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Thread: I am beyond terrified. I think it’s real this time.

  1. #71
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    Jun 2014
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    Re: I am beyond terrified. I think it’s real this time.

    Have you thought about why you are so determined to be diagnosed? How would you fill the void if the fear of ALS were lifted for good? You would need another illness/disease to focus on.

  2. #72
    Join Date
    May 2017
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    103

    Re: I am beyond terrified. I think it’s real this time.

    Not at all. If I actually got over the fear then I could actually get on with my life. In between the previous flares of Heath anxiety I completely went back to normal. I’ve been perfectly fine for the past 2 years and I really thought I had finally beat my problem until I noticed this twitch.
    I promise I am really trying my best to deal with this but it is so difficult. It’s all I think about from morning until night. I really want to be free of this fear but it is difficult. I am trying my hardest. I have moments where I can see through the clouds and I tell myself that I am fine, but it doesn’t last long sadly. I’ll keep working on it.

  3. #73
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    Mar 2016
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    Re: I am beyond terrified. I think it’s real this time.

    Quote Originally Posted by niknakx View Post
    I promise I am really trying my best to deal with this but it is so difficult. It’s all I think about from morning until night.

    I really want to be free of this fear but it is difficult.

    I am trying my hardest.
    ^^^^^^^ Even though it's 'all' you think about morning and night? Where does the trying your hardest bit fit in?

    I’ll keep working on it.
    Sounds like you're not actually working on it at all. Or maybe you want to think about changing the dialogue that you're feeding to yourself (and us)

    It’s all I think about from morning until night.

    This is either true or it isn't but your brain won't give a shit either way. It will respond to what you're thinking and this type of dialogue is just the kind of fodder it craves..

    'But' is one the most commonly used words with health anxiety and there's a pattern where some people trawl through the HA mire in posts, then add on something positive at the end. Sometimes it's to fool the reader into thinking that the person is serious about overcoming HA so that they'll get some sympathy? Sometimes it is meant at the time of writing but the intention falls short of actually doing anything about it.

    Here is the thing: Overcoming health anxiety IS DIFFICULT.

    It's far far easier to come on here and symptom dump and seek reassurance..

    There was a film in the 80s. Fame. Lots of teenagers rolling across the bonnet of cars and dancing in the street. Standard movie stuff you literally never see in real life, but there is a great quote from this film...

    You want fame? Well fame costs, and right here is where you start paying...

    ....in sweat.

    I'll re-write it for HA rather than the art of dance..

    You want to be free from health anxiety? Well recovery costs, and right here is where you start paying...

    ...in (proverbial) sweat.

    You have to pull on those legwarmers (I had two pairs) and a sweatband and be prepared to throw everything you bloody well have at this disorder, and I do mean EVERYTHING!

    You have to try anything and everything and keep going no matter what. If one thing doesn't work? Try something else!

    When I was having my breakdown (due to HA) I was desperate. I never came on here and symptom-dumped, but I was suffering, believe me! If somebody had told me that rubbing myself in fox shit on a full moon would help me, I'd have done it..

    You need to lose the 'buts' in your dialogue. Work only in absolutes. You are going to overcome this. You want your freedom (right?) so you are prepared to graft and for this to take an indefinite amount of time..

    Because what you're aiming for is to be faced with a health issue and not go down that hole.

    Recovery/control of HA isn't being OK because everything is OK. It's being OK when everything is not OK, OK?

    And by 'OK', I mean that being concerned is OK. Scaring yourself shitless? Not OK!

    You never went back to 'normal' because you never addressed the issue. Your HA was merely dormant - waiting for the opportunity to kick your @rse once again. And here we are!

    HA has has several opportunities to kick me in the proverbial flaps this year - things which would have previously sent me spiralling out of control - but this didn't happen because I grafted to control this disorder by understanding anxiety, challenging my thoughts, and reframing situations - so fear/panic never entered into things..

