The Jerks! Does anybody else get this?

I have started a new thing, my arms or legs, or even just my hands and fingers have stated to jerk together, by that I mean, I can be lying in bed or sitting down, and suddenly both arms will jump up very quickly in the air!

My legs do the same, both sides simultaneously, I am also getting stinging in my hands and feet especially, very like getting stung with nettles.

I take premipexole 0.088 1 morning i lunchtime and 3 evening.

The double sided jerks can happen any time, but particularly in the early hours until morning, I had my symptoms controlled very well until the last couple of months, after being on the medication since last April after sudden onset of severe symptoms.

Thanks, Cazx

16 Replies

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  • I have that going on all darn night... most nights.

    If you are on an anti-depressant, it's important to tell your doctor.

    I was told that if it is related then it can become permanent.

    I had this going on long before I started Premipexole.

  • I am not on antidepressants, although I may need to, and I also had this before the medication, last night was terrible!

    Thanks for replying,

    Cazx

  • My Mum has the jerking with her restless leg syndrome, although doesn't get this in her arms, only her legs which is bad enough! She takes the same dose of pramipexole as you do but isn'r convinced it makes any difference! When her legs are really bad she can take up to 8 tablets a day with no effect - do you find the same? Having to watch her go through this, as her legs jerk even when standing now, is horrendous, can't imagine what it must be like to actually have it!!

    In relation to the above post, Mum does take an antidepressant, whiuch her GP knows about - do you think this is affecting her 'leg' medication then?

    Hope you do manage to get some relief Caz x

  • I have never upped the dose, as my GP told me it is very high already, and until recently it was working really well!

    I think it does depend on which anti d you are on, I gather there are some which are ok, if you look at my other questions, I have one that answers that, but can't remember off hand!

    Cazx

  • I have been on Pramipexole as well for the lat 5 years and get jerking in my arms shouders and my head and annoyinly my head jerks just when i am about to fall asleep.

    It is a sideffect from taking Pramipexole.

    Pramipexole stops my RLS so i am willing to put up with it

    If Pramipexole isnt working for you perhaps its time for a change of medication, just a suggestion

    bambisoloved

  • Thanks, I did not know it was a side effect!

    I am concerned because of the short time I have been taking it, only about 9 months!

    Cazx

  • I get terrible jerks and flinches plus the pins and needles and dead areas all in my arms and legs. Last year I was involved in a car accident and put on Diazepam to help with my whiplash. It has also helped with my jerks, flinches and, to some degree, my pins and needles.

  • I have the jerks so bad my partner thought I was fitting. At their worst they came every 15 seconds throughout the night and could be quite violent. Sleep or rest was totally impossible. The only relief was to get up and walk around. They would conttinue through the day at times, this could be very embarrasing if I was sat on a bus next to someone. I have been diagnosed with RLS and PLMD. I have read that PLMD happens when your asleep but I was most definitely wide awake. It is scary to have your limbs jumping around without your consent. I had it everywhere, arms, legs, shoulders and hips. I am now on 4mg of Ropinorole modified release, I still get the odd jerk when falling asleep but generally both conditions are quite well controlled. I sympathise with you it's a strange condition to have but keep seeing your doc or ask to be referred to a neurologist, which I was until you get sorted. Good Luck.

    Lea

  • Hi Lea,

    I saw a neurologist for severe headaches and visual problems not long after the RLS symptoms started, and he had no interest in the RLS!

    Perhaps I should try another one,

    I had no Idea that I may have PLMD, until recently when my husband told me about it! Apparently I have been like this more or less since my accident.

    I was actually woken up with my legs (both of them) shooting up in the air and falling back down, which was quite painful for my back, you are right it is scary!

    I will look into the Ropinerol. thank you! I also have arranged an appointment with my GP.

    Best wishes Cazx

  • Hi,

    I also have had a couple of accidents, one of which was a whiplash involving cars, and also a serious fall, which has left me disabled with inflamed facet joints, degenerative Disc, split and prolapsed discs, resulting in sciatica, and PTSD, the latter I had treated very successfully, (at least in comparison to how I was before)

    Last year I developed severe RLS, it literally came on one evening without warning, for the first time! Pretty much my whole body was involved within 4 days from onset.

    Since then I have developed possible Sjogrens syndrome, RA, and some other problems.

    I do take Diazepam for muscular spasms, also Tramadol for pain, and also RLS

    Unfortunately even with these medications things are going down hill very fast.

    I dread finding out that I have augmentation already, as it seems most people can have relief for longer with Pramipexole!

    I wish you the best of luck and hope that your medication continues to help you.

    I recently saw a Rheumatologist, who believes most of these problems are down to the last accident I had, the fall. and are related to the spine.

    Cazx

  • PS. I was given Pramipexole for my RLS but the I had the jerks before I started it. When I look back I used to have moderately bad RLS ie I just used topical medication. I used a gel. I used to lie in bed reading and one of my arms would suddenly go its own way. I was scared at the time I was developing some awful neurological disease. The RLS slowly became worse and worse and as it did so did the jerking, the two seemed to go hand in hand. I have been on antidepressants a long time. I really don't know if they caused it, but I can't stop them. Not sleeping for days and thrashing around the bed all night is hardly conducive to good mental health mind.

  • Hi Portia,

    I do sympathise, I have found the website that has a list of medications that seem not to affect RLS it is rlshelp.org Sorry i do not know how to do tags, I hope this will help you!

    Best wishes Caz

  • do your arms just jerk or do have that "URGE to move them?" if they are doing this all by themselves without that gnawing feeling, then you have something else going on as well as RLS. We cannot always blame everything on RLS. We can have more than one thing going on at the same time. Andminvoluntary movements while awake are most likely "myoclonic jerks" that just happen, and does not feel like RLS at all. YOu have to have the absolute "URGE" to move those arms, or you cannot call it RLS. PLMD is involuntary movemnets, but when you are asleep (99% of the time) That theory has come into question as to whether PLMD always happens when you are asleep, but normally it is, and that is involuntary movements. any number of rLS web sites can address this.

  • Hi Night dancer,

    Yes my arms, body and legs move on their own and have done since the RLS started, I get it mainly after a particularly bad bout of RLS, where I have to move to get relief.

    I think I also suffer from PLMD, as my husband recently told me I am getting worse at kicking out at night, He says it is as if I am in constant motion with my legs going mad and my arms also getting involved.

    I had not connected this, as he has never really said too much about it, but this and the involuntary movements and the increase in RLS have all started to worsen recently, along with a worsening of my back symptoms.

    I do definitely have an urgent urge to move my legs and sometimes my arms too, to get relief.

    I don't quite understand about the web sites, do you mean they can address the theory, or the involuntary movements, I am a bit foggy today, just to improve things, LOL!

    My GP thinks I may have Fibromyalgia, maybe this has something to do with it?

    Thank you very much for you answer, and I hope you are as well as c an be.

    Cazx

  • Maybe we should also be looking at Saint Vitus Dance, also known as Sydenham Chorea -

    rightdiagnosis.com/s/sydenh...

    Restless legs is mentioned. People used to say to me as a child 'You've got Saint Vitus Dance'. I did not know what they were taking about as I never danced. Again as I said in another answer it is only when you get older and look back at the bigger picture that events and things said in the good old days start to make sense.

  • Hi Barried,

    I will check this out, Funnily enough I used to get the same thing said to me! I could never sit still, and my mother tells me even asleep my foot would move continuously on its own! News to me, she only mentioned it since all this stated!

    I have always felt better moving, and feel weird keeping totally still.

    Best wishes to you,

    Cazx

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