I need some advise/ help


When I was 9, I was a very nervous kid. Over thinking, freaking out and literally would worry a lot. Then it happened. My family named it "twitches" were if I was holding a drink and wasn't holding it properly or eating something and someone was watching me. My arm would have like a spazam and would look like I am punching or flicking something. I am now 18 years old and it's the same but worse. Even if I am not nervous I have twitches for no reason, it now happens to my neck, arms and foot. Most the time it hurts my shoulders, I try and control them when I get nervous or stressed but sometimes it just happens. It's embarrassing I can have 15 twitches a day.... Can someone help me get rid of them or not have them so much? Or tell me what it is? Please I want to know

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  • Oh you poor thing. I really don't know what it it but it does sound progressive. You should really visit your doctor and get some help. Please see the dr and let him / her help you . Don't rely on laymans advice. Good luck.

  • I might actually go doctors x thank you xx

  • Are you sure the twitches aren't due to lupus? Since having lupus myself I acquired a twitch only I call it tics. Mine happens more if I'm relaxing or trying to relax and my partner rubs my shoulders or strokes me.

    Actually they are a lot better now than they used to be. I have no idea what causes them. I mentioned them to my doctor and he just nodded and wrote it down. I'm guessing it's to do with the nervous system.

    Maybe you should have a word with your doctor about them. He might be more helpful than mine.

    Maybe also it will get better wth time like mine has. I have also become more relaxed in myself over the years so that might be why they have improved. Maybe relaxation techniques or meditation will help.

    Anxiety is an awful thing and I feel for you.

    Donna Eden on YouTube does some energy medicine exercises that supposedly cured her from MS. They help with energy flow and when I do them I feel better for it. I was introduced to her by a friend. That might be worth a try.

    Best of luck. I hope you get some help and relieve xx

  • Thank you so much, you have helped me a lot. I will have a look on YouTube tonight! Xxxx

  • I have twitches too, they're generally in my hands, arms and legs. My Rheumy said they're Lupus symptoms.

  • Me too....'myclonic jerks' is what my lupus clinic calls them. They happen mainly in my limbs, sometimes separately, sometimes my whole side inc arm & leg. Often get these when I'm lying down. I also get tremors in my hands & legs/feet & voice when my chronic neuro cerebral symptoms are flaring. My impression is that my daily SLE meds do mainly help damp these jerks down: hydroxy + myco + pred + amitrip

  • Not so long back I was cutting a slice of bread and my hand jerked I thought I'd cut my left index finger off!

  • πŸ˜ŸπŸ˜œπŸ™ƒ

  • Hi, i get twitches when im lying down. It feels like the twitch you get when your eye starts twitching. Its mainly on my left side all down the body. So is this normal? Is it anything to worry about?.

  • Could be myclonic jerks. My understanding is there is no point worrying...many people get theses m.j.s without there being a sinister underlying cause. Just mention your twitches to your dr next time you're in clinic

  • Brilliant will do thanks xx

  • Hi again: hope you've read purpletop's reply, below. Here is a link to the myclonic jerks section of the website she recommends:


  • Ohhh so did you go to a normal doctors? Xxx

  • A lot of people have said about lupus? What is it? If you don't mind me asking Xxxx

  • You will get a better idea of

    what Lupus is by going to the Lupus UK site.

  • One of my son's has had these since seven years old.He has not been dx with lupus. He has a tic disorder similar to Tourette which includes the nervous ,unsure,hyper symptoms..This is a stand alone condition not related to lupus. It might be worth asking GP for advice on this as he takes daily meds now which have helped a great deal.It maybe lupus related as others have suggested or not and I think it would be better to get a medical professional to assess as I have seen my son suffer until diagnosis and tablets.Perhaps you could look up ,Google, tic disorders, and see if any info relates to you and your feelings and then request Gp to refer you for assessment.

  • Yeah that's sounds like a good idea, my parents don't really want me to go doctors. So I don't have to take tablets ever day x but I am getting tired of having twitches xxx

  • May God heal you.you are to young to worry a lot .

  • Yeah I know right! It's crazy I am just very nervous kinda person xx

  • What you describe appears to be myoclonic twitches (without a full workup, history and testing, I can't give you a concrete answer). Depending on the action of the muscle, they are termed positive or negative twitches. Sometimes they are idiopathic ( meaning we don't know what causes them) and nothing to worry about. However, sometimes they are indicative of a neurological disorder. Myoclonic jerks (spasms) may occur alone or in sequence, in a pattern or without a pattern. Often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, Gaucher's Disease, subacute sclerosing panencephalitis, Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, and some forms of epilepsy.