    Most importantly, I faced my fear. That from which this most severe episode of HA came from - which is me dying and leaving my autistic son. Nothing has scared me more. However, with hard work, I've accepted it for the likelihood that it is. I say 'likely' because it's also possible that I could outlive my son, and believe me when I say that if faced with this as a choice, there wouldn't be a micro second of hesitation. I would choose death, and willingly. Having accepted that I won't be here forever, I teach him what I can while I'm here and I know that his brothers would step up if needed. One of my lads works with children with special needs so my autie lad would be in good hands..
    Nik, you don't overcome health anxiety by hoping it goes away. As I said, that's not how this works. You deal with the core of the issue which is almost always the fear of death, dying, or of not being here for our loved ones. Whichever it is with you, this is what you need to address, and you will find that the rest falls into place because acceptance is the foundation upon which recovery/control of HA is built - anything short of this is a temporary fix.

    I won't apologise for my approach. I am passionate about taking HA by the balls because I was so ill. My sympathy to anyone with HA is a given except I know that sympathy, alone, won't get you out of this hell.

    The best people to advise you are the ones who've been at rock bottom and got themselves out, right? That's what I wanted when I was ill. I didn't want sympathy. I wanted the tools to help me free myself, and that's what I want for you, and everybody else currently being held to ransom by their own mind...
    Last edited by NoraB; 28-07-21 at 07:58.
    __________________
    A thought is harmless unless we believe it.

  4. #74
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    May 2017
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    103

    Re: I am beyond terrified. I think it’s real this time.

    Hey everyone, just thought I would give an update on everything going on. I’ve had good days and bad days. I got referred to an ALS specialist and while he thinks it is unlikely to be the disease he is going to do a series of tests.
    My last EMG was just on 3 muscles in my left leg and foot. This time he is going to be performing a full body EMG to see if any damage can be found elsewhere.
    The medication I am on is doing a better job of keeping me calm although I do have bad days where I cry a lot.
    I’ve started getting frequent twitching in my toes at rest and while using the muscle. I also noticed that there is a muscle on my foot that no longer works. It’s only a small movement but I am unable to do it with my toes on my left foot anymore when I was able to previously. Literally no matter how hard I try I cannot use the muscle at all. I’m trying to remain calm. I kept telling myself that as long as I don’t have any clinical weakness then it should be fine. But I now have a muscle that doesn’t work at all, as well as atrophy and twitching.
    I’m hoping for good news but I’m not feeling very positive about it.

  5. #75
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    Mar 2016
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    Re: I am beyond terrified. I think it’s real this time.

    Quote Originally Posted by niknakx View Post
    I’m hoping for good news but I’m not feeling very positive about it.
    There's the HA but...

    Being referred to a specialist doesn't equate to having a disease. In 2019 I was referred to one of Salford's top neurosurgeons who was doing research into a rare and life limiting disease. As it happened, my long awaited rheumatology app came through just before my phone consultation with this guy. I had already been diagnosed with FMS and I could have ignored this diagnosis but it answered all the questions for me. This was at a time when I'd gained control over my health anxiety, and without medication. Had this not been the case I would no doubt have ignored the non-life-threatening (albeit painful and very life affecting) condition and totally submersed myself in the one which would kill me. I would have made every symptom fit. I would have scared myself into another breakdown. One of the hallmarks of this particular disease is a rash and I do have tiny red marks all over my arms and legs (and which are age-related and barely visible). With the disease there's no mistaking this rash but I would totally have made this fit. I would have diagnosed myself long before the specialist had a chance to say yeah or nay. However, HA was no longer controlling me so I was able to make a rational judgement call and I declined to be tested because I knew I didn't have that disease, and he would have known that if he'd have seen me during the consultation..

    The reason I'm telling you this is that I'm trying to help you to see how HA distorts everything. What I'm seeing with you is that you have a foot injury and it's extremely unlikely to injure a part of the body like that and there be no comeback. My C section (12 years ago) healed up nicely on the outside but haunts me internally because there is scarring in there. That episiotomy I had back in the 80s? Those 3 stitches have caused me all kinds of crap after the menopause!

    I'm confident that this is the case with you. ALS is your fear. You are preparing yourself to be told that you have a muscle disease but you should also be considering what your next step is if you get the all clear - because this is the most likely scenario here.

