Reducing anxiety and accepting death

[fishmahboi]

Hello, just from my post about the possibility of having CJD (haven't had any jerky movements and I made an appointment with the doctor today as well), I was wondering if you guys could coach me through this because its been bothering me for a while.

Essentially, I think the big reason for my anxiety surrounding CJD was due to having strong death anxiety and anxiety of the future. I like to think that the fact that we don't exist anymore essentially means that I don't have to worry about death, but I constantly worry all the time. This is especially the case now when I think I have the disease since my legs also feel a bit like jelly when I walk (though I am twitching less). I want to tell myself that I can just live in the present for the next four weeks and maybe commit suicide to die in dignity if it turns out that I have CJD, but I can't get my body to accept that it will die in four weeks. I contemplate the scenario, but the fear just wont go away. Is repression seriously the only option or is there another way, does it take time?

[axolotl]

The first thing you have to recognise is that focusing on one rare disease is pointless. You haven't got CJD. You vastly probably won't ever. Your anxiety has picked a bizarrely random thing to dwell on.

That's OK, we all have our bizarrely random things our anxiety makes us dwell on. But you have to start reminding yourself that, that this CJD-obsession is daft and weird and based on faulty logic and even get to a point where you can almost laugh at the fact your anxiety is being so ridiculous it's making you think of a super-rare brain disease mainly old people get because your legs are a bit wobbly.

And essentially, you know you have anxiety. That's why you're here. And any symptom that can be ascribed to anxiety should always start with anxiety as the starting point for "diagnosis". Just like I have asthma, and when I get a bit wheezy I don't start looking at lung cancer as a possibility because I already have an explanation. Likewise, and our health anxiety wants us to forget this, if we get twitches, aches, wobbles, heart jitters, tingles, forgetfulness and the rest we already have an explanation for this. But health anxiety isn't rational and makes us forget this - but we have to keep reminding ourselves.

The question about fear of death is a much bigger question. I don't get that far, my fear is getting it wrong. I think my fear is ruining my fairly cosy life by not monitoring my body correctly. I rarely get as far as actually thinking about death. But I think that question may be best talked through with a mental health professional if possible.

The fact is though - dark and hard as it is - that we will all die one day. But we can't predict how, or when. We can worry about the specifics of CJD, or lung cancer, or brain tumours, lymph nodes, or weird freckles, or whatever, but picking one specific thing to get obsessed with is like pretending you can predict the lottery numbers. Part of HA, I think, is a irrational need for certainty, every time we check our bodies or get obsessed with a particular disease or illness we are trying to seek safety, but in a really destructive and counterproductive way.

As I say professional help is probably needed. I sound like I know what I'm talking about, but I'm in my own place with HA at the moment and am on the waiting list for CBT. When you see the doctor don't just make the conversation "Do I have CJD", "no you don't", but talk about all this and how you're feeling. Good luck.

[axolotl]

You never replied to this, just checking in how you're doing?

[TinkrTonkr]

You're 23 right?
From what I know (yes I've been obssessed with that disease before) is that CJD is a very rare disease affecting only 1 people out of 1 million every year.
Most of the times it strikes around 60 years old.
There is a variant that strikes earlier but it is usually caused by eating contaminated beef, and since the 90's there are strict rules that avoid you eating that.
Trust me CJD is really very rare and there's no point in worrying about it just 'cause you twitch and have a weird leg, like you describe. I twitch, have stiff legs sometimes, have anxiety, depression, even some vision problems, but I'm not worrying about that, because I know anxiety causes this and we all know you (and me) and other people here have anxiety.
Anyway, live your life, if it is indeed CJD you will know very soon because it progresses very fast, if it was CJD you would have SERIOUS issues in 1\2 months. So live life, distrack yourself and if nothing serious comes up in the next couple of months you can rest assured you don't have CJD, which you don't have of course.

