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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maddie87 | @maddie87 | Apr 8 7:53am

Hi Tracey,
You describe me to a T. Just so you know you are not alone. I am 4 years also. I've given up on Doctor's because they really don't have the answers yet. I see many articles on research h being done, whi h is encouraging, but with all government cuts going on now it's hard to tell where they stand. There is research being done all over the globe so it5still very possible for a cure.
I have heard of a number of people that have LC and then it just disappeared
I don't know anyone else personally thar has it, so yes you feel alone.
I wish you well, all of us
Linda

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lkirnbauer | @lkirnbauer | Apr 8 8:33am
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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Have you had your Thyroid Levels checked? I’m not a doctor, but I had horrible body inflammation, brain fog, fatigue that was terrible. My daughter had a total Thyroidectomy 2 years ago and she asked me to have my Thyroid levels checked, even through I never had Thyroid issues. To my surprise and more importantly my doctor’s surprise, I have Hashimoto’s with Hypothyroidism! Off the charts numbers for Hashimoto’s, so I started researching what to do and found a book on Hashimoto’s to read by Izabella Wentz, M.D. and began eliminating gluten, dairy and soy, which she suggests to do with Hashimoto’s. I lost the inflammation in my body and have way less brain fog. Hashimoto’s is an autoimmune disease and if you treat your body well, your symptoms will get less and less. Start by having that thyroid checked and see what your levels actually are. You might be surprised as I was. Good luck and good health!

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bigj | @bigj | Apr 8 11:09am
In reply to @po777 "I am at almost 4 years no taste/ smell, brain fog, irritability. I have not found..." + (show)
@po777

I am at almost 4 years no taste/ smell, brain fog, irritability. I have not found one doctor who offered any kind of assistance. I was told by all that they don’t know. I do not personally know anyone in this condition and it is very frustrating and depressing especially to not be able to taste one thing for all this time and to either have weird smells or none.

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Welcome to the club
Same here they the Drs, just brush me off .
What I do is workout eat right an TRY to get 8 hours sleep it has gotten better .

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1 reply
PO777 | @po777 | Apr 8 3:31pm
In reply to @bigj "Welcome to the club Same here they the Drs, just brush me off . What I..." + (show)
@bigj

Welcome to the club
Same here they the Drs, just brush me off .
What I do is workout eat right an TRY to get 8 hours sleep it has gotten better .

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Do you have taste/smell?

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mspaminreno | @mspaminreno | Apr 26 5:43pm

I'm 83 years old and caught Covid 19 in October 2020. I had what's referred to as a 'mild case' meaning I didn't wind up in the hospital. I had my first case of PEM (post exertional malaise) 6 weeks after my original infection. I take *A LOT* of supplements; something to support every system in my body. I was extremely active in my previous life and now I'm happy to be able to manage a short shower; do some light housekeeping (now and then); feed my kitty; manage my meals and get together with a friend occasionally over lunch. I could go on and on...but, you get the picture.
For sure, I am better. In addition to my nutritional/supplemental needs, I have been forced to change my life-style (no more multi-tasking, etc.) and I practice yoga nidra 1 or more times per day which definately helps my nervous system and gives me back some energy. I continue to believe I can get back to feeling normal. Time will tell.
I get a lot of help from some free YouTube Channels and highly recommend: Gez Medinger (he's one of us), Healing Gems (let's try to get her to 1000 'likes' so the ads will be turned off) (Gemma is also one of us), then, there's Raelan Agle who is recovering from CFS and lastly check out Bateman Horne Center.
My best to all,
Pam

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tammy1113 | @tammy1113 | Apr 27 10:29am

May 3rd will mark four years for me. I feel exhausted all the time and am frequently sick; I rarely go a month without getting a sinus infection or a cold. I experience silent migraines, restless legs, and my toes often feel heavy. Additionally, I struggle with severe anxiety, depression, and PTSD. The challenges seem endless.

I don't only have myself to worry about—I also have my son. He was delivered at 29 weeks on May 5th, 2021. Afterward, I was placed on ECMO and put into a coma. He has chronic lung disease and is often unwell, as well as dealing with ADHD and PTSD. I hope and pray that one day there will be a cure for both of us.

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1 reply
myotisecolo | @myotisecolo | Apr 27 10:57am

I was a health-nut (man); ran 6 miles every other day, weight training, played sports and worked. I was rarely sick and was my family's primary caregiver when they were sick. After being hospitalized for Covid pneumonia I returned home to a different hell.
I can barely walk, my memory is gone, my health is gone. I was recently diagnosed with cancer. If it wasn't for my wife I would literally be dead . Overall I may be 8-10% better than year 1. I'm just not improving fast enough.

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1 reply
law59 | @law59 | Apr 27 11:08am
In reply to @tammy1113 "May 3rd will mark four years for me. I feel exhausted all the time and am..." + (show)
@tammy1113

May 3rd will mark four years for me. I feel exhausted all the time and am frequently sick; I rarely go a month without getting a sinus infection or a cold. I experience silent migraines, restless legs, and my toes often feel heavy. Additionally, I struggle with severe anxiety, depression, and PTSD. The challenges seem endless.

I don't only have myself to worry about—I also have my son. He was delivered at 29 weeks on May 5th, 2021. Afterward, I was placed on ECMO and put into a coma. He has chronic lung disease and is often unwell, as well as dealing with ADHD and PTSD. I hope and pray that one day there will be a cure for both of us.

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Oh @tammy1113. Your challenges and strength are beyond inspirational. Your son is beyond blessed to have you, as my granddaughter is with her momma! My sincerest quickest healing wishes🌈

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mimilc25 | @mimilc25 | Apr 27 3:44pm
In reply to @myotisecolo "I was a health-nut (man); ran 6 miles every other day, weight training, played sports and..." + (show)
@myotisecolo

I was a health-nut (man); ran 6 miles every other day, weight training, played sports and worked. I was rarely sick and was my family's primary caregiver when they were sick. After being hospitalized for Covid pneumonia I returned home to a different hell.
I can barely walk, my memory is gone, my health is gone. I was recently diagnosed with cancer. If it wasn't for my wife I would literally be dead . Overall I may be 8-10% better than year 1. I'm just not improving fast enough.

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So sorry to hear this. It’s such a difficult illness. Wishing you luck and big improvements.

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suesmithrn | @suesmithrn | Apr 27 9:24pm

My experience is very much like your's . I saw three doctors - they had no help. Then a new brilliant doctor came to town. After being in severe pain for a year and six months she had a very different approach. Now most days are pain free. Her name is Caroline Flowers MD Safford AZ.

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