1. < Post-COVID Recovery & COVID-19

Anyone with LC 4 years

Posted by traceyf @traceyf, Jan 24 5:52am

I have been living with LONG COVID going on 4 years. The day I got my second vaccination, I was walking out of the place sideways, since that day, april14 was my second shot was fine with the first. I actually got covid october 2021 have lost all my energy. I cannot clean my house.I have an aid 30 hrs a week I run out of breath very quickly. I can't walk upstairs. I just turned 60 years old. And I never had any problems like this. I had a very active life went on vacation.all the time now, I don't even want to go out to dinner. It's too much of a hassle, it's a hassle. To take a shower I can't stand feeling sick anymore. I had to get someone to come in and clean my house. I moved into my apartment 3 years ago. And its still not unpacked, I can't do it. I am so down about having this vaccine. I didn't want it but my mother-in-law had cancer. So I got it to keep her safe. They have to come up with some kind of cure for this, because this is not living. I mean I know there are people that are bed-bound, I know there are people That had to quit their jobs. This is the most discouraging thing that has ever happened to me. I just can't take it anymore. My energy is at a 0 level. I see a therapist that does nothing for me But give me antidepressants and benzos . I go to my reg doctor, I request all kinds of tests he does.. They better come out with something soon. It's not fast enough for me. I have 3 grandchildren that I can't even watch because I'm too exhausted. I'm gaining weight like crazy. My hair's falling out my teeth. Went too garbage?My skin is so dry it feels digusting So now I have dentures. I have headaches, I have muscle aches.Diagnosed with fibromyalgia hashimotos ibs sjogrens empty seller syndrome hypothroidism fatty liver gallbladder removed. I've been diagnosed with hydrentitus supertiva . I had some kind of crazy Vasil, vagel heart problem. And was in the hospital, 2 weeks with what I thought was a heart attack. Then I was told it was a vazo vagal attack, never heard of it plus there was tropenine in my blood, which usually only happens when there is a problem with the heart. I'm sorry, this is so long. I'm frustrated. I have no faith in any doctors..at all anymore..they knew it was bad..I wish NY could sue Pfizer. I will not even getva flu shot..My trust in Drs is gone. Please tell me what you guys are going through. Because I feel so alone. Everybody in my family doesn't even understand they think I'm just lazy because its on the inside..if they cant see it..its not there, and it's the furthest thing from the truth. My head wants to do a million things, but my body will not follow. Thanks for listening Tracey

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mclelland1958 | @mclelland1958 | Feb 12 11:27am
In reply to @bigj "Yes, I wish I could remember for how long ?big part of it was memory loss..." + (show)
@bigj

Yes, I wish I could remember for how long ?big part of it was memory loss substantial it’s so hard for me to remember
Before photographic memory, my own business successful now I can barely remember what happened last month or 5 to 10 years ago? Also I was very agitated with everybody And I mean everybody I chewed them out even my son in front of his fiancé really bad where he wouldn’t speak to me for close to a year from there. Agitation has subsided over the years but the following.
AFIB smelling tasting Walking doing things. I would feel robotic thank God I have the support of my wife. She walks with me and that helps I wasn’t able to go to the store which was five minutes away by myself she would have to come with me. It’s like it takes different angles. When able to recover from one it, hits others mind my memory, my taste, my thoughts, but what I notice for me is if I stay away from coffee sugar and just try to do a little bit every day it has been getting better. I’m 60 years plus and what bothers me is that the medical field is denying i’ve been told from different doctors basically shut up / live with it / You need a psychiatrist / We don’t know. I believe they’re too focused on denying so they won’t be overwhelmed
Because they don’t have a cure LC
four years ago they told the whole country that everybody needs to wear a mask and stay 6 feet apart in 60 years plus I never had to wear a mask for the flu fever or any other virus. they know what happened
What really helps if they would make support group so we wouldn’t feel so alone
PS this would originally take me five minutes now it has taken me over 40 minutes to respond, but keep the faith up.

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I understand. It would take me an hour to type your post. Sometimes, I have to leave it for a time and come back. Responding eats up your energy.

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dloos | @dloos | Feb 12 11:36am
In reply to @dac777 "I didn’t know there was a name for it. I know what you mean. I haven’t..." + (show)
@dac777

I didn’t know there was a name for it. I know what you mean. I haven’t sought out any answers because I don’t feel anyone takes me serious or is willing to try to figure it out. It takes more energy to try and go to the doctors then just to try and deal with it. My nervous system definitely hasn’t been the same since Covid. I had it at the end of November 2020. That was no ordinary virus. They will NEVER convince me otherwise.

