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Thread: ALS fear going stronger than ever - Suicidal

  1. #1
    Join Date
    Apr 2015
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    210

    ALS fear going stronger than ever - Suicidal

    So let me start by saying that twitching basically does not scare me anymore.. ( for the most part.) I have accepted this as part of anxiety and this is fine.. in fact I began twitching 5 years ago.

    However, since January my symptoms have only been getting worse - to a point that petrifies me.. here we go...

    - My right hand began feeling weak and like it had lost feeling ( was tingly? but not in an asleep kinda way.) Also get allot of twitching in this hand- however no progressive weakness - can still hold things ( with some pain)
    - My left hand pointer finger recently began to feel jammed ( this REALLY scares) I did not jam it but it has this painful horrible sensation and FEELS weak
    - My shoulders constantly crack and pop - so do my wrists.. but not in a normal way.. but in a way that they feel like they are going to like pop out of the socket or something. If I lay on my right arm when I am trying to rest I also feel like.. weakness/ exhaustion I was deeply concerned with atrophy because this can cause popping but I have been checked by a sports medicine doctor who said this is all tension and he did not detect any weakness/atrophy.
    - FINALLY- Most recently - my jaw is being weird - I know I have TMJ but lately it feels so tight and also like jerky in it's movements if I talk to much... also feel like I am on the verge of yawning sometimes
    - nose bleeding - sometimes scared I can feel liquids in my nose.. but no real evidence of this
    - legs feel tired and cramps for no reason sometimes

    I think it might be important to note that this stuff feels a bit progressive.. I began in January with just twitching and it seems to have escalated.. I also feel my arms have gotten allot thinner but I have not in reality lost that much weight.

    Honestly, I have been checked by 3 doctors and all say I am ok.. in fact they have said I am strong and some have asked if I am an athlete but... I can't believe them. I don't see how these symptoms can be explained - as well no one is really trying to explain them.. other than saying it is stress and you are anxious - take medication ( recently I have begun doing so. ) How could stress cause all of these muscle issues? I am so scared and I just keep imagining my descent into disability. This would be impossible for me as I am an artist and musician - a very physical person - I like to create. I couldn't live with ALS. I have been suicidal many times in the last month and my partner who I love and basically want to marry almost left me last week because I have been having such bad outbursts at him and have really lost touch with who I am. I also had to reduce my hours at work due to stress.

    Can anyone offer advice or reassurance? I am seeing a Neuro next month but the wait is hard and I am scared everyday to do literally anything.

    Would love to hear from PopeJoan if you are still around <3


    Lots of love,

    Lilly
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  2. #2
    Join Date
    Dec 2018
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    73

    Re: ALS fear going stronger than ever - Suicidal

    Failing, not feeling.

    Read through everything you just wrote. You use the word "feel" a lot. ALS is not feeling. It's FAILING.

    Honestly, it sounds like a bad case of hypervigilance. The good thing is it'll pass, eventually. The bad thing is you have to convince and prove to yourself there's nothing wrong. Anxiety is well known to cause aches, cramps and twitches. Nothing what you have written seems out of the ordinary for an axiety sufferer at all.

  3. #3
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    Re: ALS fear going stronger than ever - Suicidal

    Are you receiving any therapy for your anxiety?

    Yes, ALS is a scary disease, but that's all the more reason to be glad, because you don't have it.

  4. #4
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    Apr 2015
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    Re: ALS fear going stronger than ever - Suicidal

    Has anyone else experienced this weird popping/cracking stuff that is happening with my shoulders though? This is my main issue... :( I know I haven't failed and I am grateful for that.. I guess I just fear it is the beginning.. like the stiffness phase? Or the fact that weakness in shoulders wouldn't cause much failing? since other muscles can over compensate..? I have done too much reading ugh.
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  5. #5
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    Apr 2015
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    Re: ALS fear going stronger than ever - Suicidal

    Hi BlueIris,

    I haven't gotten counselling for this yet.. I guess I am scared it will be useless until I believe this is caused by anxiety.. the thing is the symptoms are real and the doctors could hear the clicking and stuff but are putting it down to anxiety/tension. I guess I am afraid that I am being placed in a box.. because I am open with doctors about my anxiety disorder.
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  6. #6
    Join Date
    Dec 2018
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    Re: ALS fear going stronger than ever - Suicidal

    I have been down the ALS rabbit hole more than once and I never once read that "clicking shoulders" is a symptom of ALS. The shoulder joint is a complicated and well used part of the body. Of course it will click sometimes. It would be weird if it didn't.

  7. #7
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    Apr 2015
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    210

    Re: ALS fear going stronger than ever - Suicidal

    KrankerMann,

    Thanks for your reply.. I guess what bugs me is that I never had this before January.. when the twitching was really amped up.. :( I have never experienced this weird cracking/popping - not to this extent at least. I am praying that the doctor is right and that it is severe tension and muscle tightness.

    Not to trigger anyone but it can be associated with ALS as if your muscles atrophy then they can cause clicking due to bone on bone rubbing.. however, yes.. no one with ALS on the forums really validates this when people ask. ( I have never posted and wouldn't due so but just lurk around cause those sites come up every time I google my symptoms. )
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  8. #8
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    Re: ALS fear going stronger than ever - Suicidal

    Please READ THIS.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  9. #9
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    Nov 2018
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    Re: ALS fear going stronger than ever - Suicidal

    The therapy will help strengthen your willpower and reasoning skills so that you can look at things rationally again.

  10. #10
    Join Date
    Apr 2015
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    210

    Re: ALS fear going stronger than ever - Suicidal

    Hey Fishermanpa,

    I have read it.. but I think I might need some of your tough love..about my symptoms lol.. I can't get this through my head.
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