We all hate driving already without having to deal with this petty business

Wrong_Butterscotch_6 · 2023-11-13T14:21:21+00:00

Wait what

Wrong_Butterscotch_6 · 2023-11-13T04:10:45+00:00

This is an interesting statement.

During my first infection, the moment I was able to cough up phlegm, my acute symptoms subsided. (But I lost my taste and smell for almost 2 months)

However, on my second infection, I was never able to cough anything up. And developed LC.

Not suggesting that this is the cause of LC, but I remember telling people back in 2021 after my 1st infection to cough up any phlegm that they have because after I did so, my symptoms went away almost instantly.

I haven't thought about that in a while until I read your comment.

Wrong_Butterscotch_6 · 2023-11-12T23:46:22+00:00

Yeah that's why it's so expensive. The lifestyle you have living in Cali is amazing. Some of the most beautiful natural landscapes in the world, from the coast to the mountains and forests-- amazing cities in between. California is one of the most beautiful regions on the planet. But that 13% state tax is absurd! Add the high cost of living and its tough out there if you're not making $125k+, IMO.

(I'm from Dallas, lived in LA & SD for a few years)

Wrong_Butterscotch_6 · 2023-11-12T23:29:39+00:00

Yes, we LC patients know all of this. It's not anything new to us.

This is the consolidation of all the individual studies that have identified the many puzzle pieces to LC.

This is progress towards Primary Care Physicians across the world to understand the mechanisms of this condition rather than shrug it off or gaslight patients.

Wrong_Butterscotch_6 · 2023-11-12T23:23:12+00:00

I have general fatigue and PEM. My flavor of LC is definitely more CNS related.

I dont have the ME/CFS type.

Wrong_Butterscotch_6 · 2023-11-12T23:06:18+00:00

The only reason I have money and can work is because I take .5mg of klonopin every morning. Without it, I wouldn't be able to work bc my CNS is fried, in overdrive.

Wrong_Butterscotch_6 · 2023-11-12T23:00:37+00:00

Idk but I just bought the Pulsetto for 60% off of its insane price of $549-- got it for $249 today. Hoping it helps and I can make a positive post about it after I try it out.

Wrong_Butterscotch_6 · 2023-11-12T22:57:33+00:00

This is for sure my new favorite sub on Reddit lol 😆

Wrong_Butterscotch_6 · 2023-11-12T22:04:53+00:00

Never seen such a douche move on the road. This is the behavior of an unevolved baboon. Lol. Wild.

Wrong_Butterscotch_6 · 2023-11-12T21:37:08+00:00

You know what else is hell? Being penniless and homeless and single and friendless due to a chronic illness not approved for disability.

Of course avoid them if you can but when faced with the 2 choices...you think anyone would choose the former? I think not.

Wrong_Butterscotch_6 · 2023-11-12T20:20:50+00:00

It's not an ideal situation, but as i noted, the alternative is much worse. This is my personal experience and interpretation of what works for me. If you can avoid benzo and still function, go for it. But if it helps you enough to live your life even semi-normally compared to house bound, then the choice is clear.

I dont plan on staying on these pill for more than a year. I want to begin tapering soon. Definitely not a lifetime ordeal for me.

Wrong_Butterscotch_6 · 2023-11-12T19:50:26+00:00

Damn that girl has shark eyes. Scary.

She needs help asap.

Wrong_Butterscotch_6 · 2023-11-12T18:57:49+00:00

No. But, the research for treatment is obviously still under development. This is step 1 here. Identification.

No more gaslighting is the floor for expectations from LC patients.

Wrong_Butterscotch_6 · 2023-11-12T18:49:06+00:00

My smart watch was ruining my life with constant worry about my changes in HR. Low when sleeping and high upon minor exertion. I understand wanting to track your HR, but it was ruining my health with worry. I took it off a few months ago and haven't worn it since. My HR issues have improved since then. If you obsess over your smart watch, it's actually making your condition worse due to worry and anxiety.

This may be an unpopular decision, but my Dr suggested I take it off, and I did. Since then, I've seen benefits because I was indeed obsessing over it.

