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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@c1john

Long Covid since September/October 2023. A year now. Tired and drained from Chronic Fatigue syndrome. Cannot work. They would fire me on day one with this mess.

I have lost 45 lbs from lack of appetite and the funny texture syndrome of food-labeld anorexic. Dizzy and tired. Have thrown up a gazillion times this year. I have had an MRI, Cat Scan, Heart Scan, Xrays of lungs, Breathing tests, EGD, have given so much blood for tests.

Therapies: first it was Paxlovid, then a barrage of prescriptions too many to name. Vitamins, supplements, self tests of trying Coriciden BP for a week to get rid of excess mucous in nose and throat. Seemed to help.
Mindful Meditation does help a bit but doesn't alleviate symptoms. Right now I am doing detox baths and showers which help my depression and body aches and the general feeling of ick. I am trying Weed which helps with nausea and appetite.
I have been in 3 test groups.
I am my own test subject since the medical team has failed us.

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I just noticed the food tastes bad. That seems like a more recent symptom I had but it comes and goes. Vomited a bit but that seems a lot. They say you’re anorexic from this? I don’t know if that could be from a gastro issue. I would try a Gastroenterologist if you haven’t been to one yet. I done see any others really with that. Speak up y’all if you do this as well. There is so much crap from Covid, I’m not surprised.

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@kellysmail2016

I understand. I am
Seeing different, but not by much, symptoms as to when you get it. You were a late Coviteer. (My term again, like the Micky Mouse Club Mouseketeer’s. ). lol. Come join the club. Haha. Sarcasm at it finest.

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I have had LC since March 2021. I can barely work due to the crashes, fatigue, body aches and brain fog. Since I am self employed, at least I can't get fired but also there is no paid time off from work.
I love the term Coviteer! Belonging to a club no one should have to join but at least we have a cool nickname now 🙂

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Hi!
I'm new here just found this as I research places to get treated. Im pretty sure what I'm experiencing is LC. I had COVID in 2020 and again in 2022 both times really bad. Since the first time in 2020 I've had heart palpatations, rapid heart rate (just walking up my stairs in my house it goes up to 134), increased BP, shortness of breath, body aches and lose my voice, extreme fatigue. I'll get so short of breath just doing normal stuff and my heart rate increases and BP goes up I get exhausted and have to sleep. I'm a therapist and talk all day, it's affecting my ability to do my job anymore, Im exhausted and have no capacity to be attentive. Im worried I'll have to stop but I have to work so I don't know what to do anymore. Ive gone to the ER multiple times and been in the hospital all to be told they have no clue what is wrong with me. Every year the symptoms get worse, I've been sick now for 10 weeks. Im exhausted all the time. I used to run marathons and work out daily now I can hardly walk around my house. We may have to eventually sell the house b/c I cant even get upstairs. 🙁 I'm hoping to get into Mayo clinic's LC but would love to hear other's experiences and recomendations for LC clinics

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@kelly2ws

I have had LC since March 2021. I can barely work due to the crashes, fatigue, body aches and brain fog. Since I am self employed, at least I can't get fired but also there is no paid time off from work.
I love the term Coviteer! Belonging to a club no one should have to join but at least we have a cool nickname now 🙂

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Yeah, maybe I can trademark that one and sell “ memorabilia “. Like we can’t forget feeling so badly. Wish the brain fog erased that part!! So, 2021 variant I think was the worst. At least that time was for me.