[axolotl]

You're 23 right?
From what I know (yes I've been obssessed with that disease before) is that CJD is a very rare disease affecting only 1 people out of 1 million every year.
Most of the times it strikes around 60 years old.
There is a variant that strikes earlier but it is usually caused by eating contaminated beef, and since the 90's there are strict rules that avoid you eating that.
Trust me CJD is really very rare and there's no point in worrying about it just 'cause you twitch and have a weird leg, like you describe. I twitch, have stiff legs sometimes, have anxiety, depression, even some vision problems, but I'm not worrying about that, because I know anxiety causes this and we all know you (and me) and other people here have anxiety.
Anyway, live your life, if it is indeed CJD you will know very soon because it progresses very fast, if it was CJD you would have SERIOUS issues in 1\2 months. So live life, distrack yourself and if nothing serious comes up in the next couple of months you can rest assured you don't have CJD, which you don't have of course.

All good advice, and worth repeating. However from other posts the OP the dread of CJD is 100% arbitrary, and he's already moving towards ALS, dementia and other ludicrously unlikely things for a 20-something to even think about, let alone fall into a spiral of panic about. Reassurance about CJD isn't the key here.

He needs professional help for the underlying dread.

[TinkrTonkr]

All good advice, and worth repeating. However from other posts the OP the dread of CJD is 100% arbitrary, and he's already moving towards ALS, dementia and other ludicrously unlikely things for a 20-something to even think about, let alone fall into a spiral of panic about. Reassurance about CJD isn't the key here.

He needs professional help for the underlying dread.

Unfortunately I'm in the same boat as the OP, I worried about ALS for about a year and now I'm moving into Multiple System Atrophy because I have a urinary issue (ridiculous I know there are no recorded cases of multiple system atrophy at 20 years old)
Funny that the urinary issue started right after I read that it could be a early sign of Multiple System Atrophy, the mind is very powerful.
However last few days I've made a few decisions to help me, i stopped googling and promised myself i will never do it again, that's a first step.
Please OP, stop googling, seriously. You will find more and more deadly diseases to worry about and suddenly you will get the symptoms of those diseases. Then you will worry even more and so on. So first step is stop googling, and then if you have symptoms that bother you go to a doctor and trust them. They are professionals and know what they're doing. I was quite convinced i had ALS early this year, I went to a neurologist who told me "no way, you don't have it at all!" of course i doubted him, and of course he was totally right.

[fishmahboi]

Thanks for the support guys. I'm still going to the GP and will be going to a neurologist at some point (probably the next month or two). I did a blood test recently as I seem to be having trouble standing still (I sway when I have my feet together and I have to use the edges of my feet to make sure I don't fall) and I smelled burning a few times on Monday and yesterday even though there was no obvious source of a flame (though this seemed to occur outdoors).

I'm also getting an ultrasound on the coming Wednesday due to a strange pulsation that is occurring in my stomach. I thought it was Belly Dancer's Dystonia at first because I googled muscle spasms in the stomach, but my GP thinks that the pulsation is normal and is coming from my Aorta.

At this point, I'm just keeping a close eye on my symptoms as I don't want to reach the akinetic mutism stage of the disease. When I die, I want to be the one ending the life, I don't want to be lying in a bed screaming and wailing.

[TinkrTonkr]

Stop, you're not going to get to the akinetic mutism stage of "the disease" because you don't have.
There's 0,000000000000000000000000000000000000000001 chance you have CJD.
Better chance of getting hit by lightning twice, survive and then get hit by 2 asteroids in the same day. Really.

[fishmahboi]

Stop, you're not going to get to the akinetic mutism stage of "the disease" because you don't have.
There's 0,000000000000000000000000000000000000000001 chance you have CJD.
Better chance of getting hit by lightning twice, survive and then get hit by 2 asteroids in the same day. Really.