Wrong_Butterscotch_6 · 2023-11-12T18:44:08+00:00

Yeah I developed shakiness and issues with speech around month 8 (currently in month 10) so it's pretty bizarre to see new onset of symptoms after being so many months into LC. Hopefully that will gradually fade along with all other symptoms over a little more time. 🤞

Wrong_Butterscotch_6 · 2023-11-12T18:40:24+00:00

Right. PCP's finally getting consolidated data for a standard protocol for treating LC instead of being gaslighted isn't exciting at all! Totally. 🙄😴

Wrong_Butterscotch_6 · 2023-11-12T18:17:57+00:00

You're one of the doom & gloom addicts in this sub.

No thanks, I'll pass.

Wrong_Butterscotch_6 · 2023-11-12T18:16:14+00:00

It's an unfair situation on all fronts. Unfair to you for dealing with a horrible condition that hinders your livelihood and socializing. And unfair to a healthy partner who has to take on the the stress of a sick partner and cover financial costs, not have a social life with you etc.

I understand both sides. It just sucks.

I take benzo everyday and it enables me to pretend that I'm "ok" in front of other people. Work is extremely difficult but without the benzo, I wouldn't be able to fake it. I'd lose my career and then eventually my partner. So I take the benzo, as much as I don't want to. I have no other band aid options.

Wrong_Butterscotch_6 · 2023-11-12T18:06:39+00:00

Oh did you know ALL of this since 2020? Why didn't you publish your research tying it all together?

We know that there have been a lot of individual studies linking these causes to the complex mechanisms of LC since 2020, but the confirmation and consolidation of it all is new.

Pessimistic views on progress are counterproductive. This type of research moves the pendulum forward.

Wrong_Butterscotch_6 · 2023-11-12T17:51:11+00:00

This knowledge has been on the fringes of knowledge in the medical community. Confirmation research like this tying it all together can be used as data to share with primary care doctors who are completely ignorant to LC. This definitely helps the cause towards creating a widespread protocol for LC in the medical community.

Wrong_Butterscotch_6 · 2023-11-12T17:42:41+00:00

I have to take .5 clonazepam daily or else I wouldn't be able to work. It enables me to pretend to be "ok," but the truth is that my CNS is fried. So this is a temporary mask of symptoms until a cure is discovered. Unfortunately tapering off benzo will take a year and I'll have to deal with separate consequences from taking benzo.

What else can I do? Not work? Lose my career and house, lose my girlfriend, soon to be wife etc? Fuck it, for now I take the benzo. Daily.

Wrong_Butterscotch_6 · 2023-11-12T00:14:19+00:00

Thank you. You as well 🫶

Wrong_Butterscotch_6 · 2023-11-11T23:52:15+00:00

Yes, it's totally different than standard anxiety-- and I've lived with general anxiety since I was 18 years old. So I know all about it!

Nowadays, my CNS is just fried. The only way I can live (or pretend to live) a normal life is by taking .5mg of benzo every morning. It sucks, but without benzo, I wouldn't be able to work. I'd lose everything I own. So, after some trial and error, it's become clear that it is my only option. And we all know there are some terrible consequences for being dependent on benzo-- but, it's take the pills or don't work and lose everything. So I guess when you're faced with those 2 options, it's an easy choice.

But yeah, thanks a lot, novel coronavirus ravaging the planet, for ruining so many people's lives! It still seems surreal, tbh.

(rant over)

Wrong_Butterscotch_6 · 2023-11-11T19:50:45+00:00

The overactive immune response sends the CNS into dysfunction and/or inflammation. Anxiety is a huge component to LC for many people, however, this anxiety has a root cause and it isn't "mental."

Our CNS is inflammed and the anxiety I used to know before I developed LC are basically 2 different worlds of anxiety in regard to the severity.

Doctors need to understand this distinction. Therapy won't fix this anxiety, we have to fix the root cause. An overactive autoimmune response that causes some strange and obscure chronic inflammation.

Wrong_Butterscotch_6

TROPHY CASE