Does RLS always cause jerking?

Or do some people have it with just restlessness and the need to move around a lot?

[Hidden]

i dont get the jerkin, but a strong urge to move, and awfull pain

[Hidden]

Hi Tallula. Can you describe this awful pain to me I wonder? Thanks.

[Hidden in reply to Hidden]

well, its like electric shocks going through my legs, and lower back, it starts with a weird kind of fizzing feeling, thats the warning i get, then i know im in for it grrr, and my muscles get very sore, when it stops, im very sore and aching all over because ive been on my feet for hours

[gypsy49]

jerking as in spasm .... i get wonder if thats what your refuring to

[Hidden in reply to gypsy49]

Yes exactly thanks. It is what I always thought RLS was to be honest. I don't have this so if that's what the criteria is or what everyone with RLS experiences then I should tick this condition off my list of suspects for myself. That is why I'm asking. I'm in a lot of burning pain in my feet and legs tonight. I think this is the return of my RA but as I'm moving them all the time to keep them from locking and trying to shift the pain from them I'm up and down a lot too - hence my question how does this pain feel ie burning, stinging, cramp-like, throbbing, aching etc. If this is RA pain then its new to me but that's very possible too. TildaT

[Hidden in reply to Hidden]

I get strange pulling pains in my feet when i get an attack of rls

[Hidden]

My pain feels like the muscle is going to burst, explode. And I do have jerkings in my legs, not the arms.

[Hidden]

Thanks Swedish. Sounds horrid but then so is mine. Its okay once I'm moving about but by evening and night time it comes back and wakes me up as if my hands and feet might explode with this corrosive stinging and burning deep inside. I have to move about to try and cool it down and it keeps me awake for most of the night but there's nothing to see, no swelling or visible hot red joints as with RA. I see the GP tomorrow. Have had this for 6 or 7 weeks now and feel I'm going crazy. Everything hurts now - it is getting much more intense and painful. The search goes on and the sleep gets less every night. Its very insidious! TildaT

[Rubylane25]

PLMS or periodic limb movement disorder is an offshoot you might say of RLS. I have both the restlessness and the jerking. If you google PLMS you will find i nformation on it but it is definitely connected with RLS

[Hidden in reply to Rubylane25]

Thanks Rubylane. I know that mine is severe Peripheral Neuropathy but I don't know what is causing it? Almost every condition and disease seems to have the potential to cause this PN - especially diabetes. But I was tested for diabetes a month ago and was within normal range for blood glucose.

I think its either giving me the extreme restlessness at night or the night restlessness is part of me and this is the latest symptom that I'm getting. I think the affect on my state of mind is probably what I have in common with all of you rather than the actual symptoms.

I will look up what you describe but must say there's nothing very periodic about this for me -its all night every night and only eases when I move about or get up and walk - then comes back like a horrible deep nettle rash when I lie down again. TildaT

[Rubylane25 in reply to Hidden]

So sorry to hear how bad things are for you. For so long RLS has not been taken serious especially here in Canada. Lets hope more research is done soon that will help us all!

[Hidden in reply to Rubylane25]

None of these diseases or conditions seem to be taken seriously enough though Ruby - from RA to Crohns to Lupus to Sjogrens to RLS, Pernicous Anaemia, thyroid disease to MS - all seem to be disregarded and misunderstood compared to cancer, diabetes and heart disease? I don't know why - I think they are just as terrible in the short and long term but only people who suffer them can understand how awful and life changing they all can be.

[Hidden in reply to Hidden]

I was diagnosted with Peripheral Neuropathy before they found out that it is RLS/WED.

And when I first got Mb Crohn in the early 1970:s they said that I had to eat moore proper food and take care of myself!

But today I met knowledge and compassion and I'm so satisfied with the morphine that helps me living a normal (nearly) life.

[Rubylane25 in reply to Hidden]

How true, I am on fentanyl doe the reflex sympathetic dystrophy that I have and believe me when I am not on it I live in agonizing pain, when I am on it my life is almost pain free. It is a blessing in disquise.