I'm aware that the chances of me actually having CJD are extremely low, but it does strike young people in the same way as it does the old, which is why I'm concerned and am currently thinking that my thumb slowly moving by itself two weeks ago was a partial seizure rather than an actual twitch.

[TinkrTonkr]

I'm aware that the chances of me actually having CJD are extremely low, but it does strike young people in the same way as it does the old, which is why I'm concerned and am currently thinking that my thumb slowly moving by itself two weeks ago was a partial seizure rather than an actual twitch.
No it doesn't, it's incredibly rare at a young age, a quick search shows you there have been maybe 2 or 3 cases reported worldwide!
Do you know what a seizure is?!!
A thumb moving by itself might have been a twitch or a tremor? but a seizure? no way!
This disease is incredibly fast by the way, you would have many symptoms by now and maybe you would be unable to care for yourself. You wouldn't be posting here if you had this disease you would be dying!
CJD in younger people (before 40) is really incredibly rare!
Can you have it? Sure you can. People aren't immune to diseases you can get any disease but why worry about it when all you have are minor symptoms that can easily be asociated with anxiety?!!!

---------- Post added at 15:24 ---------- Previous post was at 14:54 ----------

I'm a medicine student, I don't have much experience yet but I can tell all symptoms you have are anxiety and possibly a very common condition called Benign Fasciculation Syndrome (BFS). I have it too and I can tell you the kind of twitches\jerks\tremors whatever are really weird, they can be fine, big, small, seen but not felt, felt but not seen they can be almost anything. But rest assured they are benign and nothing to worry about and definitely not a seizure.
Also with CJD dementia is the first symptom, and by dementia I don't mean forgetting something ocasionally that is very common in anxiety and even in non-anxious people, dementia is something like Alzheimer you don't recognize your family you don't recall what you did minutes ago. Of course now that I said this you're probably starting to think you have this symptom. Please, don't Google. I'm completely certain you don't have CJD. Please try to distract yourself and you will find that a couple months will pass and nothing changed, then you will know you don't have CJD, because 2 months in CJD almost takes you to death (it's that fast)

---------- Post added at 15:36 ---------- Previous post was at 15:24 ----------

Just so you have an idea I read this in an article "40% of people with CJD die within 4\5 months, 50% survive up to one year and only 10% live more than 1 year"
Also in the same article "After the appearance of the first symptom typically it takes 1\2 months until the person becomes unable to care for himself"

Please stop worrying about this. I am a worrier I admit and like you I tend to worry about stuff too, but this disease is too rare to even worry about.

[axolotl]

I hate to say this, but there's a pattern of some posters that isn't to come on here to get reassurance or advice about anxiety but just to go "woe is me, my days are numbered, you'll all see when I'm proved right".

You categorically do not have CJD, and I think really you know that deep down, which is why you're talking about it on a forum for hypochondriacs.

[fishmahboi]

I hate to say this, but there's a pattern of some posters that isn't to come on here to get reassurance or advice about anxiety but just to go "woe is me, my days are numbered, you'll all see when I'm proved right".

You categorically do not have CJD, and I think really you know that deep down, which is why you're talking about it on a forum for hypochondriacs.

Sorry, it just feels like I do and that's why I'm constantly on edge about my symptoms. Like yeah at this point it's likely that I don't have CJD since I'm not having any sort of hallucination and my walking has improved along with the absence of tremors.

However, some symptoms are still present. I can't seem to sit down without this odd sensation of being pushed forward and back. In addition to this, I seem to have visible pulsations on my legs, stomach and the right part of my neck. They're all rhythmic as well, but maybe the ultrasound I'm getting on Wednesday will show why I'm getting these...

[Fishmanpa]

You categorically do not have CJD, and I think really you know that deep down, which is why you're talking about it on a forum for hypochondriacs.

Agree 100% Unfortunately, as with other posters, nothing said will really help unless the poster accepts their anxiety is the real issue. They'll just keep going around and around the rabbit hole.

Good luck and best wishes....

Positive thoughts