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Thread: Fearing ALS

  1. #331
    Join Date
    Feb 2015
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    712

    Re: Fearing ALS

    Quote Originally Posted by NotDeadYet View Post
    Congratulations!! That's actually really exciting you are feeling post-workout burn/fatigue in literally every limb. That means your body is doing exactly what it is supposed to do!! I feel this every single morning after I run. It indicates to me that my muscles are working, growing and getting stronger. This is such exciting news that you should be jumping up and down that your body is working!

    And Seymor, you are 110% correct! You are losing muscle strength because you aren't doing anything.. Your body is doing exactly what it is supposed to do when you move after being sedentary. It shakes. It hurts. I have spent most of my HA causing my own symptoms because of poking, prodding, tensing, checking, testing, etc.

    Best Wishes.
    Yep, indeed. I was very active as a kid. Played all sorts of sports, karate classes, rode a bike or rollerblades everywhere. Worked factory jobs in early adulthood. Now I'm much more sendtary and don't exercise regularly (trying to change that), and I often find myself shaking / trembling, burning, etc, like you mention.

  2. #332
    Join Date
    Jun 2019
    Posts
    281

    Re: Fearing ALS

    I hear you all, really! It’s just that sensations are hard to put into words and I feel like those I have are beyond what I usually feel. They’re totally new sensations. That’s what’s scaring me...

    I don’t really feel the twitching when I move but at rest it can be like popcorn.

  3. #333
    Join Date
    Jun 2011
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    934

    Re: Fearing ALS

    Quote Originally Posted by Seymour View Post
    I hear you all, really! It’s just that sensations are hard to put into words and I feel like those I have are beyond what I usually feel. They’re totally new sensations. That’s what’s scaring me...

    I don’t really feel the twitching when I move but at rest it can be like popcorn.
    I have a large basal cell in the middle if my nose. The other day I got it into my head that it could get into the bones of my face. Now I have a more or less constant stream of sinus pain and aches I didnt have the other day. Even aggressive basal cell cannot grow anywhere near that fast.

    The point is, anxiety is powerfully suggestive. It knows no bounds. Until you accept that, this loop will just keep sucking you down the spiral.

  4. #334
    Join Date
    Feb 2015
    Posts
    712

    Re: Fearing ALS

    Quote Originally Posted by lofwyr View Post
    I have a large basal cell in the middle if my nose. The other day I got it into my head that it could get into the bones of my face. Now I have a more or less constant stream of sinus pain and aches I didnt have the other day. Even aggressive basal cell cannot grow anywhere near that fast.

    The point is, anxiety is powerfully suggestive. It knows no bounds. Until you accept that, this loop will just keep sucking you down the spiral.
    Well said, lofwyr, regarding the fact that anxiety is powerfully suggestive and knows no bounds. Been through that hell myself, so many times. Also, I know BCC isn't a major ordeal, but I certainly wish you well.

  5. #335
    Join Date
    Jun 2019
    Posts
    281

    Re: Fearing ALS

    Here’s a good song about mental health. The lyrics really describe what it’s like to be depressed and nobody understands you.

    https://youtu.be/n60shfb_u7o

    Well they said you were a bright child
    Never anything but joy behind your eyes
    No sign of all the dark clouds
    Spreading like volcanic dust over your blues skies
    Now they're looking for an answer
    Where the rot set in and set up the landslide

    But it only makes it worse now
    You're like a puzzle to be worked out


    And it's the voices in your head now
    Saying there's something wrong about the way I feel
    A broken link, a missing part, a punctured wheel


    And it's not what you're expected
    The way the world you built loves to cut you down
    The way your head gets twisted
    And you sit up all night trying to figure it out
    And they say you've made your bed now
    Don't you see you've brought it on yourself

    And they say that you should move on
    But you can't even get your shoes on


    And it's the voices in your head now
    Saying there's something wrong about the way I feel
    A broken link, a missing part, a punctured wheel
    It doesn't matter what you say now
    It's like some vision in the stars that seems so real
    The way I feel, the way I feel, the way I feel
    The way I feel, the way I feel, the way I feel


    And everyone else has got things sorted out
    You stand on the edge talking to yourself
    You're young, left behind and tangled up inside
    Last edited by Seymour; 18-09-19 at 07:38.

  6. #336
    Join Date
    Oct 2016
    Posts
    4,185

    Re: Fearing ALS

    We do understand you, we’ve all been through it and are going through it. Most of us still get up and go to work or get n with our lives because we have to, and because it often helps our mental health. For example, if I sit around at home I can get into s moping state where I worry and stress. When I go to work, my mind is engaged and busy, I do a good job, I talk to my work buddies, I get exercise from walking around.

    I’ll be honest, if I was your pregnant girlfriend I would be furious. She is the one who needs support, not you. I’m starting to lose sympathy with you because you refuse to help yourself.
    How was your baby clothes shopping?

  7. #337
    Join Date
    Nov 2018
    Posts
    7,747

    Re: Fearing ALS

    Scass, good luck. I've been trying to explain this to Seymour for weeks.

    I'm about to head into work for an eleven-hour day where I quite possibly won't get a break, attempting to get the basics of library and computer use into the heads of stroppy teenagers and staff who are going to be ratty as hell because we have the inspectors in. I'm not looking forward to it very much.

    I'm not looking forward to it very much, but I'm going in because have a responsibility to my colleagues which, frankly, is much less of a one than to a pregnant partner.

    I'm also going in because as awful as it might be, it's still so much better than sitting around conjuring up gothic little fantasies of all the ways my body might currently be betraying me. I'm not about to drop dead in the stacks, and that's good enough for me.

  8. #338
    Join Date
    Nov 2009
    Posts
    7,300

    Re: Fearing ALS

    I agreed with my homies above, this is beyond self-indulgent Alex - not that you intend it to be nor that you want to be this way. You have a girlfriend expecting your baby and needing your help, she must be terrified right now as you are no longer working and basically laying about without any ability to help her parent. I said to you on PM that the only way I eventually knocked myself out of the state I was in believing I was dying, experiencing symptoms and nobody believed me etc etc (I 'could not move my left side' and had slurred speech and assorted 'serious' symptoms) was by eventually coming to some sort of acceptance that if it was a brain tumour then I had to live with it. A ces la vie attitude. I needed to make sure that my loved ones and family had happy memories of me, I had to get on with living my life and enjoying what was left of it. I honestly thought I was dying and I even wrote letters to my family, not blaming them for not believing me. That was 30 years ago. At the end of the day, none of us, not ONE, knows what tomorrow or even today brings in terms of our health and events. So, I think you should just get on with helping to plan for the baby and start getting out and about - as you were told 'Even people with ALS have to eat, drink, sleep, exercise and live their lives getting out and about......' Nothing else you CAN do at this point.

  9. #339
    Join Date
    Jun 2019
    Posts
    281

    Re: Fearing ALS

    Hey guys I wasn’t talking specifically about me!!

    I just wanted to share a song that expresses feelings we all went through.

    I was NOT referring to my specific case!!

  10. #340
    Join Date
    Nov 2018
    Posts
    7,747

    Re: Fearing ALS

    You're still wallowing, though, and it's not healthy for you or anybody.

    Most of the regulars here fight like tigers to keep their pain and fear and sadness under control, so yes, it gets annoying when others seem to be actively revelling in theirs.

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