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  1. #1
    Join Date
    Dec 2016
    Posts
    167

    How did you get over the ALS fear?

    Thanks in advance for your replies.

    I am currently dealing with a HA ALS fear. In reading a bunch of other posts on the subject, I see a lot of responses like:

    "I wasted a year of my life on fearing ALS"

    i.e. it seems there are a lot of you that have "been there done that" when it comes to the dreaded ALS Health Anxiety. Many explain it was a very dark period of time before they got over it.

    So what is your advice? How did you get over it? Does it just take time?

    It almost seems like ALS anxiety should be it's own distinct type of health anxiety!

  2. #2
    Join Date
    Aug 2013
    Posts
    20,784

    Re: How did you get over the ALS fear?

    The ALS rabbit hole is deep and narrow. Many get stuck in that hole and it's sad to see. Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, it's one of the most irrational fears of all the fears I see on the boards. When you come to realize how irrational it is, that will be the turning point. How and when that happens is up to you. I've found that no amount of reassurance helps. It's a self realization on your part.

    That's the point of the "been there done that" threads. Those that have been there came to that realization on their own. Hopefully, you will too!

    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/

  3. #3
    Join Date
    Apr 2013
    Posts
    205

    Re: How did you get over the ALS fear?

    I I would say that time helps; obviously due to the longer you go the more you realise your not deteriorating like typical ALS patients.
    I still have twitches I have them daily and at the moment I feel them in my side. But I've now learnt to accept them and ignore them. If you read my posts I feared als around 3. Years ago.

  4. #4
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Fishmanpa View Post
    Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, [I]it's one of the most irrational fears of all the fears I see on the boards.
    Good point. I'm guessing the magnitude of irrationality with this fear is directly proportional to the atrocity of this particular disease.

    I agree my fear is very irrational (I do not have any of the three first diagnostic symptoms), yet I am unable (yet) to let go of the fear because it is so very frightening to me.

    I had a MS fear/scare a few years back and although it was a very low point and put me into anxiety mode for months... I was not as frightened of that disease overall and thus it was a more rational fear. (I had several valid symptoms for that disease at the time)

    Thanks again for your reply.

  5. #5
    Join Date
    Nov 2015
    Posts
    377

    Re: How did you get over the ALS fear?

    Hey there,

    I too wasted a year to 'the ALS fear'! It's such a funny one isn't it, because you know logically there's nothing to worry about. But that just illustrates the odd nature of the illness, which is basically a form of OCD where you believe irrational things with one part of your brain whilst logically knowing those irrational things won't come true with the other part.

    I guess that medication and mindfulness have helped me, and it's great that you are able to see through the fear with the rational part of you!

    Good luck xx

  6. #6
    Join Date
    May 2016
    Posts
    417

    Re: How did you get over the ALS fear?

    Time is the big thing as mentioned. Firstly twitching is almost never the first symptom plus if you've been twitching for several months/years and nothing's happening then it isn't ALS.

  7. #7
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Funny, twitching is not anything I have experienced. I know that is the one symptom that most freak out about. I've never had it. I have decreased dexterity in my left hand (index finger and thumb) that seems to proliferate "when I think about it" and also some mild cramping in left hand. Also perceived weakness in my left arm which is completely anxiety related.

    This all came about after someone I knew was diagnosed with ALS.

    And yes, I can rationalize but unfortunately as of yet, I am unable to believe the rationality for a prolonged period of time. I seem to have a "panic time" every day that comes out of the blue when I try to do something and notice my index finger feels like it did it differently than usual or I'm relying on other fingers more for tasks. Sends me in a downward spiral. I keep hoping for when I can get through one day without that panic. It's so uncomfortable I fear it from the moment I wake up.

    Thanks guys!

    ---------- Post added at 18:10 ---------- Previous post was at 18:07 ----------

    Quote Originally Posted by beatroon View Post
    Hey there,

    I too wasted a year to 'the ALS fear'! It's such a funny one isn't it, because you know logically there's nothing to worry about. But that just illustrates the odd nature of the illness, which is basically a form of OCD where you believe irrational things with one part of your brain whilst logically knowing those irrational things won't come true with the other part.

    I guess that medication and mindfulness have helped me, and it's great that you are able to see through the fear with the rational part of you!

    Good luck xx
    Well said, I do think I have a bit of OCD so that fits. I started meds a week ago and downloaded a couple mindfullness/relaxation apps for my phone and they have been helpful. I try to do them every day.

  8. #8
    Join Date
    Nov 2015
    Posts
    298

    Re: How did you get over the ALS fear?

    Quote Originally Posted by panicperson View Post
    I I would say that time helps; obviously due to the longer you go the more you realise your not deteriorating like typical ALS patients.
    I still have twitches I have them daily and at the moment I feel them in my side. But I've now learnt to accept them and ignore them. If you read my posts I feared als around 3. Years ago.
    I would fully agree with this! ALS patients deteriorate really fast.
    Once I had my twitches for 3 months but I realized nothing else was wrong with me, I figured it wasn't ALS. I still had that fear now and then, but now over a year later I still have the occasional twitch and I know for sure now it isn't ALS.

    Also knowing that muscle twitches is one of the later stages of ALS and numbness/tingling etc... isn't a sign of it either, not being physically able to move a certain part of your body is a sign.

    Once time passed, and I got a proper picture of what the symptoms of ALS actually are, my fear disappeared.

  9. #9
    Join Date
    Dec 2012
    Posts
    83

    Re: How did you get over the ALS fear?

    I too wasted a year or so on an ALS fear about 10 years ago. Some words stick out in your post: "When I think about it" and "perceived."

    That was the thing with me and the ALS fear. The more I thought about it, the clumsier I became. And, in turn, my twitching would get worse.

    After about 8 months or so and realizing I wasn't getting any weaker, the ALS fear just sort of faded away. It will pop it's ugly head every so often but goes away just as quickly.

    Quote Originally Posted by emmegee View Post
    Funny, twitching is not anything I have experienced. I know that is the one symptom that most freak out about. I've never had it. I have decreased dexterity in my left hand (index finger and thumb) that seems to proliferate "when I think about it" and also some mild cramping in left hand. Also perceived weakness in my left arm which is completely anxiety related.

  10. #10
    Join Date
    Jan 2015
    Posts
    276

    Re: How did you get over the ALS fear?

    Sad to say for me it was time. The longer you go on without weakness the better you feel finally u realize that you wasted a year worrying about something u don't have lol. Stay busy and exercise. That helped distract me from worrying

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