    The other scenario is that maybe you do have this disease? And yes, I am going here because a big part of controlling health anxiety is to accept that things do go wrong with the body and while we can't always control what our bodies are doing, we can control our response. So why not imagine yourself reacting to the news with courage and grace? If the movie of your life was being played on a massive screen in front of hundreds of people, what response would you want them to see? I used to 'see' myself running from consultant's rooms crying - shaking - totally out of control. Now I don't see that. If my thoughts ever do go there, I see myself sitting there calmly saying, 'Ok, so this is real. This is happening. So what next?' And it doesn't even matter if I was to lose it in the consultant's office (I'm human, right?) as long as I can gather myself up again and shift into @rse kicking mode because there's no way that fear is going to write my epilogue!

    Have a think about this?

    What will you do when you have a full body EMG and there's nothing to be found? I had HA. I know that you're convinced they will find this elsewhere. I was 100% convinced I had cancer, but that's because HA is an exceptionally good liar, manipulator, and deceiver..

    All the best to you. X
    __________________
    A thought is harmless unless we believe it.

  6. #76
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    May 2017
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    Re: I am beyond terrified. I think it’s real this time.

    Thank you Nora, truly your words on this forum are incredibly insightful and thought provoking. You really do say some things that make me rethink everything I’m doing and I am so grateful for you.
    You’re right, HA does like to lie to you and distort everything into something worse. I really am trying to be more positive about everything. It is difficult but I really am trying. The other day I was lying on the bed freaking out about twitching I could see in my calf and feet. My boyfriend came and lay beside me and showed me the same part of his body and it was indeed doing the same thing as mine. That did calm me down quite significantly which was nice. I’m hoping this anxiety will keep decreasing and I hope the EMG this week will further help towards getting over this. I really want to go back to worrying about normal things again haha. Like worrying about money or visas haha. Not that I like to worry, but something less life threatening would be nice haha.

  7. #77
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    May 2017
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    103

    Re: I am beyond terrified. I think it’s real this time.

    Hi everyone, just wanted to give an update on everything that’s going on with me. I saw a neurologist who specialises in the disease in August and he gave me a full EMG of my body. He gave me the results then and there and I saw the results on the computer screen. It had normal limits on all the muscles tested including the one which previously showed abnormalities in the first test. He told me that people do just twitch a lot and 99% of the time it is nothing serious. He gave me some muscle relaxers and told me if anything dramatically changes I should come back to see him. But if not then I don’t need to come back.
    That was a month ago, and for the three weeks following this news I went back to normal. Most of the anxiety went away and I was able to start thinking straight again. I even went to my therapist and he was so pleased to hear I was doing so much better.
    However, about 5 days ago the bad thoughts started creeping in again. I’ve been wondering why my results on the tests were so different. Why show abnormalities on one but not the other. It’s now been nearly 3 months since I first noticed the atrophy and twitching, and while nothing seems to have changed in respects to the twitching, atrophy or strength I’m still having doubtful thoughts. I keep trying to tell myself that if it was something bad I would imagine I would notice some form of change in 3 months…but who knows. I’m fighting the anxiety as much as I can at the moment and I am trying to not let it consume me again. Sometimes I feel like I have PTSD of my previous health anxiety scares and I am petrified of feeling that way again. It’s so difficult. Literally nothing physical has changed since I got good results and yet here I am worrying again.

  8. #78
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    Jun 2014
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    Re: I am beyond terrified. I think it’s real this time.

    You saw a neurologist who specialises in your feared disease. The EMG of your body was normal . Now your HA mindset is "missing" having a health issue to fixate upon so the rumination starts up again..

    You need to go back to your therapist now, not the neurologist. It's your choice as to whether you allow your HA to get a grip again after such a positive outcome from your tests which were supervised and read by an expert in the subject.

  9. #79

    Re: I am beyond terrified. I think it’s real this time.

    How have you been doing since? Sounds like you are cleared of ALS so I hope your worries have subsided.

  10. #80
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    May 2017
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    103

    Re: I am beyond terrified. I think it’s real this time.

    Hi HopefulforBSF!
    It’s been nearly 5 months since I first noticed the atrophy and twitching. I have been doing better mentally but I still have bad days for sure. Today being one of them. I keep trying to tell myself that it’s been nearly 5 months now and not much if anything has changed really. I keep debating getting another EMG to see if anything had progressed but I’m not sure if I should or not. I think just being patient is the best thing I can do for now. It’s so hard though. I’m trying to keep positive and think of other things, but it would be nice to not have this circling around my mind so much.

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