Systemic Muscle Twitching- Another Serious Account

Posted , 3 users are following.

So, I'm one in the community who experiences what I call " systemic muscle twitching". I can say that at a young age of 12, My first experience with it begin as an upper eye lid twitch. Years down the line ( i'm 29) I've consecutively experienced rampant body twitching in every possible muscle group capable of twitching. From an eyelid to a back muscle, with occasional 1-3 day off time when my muscles seem to be in a " solid state", then it resumes. Week after week.  Day in and out,usually.

My diet is fairly good, As I eat from organic sources as much as possible, but even when caught in the conventional maze of aisles, I only stick to the produce and meats sections. 60/40 veges fruit/ meat.  I also drink a green "smoothie" containing an assortment of fruits and veges as to rest assured that I've gotten a good deal of nutrients.  On the diet end and nutrition end, i'd say i'm fine but perhaps i'm lacking Magnesium and potassium? Na, I supplement them and get'em from whole food sources so that isn't the cause of my twitching,

My sleep habits have 'been off. I used to sleep late at times (1:00 am) wake up, and go to work at 7 am. In deciding if this was part the cause I've altered my sleep habits to hit the sack by 11:30 pm

I DO, live a relatively sedentary life, and smoke cannabis here and there to mitigate the sensations of the twitching, and my exercise since youth has drastically declined, so there may be a connection there. Some times I think maybe the twitching is indicative of my muscles 'wasting away' due to this but still, not sure if twitching would even result from that.

I hope to live a long life, a twitch free one at that.  This is an issue that has been going on for over a decade now, consecutively. Just about- non stop, light, medium, hard and powerful muscle jerks, twitches, spasms, in randomized, localized spots all over my body. my body.  If there's a muscle there, it's twitched and will twitch again. And if it hasn't twitched yet i'm sure its on the itinerary. An area on my back has been twitching for several days so far, same spot. VERY ANNOYING. next week will be a different spot..   I really don't want to live the rest of my life with this systemic issue.

I really wish there was more concrete research done on this. The many 'causes' of muscle twitching and the 'resolves' are nothing more than baseline generalizations. 

Those suffering, what have you done to mitigate your muscle fasiculations? 

due to the consistency and longetivity of twitches, I've been entertaining the thought that This could be due to a nuerological disorder.

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4 Replies

  • Posted

    Hi Donny,

    Everything you mention I get, muscle spasms, twitching, cramps, pins and needles, etc.... I was diagnosed with Generalized Dystonia, no cure just treatment to lower the pain and muscle spasms. I have 6 BoTox Injections every 10 weeks, 200mg of Tramadol for pain relief a day, and a load of other drugs, but they are for other ailments that are linked to most nerve disorders.

    I have had this for 30 years! Started when I injured my spine at 22 years old!

    Regards,

    Les.

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  • Posted

    hi Les63, Thanks for responding.   Its 'nice' to know someone is sharing symptoms with me. Sorry for your condition but its a great thing you've got the courage to live though them and tell your story.

    If I have a disorder, i'd really like to know. I'll be going to the doc soon hopefully, when I can save up money.

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    • Posted

      Hi Donny,

      To be honest when I was first diagnosed with Dystonia, it was by US Professor David Marsden in Neurology (sadly, he passed away a few years ago!). But, it took 2 years to find out what it was back then, because it was rare, I was only the 7th known case in the UK.

      It has become progressively worse over the years, and I have had cancer which I have just been signed off remission after 7yrs! I also had Intestinal ischemia and infarction (ischemia) or death of (infarction) part of the intestine. Two major operations for that and I nearly died twice, its basically like dying from the inside out - which I would not wish on anyone, it was painful and a full recovery took 10 months or more.

      Add all that to a complex neurological disorders and you have a person like me! A very complex case - even by Consultant standards, that takes 30+ tablets a day, some are counteracts for others, oral syringes (for Seizures) these can be Epileptic or Functional Seizures (28 variations).

      Pain-wise, that does vary, I have to sleep on an hospital bed provided by a charity (normally cost in excess of £1,000+). Every morning is different, because the pain is varied, from the lower spine to the neck, shoulder and top of the arm. My wife used to pull me up in to a sitting position, and that tore a muscle in her back - so having an electric bed helps in many ways, but not all the time. Sometimes I wake up in pain where I cannot move at all, this takes me a lot of time to get in the sitting position, to me get dressed which my wife also has to do, because of muscle spasms, sometimes a hour and a half or longer. If I am awaiting for a hospital appointment, my wife has to inform them that I am having a very bad day and will be late.

      How I would manage in the USA with the cost of doctors, consultants, scans, and prescribed drugs I would hate to think. I have a monthly list of 13 different medications, some being Class "A" drugs. Where most people go to pharmacies for 1 or 2 items on their prescription, my wife brings mine out in carrier bags!! lol

      Even though I put up with the aforementioned, I live life the best I can - it's a case of having to be, or I would be a serious depressive person. But I am down to earth, always leave people I meet that are new with an impression, where they always want to meet me again.

      I wish you well on finding the diagnosis, I would be interested myself.

      Regards,

      Les.

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  • Posted

    Hi.

    Your post illustrates the complexities of the brain/CNS.  During my life I've met with some of the best neurologists in the world and it and my DYT1 Dystonia confused them as much as it has confused me over many years.  

    As a child, I went through a number of major surgeries - described by one Neuro Surgeon as being "Barbaric".  When and if I get my Website up and running again I will put up the x-rays of my head showing that it looks like a metal scrap yard!

    Now many years on, I'm dependent on a wheelchair/powerchair to get me around. Without going into a long speech I believe that the aforementioned surgeries are in part at least to my current disability.  

    I'm on a variety of drugs now of these are relieving the spasms and cramps associated with Generalised Dystonia.  Of the dystonia sites I've visited on the WWW most if  not all only give a brief mention to DYT1 Dystonia.  I've been trying to figure out why this might be but I've not reached anything resembling my Dystonia.

    Now where do I go?  I've no ideas.  Any links or information would be much appreciated.

    Best wishes.

    Paddy

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