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I have found all my doctors tire of me when they can’t help. Some are not actually dismissive, but they don’t have anything that actually helps me. I’m sure it is frustrating for them too.

I still go to a few appointments, but less as time goes on. I am three years into this and have been to hundreds (yes hundreds) of appointments.

No, this is no ordinary virus.

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uget1shot | @uget1shot | Feb 14 4:40pm
In reply to @dac777 "I didn’t know there was a name for it. I know what you mean. I haven’t..." + (show)
@dac777

I didn’t know there was a name for it. I know what you mean. I haven’t sought out any answers because I don’t feel anyone takes me serious or is willing to try to figure it out. It takes more energy to try and go to the doctors then just to try and deal with it. My nervous system definitely hasn’t been the same since Covid. I had it at the end of November 2020. That was no ordinary virus. They will NEVER convince me otherwise.

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I have sought answers - and relief - running myself ragged to do so, to no avail. I w tried just about everything. I find it so hard to accept that I have to accept this as my reality for the rest of my life. 😢

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leinaz | @leinaz | Feb 16 12:42pm

I’m 4 years in, was just diagnosed with Long Covid/Covid syndrome after three years of testing and multiple specialists trying to find out what’s wrong with me.
I still have the blurred vision off and on, the brain fog that comes and goes, inflammation, muscle aches, weakness, nerve pain, waves of nausea, fatigue, etc. They can see the white blood cell count in my blood work, it’s real, but I can’t get any solutions. I had two Pfizer shots in 2021 then almost immediately got Covid and I have not been the same since. Before the shots I was hyperactive with almost a photographic memory, kicking butt in my career. Now, I’m just frustrated all the time, because I’m limited. I’m 56, I can do my job, but barely. I’m terrified of being laid off, there is no way I could do any sort of job where I had to punch a clock as my body would betray me.
My immunologist has me on naltrexone and claims 70% of his patients feel better using it. I’ve been on it two months now and I’m not noticing much difference.
I live in AZ. Does anyone know of any doctors in the Phoenix area who specialize in Long Covid/Covid syndrome?

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1 reply
genocurt | @genocurt | Feb 17 6:39am
In reply to @leinaz "I’m 4 years in, was just diagnosed with Long Covid/Covid syndrome after three years of testing..." + (show)
@leinaz

I’m 4 years in, was just diagnosed with Long Covid/Covid syndrome after three years of testing and multiple specialists trying to find out what’s wrong with me.
I still have the blurred vision off and on, the brain fog that comes and goes, inflammation, muscle aches, weakness, nerve pain, waves of nausea, fatigue, etc. They can see the white blood cell count in my blood work, it’s real, but I can’t get any solutions. I had two Pfizer shots in 2021 then almost immediately got Covid and I have not been the same since. Before the shots I was hyperactive with almost a photographic memory, kicking butt in my career. Now, I’m just frustrated all the time, because I’m limited. I’m 56, I can do my job, but barely. I’m terrified of being laid off, there is no way I could do any sort of job where I had to punch a clock as my body would betray me.
My immunologist has me on naltrexone and claims 70% of his patients feel better using it. I’ve been on it two months now and I’m not noticing much difference.
I live in AZ. Does anyone know of any doctors in the Phoenix area who specialize in Long Covid/Covid syndrome?

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There is an expert on long Covid at Mayo Clinic in Rochester
Dr. Greg Vanichkachorn. In fact they have an entire team treating patients with Long Covid. He diagnosed my husband when nobody else believed he had developed long Covid.

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1 reply
kitty2 | @kitty2 | Feb 17 4:30pm
In reply to @genocurt "There is an expert on long Covid at Mayo Clinic in Rochester Dr. Greg Vanichkachorn. In..." + (show)
@genocurt

There is an expert on long Covid at Mayo Clinic in Rochester
Dr. Greg Vanichkachorn. In fact they have an entire team treating patients with Long Covid. He diagnosed my husband when nobody else believed he had developed long Covid.

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Just a response to your post..Dr. Vanichkachorn is no longer at Mayo in Rochester. He has been gone for over a year now. I have tried twice to get an appointment with physicians there since Dr. Van left. They will not see me anymore at Mayo. They really do not give me a reason why, they just send me an email saying they can not see me due to a large patient demand, which is really frustrating, as I have many problems due to my long covid has done to my health.

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