MD and MS are taken very very seriously here but things like fibre milga, chronic sleeping disorder and other syndromes like RLS make one feel like the world sees you as a hypochondriac. It is very discouraging.

All we can do is fight for change. My friend fought for compensation for carpel tunnel syndrome all the way to the supreme court and won and now it is covered for all canadians!

[Hidden in reply to Rubylane25]

This is one of te reasons for changing the name from RLS to Willis-Ekboms disease, it will give a moore serious "air" around the problems we have.

[Hidden in reply to Hidden]

Yes that can work I agree. It is the same with RA and people assuming its just a bit of arthritis. And I did think RLS sounded quite silly and not that serious when someone first suggested it to me. But they explained it and I then realised how serious it can be.

I don't think mine is RLS now I've read more of your comments here. I think that the methotrexate, which is a chemo drug and first line drug for many automimmune diseases, has probably damaged my peripheral nervous system - which hopefully will wear off in time. The symptoms are distressing but at least I have learned a lot about other conditions such as RLS and Pernicous Anaemia and Sjogrens now and feel that I can help raise awareness more myself too. Hopefully this works both ways and people here will learn more about other diseases such as RA and Sjogrens which are often met by ignorance too. Tilda x

[Rubylane25 in reply to Hidden]

I have heard that they are changing or already have chanfed the name. That is good news. As a matter of fact the pills I take for RLS are not covered under our pharmacare program but if I were taking the same prescription for parkinson disease they would cover it. Talk about discrimmination and making one feel that what they suffer from is not considered "real" so to speak!

[Hidden in reply to Rubylane25]

Again this is the same situation for the cytotoxic drug I've recently had to stop taking. If you google it this is listed as a chemo drug with peripheral neuropathy a potentially common side effect. And yet my rheumatologist is very reluctant to concede it could cause this problem at a lower dose. But we are on this drug for life whereas cancer patients only take it short term albeit at much higher doses.

The thing I have learned in my search for answers, is that there are so many conditions of similar seriousness to RLS but the general public only really fear cancer or heart disease or Parkinsons or MS - until one of these other conditions actually impacts directly on them. Name changes may help but publicity and proactively raising awareness for your condition is actually more useful. Tx

[Conchita]

Ihad a thorough examination by a Neurologist and he could find nothing wrong. His conclusion was that the jerking was due to restless legs. I have it quite severely and I feel it sometimes hits my chin when I am sitting(slight exaggeration) but horrible. You have my sympathy so hope yours gets better. Good luck

[Hidden in reply to Conchita]

Nothing wrong - but you have RLS! Isn't RLS very much wrong?? Sorry, but sometimes I think the doctors are talking a little bit strange.

[Conchita in reply to Hidden]

Sorry Swedish I meant to say he couldn't find anything wrong with the nerves but he did conclude that I had severe restless legs

[Hidden]

Anyone who has jerking, have a look at my post on Myoclonic Jerks, and see if this might refer to you...

[Hidden in reply to Hidden]

I have just been to see GP and he thinks he's going to start me on one of the dopamine drugs for RLS - beginning with P he thinks. He doesn't seem to think the RA drug has caused my current neuropathy anymore and he feels RLS is the most likely cause of my polyneuropathy - especially as it worsens at night and I've recently become aware of twitching feet when I wake sometimes.

I'm so tired and low with all this that I am not making much sense - sorry. I didn't even push him to refer me to a neuro because he felt that the test would be if the dopamine drug helped or not and seeing a neurologist probably wouldn't make things any clearer. He took bloods to check my ferratin levels and ESR again but my RA markers now indicate that the RA may be inactive at present. I should be cheery about this but just feel more scared. It took 2 years to accept I have RA and now something completely different seems to be happening that can't even be confirmed so could be all in my head?

[cumoneileen]

Yes RLS is just that. Legs jump and there is way to control them, Walking helps but when relaxing or trying to sleep only medication works.