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Topic: Desperate for help

6 posts, 0 answered
  1. Sam2019
    Sam2019 avatar
    8 posts
    18 July 2020

    I have been living a life of hell for almost a year. It all started off after coming back from a trip. I was stressed before hand and stressed during and I came back almost to a break down. I've had the following

    1- Extreme fatigue since august last year to the point where I need to sleep all day

    2- I've ended up with a million different tests thinking I've contracted a virus. Nothing keeps showing up.

    3- I developed massive ectopic beats almost 1500 a day confirmed by holter which sent me into a new panic and more testing. Heart MRI's stress tests etc... all again normal and no explanation for the extra beats.

    4- I developed intolerance to standing up. MY heart just races when I stand and the ectopics go nuts.

    5- Recently I've started with twitching everywhere especially my legs. They will not stop from the knees down. Its been this way for month now.

    6- I then started to get internal vibrations whilst asleep in bed. I haven't had a proper night sleep in weeks. I just feel like my legs and body is trembling as soon as I start to doze off.

    7- Now I have tinnitus in ears almost daily and wont stop.

    8- I've been to 2 neurologist thinking and convinced I have ALS (motor neuron disease) from all the twitching.

    9- I've started to notice my left calf muscle where all the twitching is is smaller than my right and this sent me into a total spiral drive about the above ALS issue, I'm waiting to get further testing to prove what it is.

    10- I wake up every morning measuring the size of my calf for atrophy and I'm too scared to walk or run incase I feel weakness in one which will totally destroy me.

    My mind is just going in circles all day. From ecoptics, to twitching, to tinnitus then I go back to ectopics and the loop goes over and over. The fatigue is almost debilitating.

    doctors think t's all health anxiety and a breakdown caused by stress so they threw benzos at me. I took them for a few days by the symptoms did not go away. this sent me even more into a mental break down because I'm thinking in my head if thebenzos didn't help then there must be something seriously wrong ! I've seen a couple of phycologist who are all trying this CBT stuff but my brain just sees the physical symptoms and is basically telling itself you're too smart to be tricked by CBT.

    I'm lost at the moment !the only think I'm able to do is dull the fatigue and symptoms with alcohol for brief periods of time to get me through the day

    Any advice would be greatly appreciated.

  2. Sophie_M
    Sophie_M avatar
    3667 posts
    18 July 2020 in reply to Sam2019
    Hey Sam2019,

    We're so sorry to hear what you're going through at the moment. It sounds like it must be so frustrating and overwhelming to be dealing with all of this for such a long time, but please know that you don't have to go through this alone. This is a safe, non-judgemental space to talk about your thoughts and feelings, and our wonderful community is here to provide you with as much support, advice and conversation as you need.

    We'd also really recommend reaching out to our Support Service to talk through these feelings, and you can also discuss any concerns with medications or treatments that you may have. The Support Service is available 24/7 by phone on 1300 22 4636 or on Webchat 3pm-12am AEST on our website: www.beyondblue.org.au/getsupport One of the friendly counsellors can offer you support and advice, as well as referrals to help you through this.

    In addition to this, the counsellors at Lifeline (13 11 14)  and Suicide Call Back Service (1300 659 467) are always available during your most difficult moments.

    We hope that you keep checking in to let us know how you're going, whenever you feel up to it.

  3. therising
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    therising avatar
    1490 posts
    18 July 2020 in reply to Sam2019

    Hi Sam2019

    Sounds like your body is experiencing a lot of conflict. Extreme feeling of fatigue combined with hyperactivity in certain parts of the body would be incredibly frustrating, especially when no one can give you some solid answers in regard to what's going on.

    This might sound pretty out there but if you're getting no joy from the typical channels (modern day medicine) have you considered looking for some answers through traditional medicine? I know this probably sounds dismissive in the way of getting serious answers but I'm simply suggesting you question a field that's not giving you answers in favour of one that could, just for a little while anyway (even out of sheer curiosity).

    Myself, I was getting absolutely no answers in regard to why I was feel so incredibly fatigued for some time, about a year ago. The fatigue was so significant I was bordering on depression. Nothing was showing up in the typical blood tests. My GP was exploring various possibilities. One day, it just popped into my head, 'Focus on energy'. It was quite out of the blue. This led me to explore so many various aspects of energy. It was life changing in a lot of ways.

    So, while the medical world may label certain energy channels vascular system, nervous system, lymphatic system etc and attach a whole stack of complex understanding and descriptions to these systems or channels, traditional medicine works more so with understanding the basic messages these channels are sending. A practitioner would ask, for example, 'Why is there hyperactivity (excess energy) in the calf area?' or 'Why is there chaotic energy in the heart area?' Of course a reputable practitioner would take advantage of modern technology and get all relevant and important scans done to rule out serious issues.

    It would be interesting to explore finding a practitioner who incorporates both traditional and modern medicine. Such folk exist. They might be able to give you the joy you're looking for.

    Your body is communicating something. Finding someone who can speak its language is definitely a challenge.


    1 person found this helpful
  4. Sam2019
    Sam2019 avatar
    8 posts
    18 July 2020 in reply to therising
    thank you for the reply
    I honestly was thinking the same thing . something is going on with my nervous system and no one knows what it is . it's almost like a balance that it usually is in has been knocked out of balance ! no one has given me answers yet and weird things just keep popping up that my my mind race and make me even more fatigued . I'm starting I'm delving into the chronic fatigue / fibromyalgia territory and possibly all triggered by stress. my body just feels like it's hyperactive and is stuck there . I've made an appointment with a doctor who deals with integrative medicine which I'm hoping is more along the lines of what you are suggesting. I think they look at a problem more holistically I guess . I'm.even open to going through traditional medicine also . I just need to get this motor neuron disease out of my head ! my body has never felt like this and even though everyone around me says it's stress my head keeps going to other dark areas !
  5. dadsgripe
    blueVoices member
    • A member of beyondblue's blueVoices community
    dadsgripe avatar
    16 posts
    18 July 2020 in reply to Sam2019

    Hi Sam, I don’t really have much to add. I just wanted to say, I empathise with you and keep searching. You will find a treatment that will work. It will take time but you can do it.

    Kind regards.


  6. therising
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    therising avatar
    1490 posts
    19 July 2020 in reply to Sam2019

    Hi Sam

    Yes, this is pretty much the angle I was talking about. Mind and body are naturally connected in so many unique and quirky ways.

    Body language, of a specific type, is a fascinating topic. Example: Someone may say 'I've had this terrible headache for ages and this pain in my neck that won't let up. My shoulders ache something shocking too. I think I'll go and see a physio.' I could ask 'Do you feel like you have the weight of the world on your shoulders? Is there something or someone in your life who is a real pain in the neck and they're seriously doing your head in?' They could say 'Yeah. Wow, how did you know?' Truth is...they just told me, without realising. All 3 factors can be linked to one issue. Psychological tension creates physical tension in this case or, to put it differently, psychological dis-ease leads to physical disease. The body experiences emotion, in its own unique way. Looking at issues holistically can help tell an overall story. Looking at individual symptoms (messages our body's giving us) has a tendency to break everything up into separate issues. In this case, modern day medical practitioners can miss seeing the big picture.

    It will be fascinating to hear about your experience in the way forward. Hoping it's a great experience that brings you greater ease and self understanding.


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