Who here have LC so bad they can’t work or hardly leave the house?

Posted by kellysmail2016 @kellysmail2016, Oct 1 7:39pm

Fatigue, pain and edema especially.

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I've long COVID got it in 2020 diagnosisd with it in 2021 in COVID clinic... I was a bus driver for 25 years ..
It started off with my breathing then went to my heart
Then my brain .. I ended up
Medically retired and pensioned off ... At moment now few years on I'm alot better driving for half HR , drains me and energy goes so have to have a lie down .
if too long on my phone or computer it drains me ... If someone bombards me with questions my brain shuts down, need at least 8/10 hrs of sleep otherwise I don't function the next day... Without Coffee can't function ,, eyesight and hearing has got worse .. hopefully some of this helps you...

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Sorry to here. Almost the same here. Luckily, I guess. I retired in 2022. Go to Banner Long Covid Central AZ end of October.

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Hearing, eyesight and digestion terrible since Covid 2022. I suppose long Covid. Hard to get a real diagnosis. All doctors I have seen (many) prescribe vitamins and supplements that do nothing to mitigate what has happened to me. I went from a very active life to rarely leaving my house. My condition makes me too dizzy and disoriented to live a normal life.

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@david1970

I've long COVID got it in 2020 diagnosisd with it in 2021 in COVID clinic... I was a bus driver for 25 years ..
It started off with my breathing then went to my heart
Then my brain .. I ended up
Medically retired and pensioned off ... At moment now few years on I'm alot better driving for half HR , drains me and energy goes so have to have a lie down .
if too long on my phone or computer it drains me ... If someone bombards me with questions my brain shuts down, need at least 8/10 hrs of sleep otherwise I don't function the next day... Without Coffee can't function ,, eyesight and hearing has got worse .. hopefully some of this helps you...

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Thank you David. Sorry to hear it but it’s so hard to find others that are experiencing LC. I looked for a while and found this site a couple months ago. I am creating a log of cases to show my Dr. I want others to not think of me as I am. Seriously sick. And not the only one!!!

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@donaldb4545

Sorry to here. Almost the same here. Luckily, I guess. I retired in 2022. Go to Banner Long Covid Central AZ end of October.

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Thank you Donald. I had to ask for more details but if you can, it’s appreciated. I’m making a log of all of us that I can. For my Drs to see to show how bad this disease is. Help is appreciated and sorry you are ill.

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@dloos

Hearing, eyesight and digestion terrible since Covid 2022. I suppose long Covid. Hard to get a real diagnosis. All doctors I have seen (many) prescribe vitamins and supplements that do nothing to mitigate what has happened to me. I went from a very active life to rarely leaving my house. My condition makes me too dizzy and disoriented to live a normal life.

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Thank you as well!!! I completely get the part of not leaving your home. I hated staying home prior. Slept 5-6 hours a night and always on the go. Now, if I go out 3-4 hours I’m in bed for 3-4 days.

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Hi, I’ve discovered this site last year December and was amazed how many others are suffering.
I had Covid twice, first time in Feb ‘21 and then in Aug’22. My symptoms consist of; heart palpitations (elevated heart rate just sitting down, skipped heart beats and fluttering) lightheadedness, digestion issues, nerve pain, muscle twitches, congestion in my sinuses and ears, blurry vision, hearing loss, pins and needles sensation all over, in my head all the way to my toes, I constantly feel like I have a head cold and balance issues, I feel like I’m drunk when I walk, I’ve been like this for three years. These symptoms at first would come and go, they would seem to fade for a few weeks and come right back but after the second infection it’s pretty constant.
I’ve seen several Physicians; two different Cardiologists (heart disease and electrophysiology) Gastrologist, ENT, Neurologist, Neuromuscular and my PC Physician. Numerous test; heart monitors, EP Study, Transesophageal, MRI’s, CT scans, upper endoscopy, colonoscopy, stress test, echocardiograms, EMG test and they found nothing. The heart monitors did show some disruptions but nothing serious (their words). I found a long Covid Recovery clinic and the doctor said I have symptoms of Dysautonomia (POTS) but I have not been officially diagnosed with LC. Other than my LC Physician none of my other Physicians want to seem to connect my symptoms to Covid. I haven’t worked in over two years after my second infection, my symptoms are very distressing and debilitating. Thank goodness I have a supportive family and a support group that my LC Physician put me in contact with, we meet every single Thursday via Zoom, helps me to navigate through this. I don’t cry as much as I use too but I struggle everyday and I mean struggle EVERYDAY, I try and push through the bad days and try to enjoy the not so bad ones. I was so active, working, going to the gym, jogging or power walking 6-8 miles every week, now running an errand is daunting and I “crash” a lot. It’s so disheartening, grieving a life I no longer have. But trying to accept this new normal and be grateful of the little things I can do.
Wishing you all better health and happier days.

