I would have. The next day when things have subsided the pain is like I ran a marathon the day before, (I am sure I would easily have paced/jiggled 26 miles worth some days).

It hasn't always been painful though that has become more evident as the condition has got worse and with other health complications. It used to be just the annoying crawling sensation - can't believe it but I long for those days.

You must be exhausted being a new mum, (congrats on that), and having RLS. Don't forget the mental toll that this all takes and talk with people about it. Take any and all help you can get. Relative drops in and says they would love to take him/her for a walk have them both out the door and be in bed before they can draw breath. Or don't wait til they offer ask, (if you can).

Hope you get relief soon,

[Hidden in reply to Hidden]

raffs, mine used to be the creepy crawling feelings too, but now seems to have progressed to the pain.

[Joolsg]

Absolutely the same for me. I have no pain, just the unbearable, uncontrollable urge and need to move both legs ( and now arms, trunk due to ropinirole augmentation) all night. I sometimes relieve the awful feeling by stabbing my legs to cause intense pain as this distracts me for a short while. I do feel exhausted though and try to fall asleep but the legs jerk me awake instantly. I have also thought of sawing my legs off but what if "phantom leg" syndrome meant we still had RLS but couldn't move to relieve the sensation?? I am going through ropinirole withdrawal now so symptoms are 1000% worse. This website has literally saved my life by advising me how to deal with the hell of stopping ropinirole by using Tramadol. I f you consider meds read this website fully first to see what others say about their meds and what works and what doesn't.