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@trishblmft

Hi!
I'm new here just found this as I research places to get treated. Im pretty sure what I'm experiencing is LC. I had COVID in 2020 and again in 2022 both times really bad. Since the first time in 2020 I've had heart palpatations, rapid heart rate (just walking up my stairs in my house it goes up to 134), increased BP, shortness of breath, body aches and lose my voice, extreme fatigue. I'll get so short of breath just doing normal stuff and my heart rate increases and BP goes up I get exhausted and have to sleep. I'm a therapist and talk all day, it's affecting my ability to do my job anymore, Im exhausted and have no capacity to be attentive. Im worried I'll have to stop but I have to work so I don't know what to do anymore. Ive gone to the ER multiple times and been in the hospital all to be told they have no clue what is wrong with me. Every year the symptoms get worse, I've been sick now for 10 weeks. Im exhausted all the time. I used to run marathons and work out daily now I can hardly walk around my house. We may have to eventually sell the house b/c I cant even get upstairs. 🙁 I'm hoping to get into Mayo clinic's LC but would love to hear other's experiences and recomendations for LC clinics

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Hi Trish?,
The way you just described how this all came down and how you are feeling, sounds to me exactly like Long Covid. Of course, I am not saying to not go to a Dr and get diagnosed BUT as a lot of us here experience, it’s hard to find one educated enough in LC to say that. At first they were all too scared to use the words or believe that it’s real. My own son was even one to think of it just like a flu that goes away. What area are you in? There are some other facilities and trials going on right now. I too have been to ER I Think 3 times and say they can’t find anything. Now I just had oxygen delivered and can’t work (I loved to work!) and my pain and fatigue make me sometimes not to want to even be here. Yes, it has been worse each month. I had Covid 5 or 6 times. 2020,21, 22, think 23 but not tested and twice in 24. Each making original symptoms worse and adding new ones. Here is some literature you might wish to read. I’m Kelly, BTW. Enjoy chatting. Can’t get out like I used to and really, my fiancé is great at helping me but he really doesn’t understand it. I am not as fun anymore. He makes statement like “when you are better, we can go here”. I’m afraid that may never happen. The “3 MONTHS” of long haulers has now turned into 4 plus years of LC. I don’t see an end in site for this, especially since I keep getting worse!!!

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@kellysmail2016

Hi Trish?,
The way you just described how this all came down and how you are feeling, sounds to me exactly like Long Covid. Of course, I am not saying to not go to a Dr and get diagnosed BUT as a lot of us here experience, it’s hard to find one educated enough in LC to say that. At first they were all too scared to use the words or believe that it’s real. My own son was even one to think of it just like a flu that goes away. What area are you in? There are some other facilities and trials going on right now. I too have been to ER I Think 3 times and say they can’t find anything. Now I just had oxygen delivered and can’t work (I loved to work!) and my pain and fatigue make me sometimes not to want to even be here. Yes, it has been worse each month. I had Covid 5 or 6 times. 2020,21, 22, think 23 but not tested and twice in 24. Each making original symptoms worse and adding new ones. Here is some literature you might wish to read. I’m Kelly, BTW. Enjoy chatting. Can’t get out like I used to and really, my fiancé is great at helping me but he really doesn’t understand it. I am not as fun anymore. He makes statement like “when you are better, we can go here”. I’m afraid that may never happen. The “3 MONTHS” of long haulers has now turned into 4 plus years of LC. I don’t see an end in site for this, especially since I keep getting worse!!!

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Oops, forgot to attach. lol. There is the Brain Fog. 😶‍🌫️

Shared files

SSD GUIDE (SSD-GUIDE-1.pdf)

Why LC can cause exhaustion, or post-exertional malaise, after exercise - Shots - Health News - NPR (Why-LC-can-cause-exhaustion-or-post-exertional-malaise-after-exercise-Shots-Health-News-NPR-2.pdf)

Long_COVID_Definition_infographic (Long_COVID_Definition_infographic.pdf)

Long COVID leads to inflammatory markers in the blood - NIHR Imperial Biomedical Research Centre (Long-COVID-leads-to-inflammatory-markers-in-the-blood-–-NIHR-Imperial-Biomedical-Research-Centre.pdf)

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@kellysmail2016

Oops, forgot to attach. lol. There is the Brain Fog. 😶‍🌫️

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Hi Kelly! Thank you for these articles. Exactly how I feel after exercise. Its awful b/c I love exercise it's my self care and I don't know what to do with myself.