    You should see a neurologist and he/she will order blood tests and do a complete neurological exam on you.......probably order an MRI. I would suggests you go sooner than later just in case it is a progressive disease that could be treated now. I have given you a number of causes for your twitching of which none may apply to you so don't worry or get anxious. You need to get a concrete diagnosis. Often, it is nothing to worry about.

    If I can be of any help to you, please don't hesitate to contact me.

    Dr. S (in the USA)

    P.S. I am a retired Neuro-Ophthalmologist and I also have Lupus.

    P.S.S. I don't think you have Lupus from your symptoms, but your Dr. will order an ANA and DS-DNA blood test to rule it out.

  • Hi thank you, you have helped a lot. Sounds like a stupid question but do I go to a normal doctor? Or should I go somewhere else? Xx

  • I don't know what you mean by a "normal" Dr., but I assume you mean a 'Family Dr. or an Internist' [general practitioner]. I think you should see 2 different specialist to start......a Neurologist (he/she will check for diseases of the nervous system) and a Rheumatologist for auto-immune disorders, arthritis and diseases of the joints, muscles and bones. I am not sure how your health care system works if you are in the UK.....you may need to see a General Practitioner 1st and then get a referral to a Specialist. In the US, most health plans don't require you to see a General Practitioner 1st, you can make an appt. with any Dr. you choose without a referral. When I use the term General Practioner, I mean a Family Dr. or Internist. In the USA, I am considered an Internist with a sub-specialty in Neuro-Ophthalmology.

    Hope i have helped you.

    Dr. S.

  • From what you're describing you need to see a neurologist specialised in movement disorders - it sounds like dystonia tremor. Go to dystonia.org.uk and under About Dystonia you'll find some information about dystonia tremor.

    I'M NOT A DOCTOR, so don't rely on what I'm suggesting here, I could be completely wrong. I would suggest that you see a specialised neurologist, not a general neurologist, otherwise you won't get the correct diagnosis.

    Ask your GP to refer you to a neurologist specialised in movement disorders. If you live close to London, ask to be referred to the Movement Disorder Team at the National Hospital for Neurology and Neurophysiology - it's a UCLH hospital in Queen Square, London.

    Don't despair - if it is dystonia, there are some ways of controlling the tremors.

    Good luck and I'm sorry you're going through this.

  • Hi! Thank you so much! I live in Bracknell, so I may have to see about getting referd from my doctor but I will have a look at the website about dystonia tremor xxx

  • Your GP can send you directly to the Movement Disorders team at the UCLH hospital I mentioned through Choose and Book, I was sent the same way. It may take up to 6 months before you see someone but you get to see a proper specialist, not someone who has 'an interest' in movement disorders.

    All the best and let us know how you got on.

  • Grrrreat link PT! 🌟🌟🌟 Many thanks πŸ‘πŸ‘πŸ‘πŸ‘: this org gives the best info I've read to help me understand my lifetime of chronic jerks/twitches/spasms (above I say my medics have told me mine are myclonic jerks....this FAB website gives them a more specific formal name: myoclonus).

    In case anyone reading this thread is interested, here is a link direct to info on myclonic jerks:



  • You know what they say, it isn't what you know but who you know. That's why this forum is so useful - someone, somewhere has researched or experienced the particular symptom and can point in the right direction.

  • Well put πŸ‘πŸ‘πŸ˜‰πŸ˜˜

  • Sorry to hear. Could be Tourette syndrome.

  • Hi Emzii101,

    I just want to make you aware that you have asked this question in a community forum for people with lupus which is why this condition has been mentioned to you in the comments.

    If this is your only symptom, then it is unlikely that the cause is lupus (which generally presents with an array of symptoms including joint pain, fatigue, hair loss, rashes and many more).

    Nobody in this community will be able to provide you with a diagnosis, but a few possible causes of this symptom have been outlined below. In order to get a diagnosis and potentially some help with alleviating this, you will need to see your doctor.

  • Hi Emzil, I see you have a lot of replies to put your mind at rest. Just wanted to say I get them too. Sometimes so bad I have kicked the bar on my bed & damaged my toenail lol was in pain for days. I tend to get them in my legs & stomache (of all places) feels most peculiar.

    I have Fibro & nerve damage, any type of neurological disorder would give you these tics.

    As you probably know, there are many neurological disorders so it could be lots of thing. You need to go doc's and get it checked because it can be treated if serious.

    My grandson has tics & he suffers with Torettes.

    So yeah could be absolutely anything..let us know what doc has to say & don't worry to much about it.

    ☺Jan x

  • Thank you, you was very helpful :) xx

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