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LC as of Sept. 2020. Diagnosed as of July 2023 at COVID Recovery Clinic (Boise, ID). Prior I was walking 3-7 miles a day and in very good health - best in a while...
Overnight from one day to the next, persistent original symptoms from day 1... Chest pain/pressure (like an elephant sitting on my chest); Shortness of breath (like breathing through cheesecloth); With little to no exertion, often while sitting... Heart palpitations-racing/spikes (up to 200beats per min)/dips (down to 40 - usually following the spike), followed by post exertional malaise and crushing fatigue; severe dizziness - unbalanced (have yet to fall but have to steady myself whenever/wherever I walk); severe brain fog (cannot focus, short-term memory loss, can take me an hour to read an article - more if it is technical, always searching and rarely finding the words to carry on an adult conversation, a career bookkeeper and now cannot do the simplest math without a calculator); depression and anxiety; via tilt table test diagnosed with POTS and Postural Orthostatic Hypotension; Other minor yet debilitating symptoms - vision; awful taste in my mouth; strange smells - dead fish, peanut butter; hearing music and radio broadcasts when there were none.

Through trial and error medication/physical/psycological therapies, though they all pop up their heads in some degree or another, my current most debilitating symptoms after 4 years is severe brain fog and dizziness.

I am in the process of applying for SSDI - Social Security Disability.

I'm sure there is more I can add, but this should give you an idea of my LC Journey.

To this day, though, I can say all is well with my soul. God is good. In Him there is always hope and healing in His wings. Prayers and blessings to you all.

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@kellysmail2016

Thank you as well!!! I completely get the part of not leaving your home. I hated staying home prior. Slept 5-6 hours a night and always on the go. Now, if I go out 3-4 hours I’m in bed for 3-4 days.

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I don't really have the extreme fatigue that you and others describe. I’m thankful for that but I do have problems moving around. I am dizzy and have fallen a couple times. I try to be always mindful as I move around.
For me, my ears no longer work. Everything is muffled and even though I wear hearing aids they don’t help much. I also have tinnitus and hyperacusis. Both are very difficult to bear. In addition my vision has become blurry and changing focus almost impossible. Glasses do not help. I have regular glasses and prism glasses. My vision was fine before Covid. Now I’m hyper light sensitive with blurring.
Also digestion is wrecked. Extreme constipation. Mild nausea 24/7. Have lost about thirty pounds.
I have told my story on different threads. It seems there is no real help. I’m on all kinds of vitamins and supplements that do not help me. I am beyond discouraged. Sick since February 2022.

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I got COVID in October of 2020 just before the vaccine came out. After a couple months, I got so dizzy that I could hardly walk. I have steadily grown worse and now I can't walk without a walker and then only for short distances. I can't exercise well, so I have gained weight and that has made my knees hurt. I have been to all kinds of doctors and haven't gotten much help. But then no one knows how to cure the disease, so I don't blame them. I have tried to get into Mayo, but got rejected 3 times, but I did get into Cleveland Clinic and will go there in late November. There is no way I could work as I can't really concentrate all that well. Does anyone else suffer from dizziness and balance problems?

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