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@kellysmail2016

Hi Trish?,
The way you just described how this all came down and how you are feeling, sounds to me exactly like Long Covid. Of course, I am not saying to not go to a Dr and get diagnosed BUT as a lot of us here experience, it’s hard to find one educated enough in LC to say that. At first they were all too scared to use the words or believe that it’s real. My own son was even one to think of it just like a flu that goes away. What area are you in? There are some other facilities and trials going on right now. I too have been to ER I Think 3 times and say they can’t find anything. Now I just had oxygen delivered and can’t work (I loved to work!) and my pain and fatigue make me sometimes not to want to even be here. Yes, it has been worse each month. I had Covid 5 or 6 times. 2020,21, 22, think 23 but not tested and twice in 24. Each making original symptoms worse and adding new ones. Here is some literature you might wish to read. I’m Kelly, BTW. Enjoy chatting. Can’t get out like I used to and really, my fiancé is great at helping me but he really doesn’t understand it. I am not as fun anymore. He makes statement like “when you are better, we can go here”. I’m afraid that may never happen. The “3 MONTHS” of long haulers has now turned into 4 plus years of LC. I don’t see an end in site for this, especially since I keep getting worse!!!

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HI Kelly!
Im in North Georgia. I put a request in today for the Mayo clinic. I don't have alot of faith in the doctors here in GA, they are not the best nor do they want to address anything that has to do with COVID. My son is a hyperbaric tech and I've done some time in the chamber that helped but crap its so expensive. There is good research on it helping though. I'm hoping to get back in soon. I worry about being able to keep doing my job too I dont know what else I'll do with myself if I cant be a therapist anymore but it is so exhausting everyday.
I have found that when I'm near the ocean I feel better, we went to Jeckyl Island last month and within 24 hours I could breathe and I actually rode a bike, got back to N.GA and I was back to feeling like crap the next day and have not gotten better since just worse so I often wonder if there is also something environmental triggering this. Back in 2022 we thought it was
Breast Implant Illness and I had my implants removed, that did not help for very long. I'm convinced this is long COVID and it'll only progress as time goes on 🙁

REPLY
@trishblmft

HI Kelly!
Im in North Georgia. I put a request in today for the Mayo clinic. I don't have alot of faith in the doctors here in GA, they are not the best nor do they want to address anything that has to do with COVID. My son is a hyperbaric tech and I've done some time in the chamber that helped but crap its so expensive. There is good research on it helping though. I'm hoping to get back in soon. I worry about being able to keep doing my job too I dont know what else I'll do with myself if I cant be a therapist anymore but it is so exhausting everyday.
I have found that when I'm near the ocean I feel better, we went to Jeckyl Island last month and within 24 hours I could breathe and I actually rode a bike, got back to N.GA and I was back to feeling like crap the next day and have not gotten better since just worse so I often wonder if there is also something environmental triggering this. Back in 2022 we thought it was
Breast Implant Illness and I had my implants removed, that did not help for very long. I'm convinced this is long COVID and it'll only progress as time goes on 🙁

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Trish, it really does sound like it. I’m a gambler, lol, and I’d bet quite a bit on that. There is a book that recently came out from scientific data from all places. I will look for it and post it for you. Has some interesting chapters.

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@kellysmail2016

I just noticed the food tastes bad. That seems like a more recent symptom I had but it comes and goes. Vomited a bit but that seems a lot. They say you’re anorexic from this? I don’t know if that could be from a gastro issue. I would try a Gastroenterologist if you haven’t been to one yet. I done see any others really with that. Speak up y’all if you do this as well. There is so much crap from Covid, I’m not surprised.

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Yes, that is what my GP said. I have been many times to the Gastroenterologist. I even had a EGD to clear up the "suggestion " of stomach cancer and they even fixed a couple of polyps in my esophagus. The Anorexic that I have been labeled with is because tons of food and drinks taste funny to me now. I guess that is a "food disorder" . So yes, I have been to two different Gastroenterologist and had the EGD in September.

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