Long Covid Symptoms for 10months - Feels hopeless

Posted by lshecky @lshecky, Feb 25 6:48am

I’m a 53-year-old woman. I naturally carry a lot of anxiety, it runs in my family. What fulfills me most in life is helping others. I’ve been a executive assistant for 30 years. Until April 2023 when I came down with shingles, and during that time I was unaware that I picked up Covid. in May 2023, I was just getting worse and didn’t know why. I went through family doctor, functional medicine, doctor, etc. etc.. By June I felt so chronically fatigued that I couldn’t focus, I had short term, memory problems, insomnia, chronic headaches, trigeminal facial pain, chronic ache on left side teeth, jaw, gums, teeth, what seem like sinus pain but isn’t. I know I have severe adrenal and sufficiently. I’ve had MRIs on my adrenal glands and pituitary gland and they come back fine yet my cortisol is way below normal. I’m on hydrocortisone steroids to help with the low cortisol. I give myself migraine shots once a month, but it only helps some.

I left my dream job in August because it couldn’t even function anymore. I got on short term disability and I’m currently working with LTD to hopefully be approved, and I also hired a attorney to help with SSDI as a possibility.

How can a chronically ill patient even keep up with all the doctors appointment and disability and everything else on top of trying to be a good wife, sister, stepmom, friend and mom. I just want five minutes of a day without any pain. It’s been a exhausting journey.

I will also add the pack in 1998. I picked up Elsa of colitis. After 10 years, very personal and awful symptoms, I finally got a total colectomy in 2006, which save my life.

In 2016 I had a lot of arthritis in my neck and have had three surgeries to replace just in my neck over the last four years.

And now, having Covid with chronic symptoms every day for the past 10 months, it’s just all exhausting.

My life has been full of sickness, but I refuse to have a bad attitude about it. People who know me will tell you I’m always positive and smiling and giving them cheerful advice, because I refuse to see life through the eyes of someone who’s been ill her whole life. I call it rainbow vision. Your attitude is one thing that cannot be taken from you!

That being said, Covid feels very exhausting, and no one really seems to understand the less you’ve been through it.

I’m seeing a endocrinologist on a regular basis for my low cortisol count I see my neurologist regularly to help with migraines, and ENT doctor that says no problems yet the left side of my nose I cheek and throat are on fire chronically

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@lshecky I too am a LC sufferer since November '21 after my first (and last) booster. My symptoms aren't quite so severe as what you describe and I am working in a role that I can manage my symptoms with, but I have often wondered how I would have managed in many of my past roles that were more 'activity level' demanding, I don't think that I could have. I definitely empathize with your situation. Having worked for a number of different companies I can imagine some companies being supportive and some not.

I worked through all my local Doctors here in Charleston, SC. One of them coined the phrase "we are taking the journey of what it is not". They were trying to help, but just didn't know enough about LC. I ended up at Mayo Rochester in August '23 and today I feel better, not back to 100% but better. I believe my 'better' is a combination of actual recovery and my ability to manage my symptoms.

I wish you the best, keep pushing, and if you can, find your way to Mayo or another equivalent organization with an LC program.

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Hi, Look up up Dr. Boon Lim on YouTube. He has some very good information on how to get well for Covid sufferers. I too have had Covid-19 and still suffer fatigue but I am getting better. I have been following the doctor's advice of taking more water and salt. There is more information on watercures.org. There I found out how and when to consume water, and how much to drink based on body weight. There I found you need to consume natural salt as well. There are some 660,000 of us with long covid. You are not alone. I know exactly how you feel. It seems the only ones that understand us are others that have had COVID-19. I always wear a mask now when leaving my home and around other people. I never want to get that sick again. I could not cook, or bath myself, and had a thirst for water that was insane. I could not get enough to drink. Constant thirst. That lasted about 2 1/2 weeks. It was then that I discovered the watercures.org page thanks to another Covid sufferer who had posted about it. I have been following their recommendations, and I seem to getting better every day a little stronger. I hope this information helps you.

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@danakelly1956

Hi, Look up up Dr. Boon Lim on YouTube. He has some very good information on how to get well for Covid sufferers. I too have had Covid-19 and still suffer fatigue but I am getting better. I have been following the doctor's advice of taking more water and salt. There is more information on watercures.org. There I found out how and when to consume water, and how much to drink based on body weight. There I found you need to consume natural salt as well. There are some 660,000 of us with long covid. You are not alone. I know exactly how you feel. It seems the only ones that understand us are others that have had COVID-19. I always wear a mask now when leaving my home and around other people. I never want to get that sick again. I could not cook, or bath myself, and had a thirst for water that was insane. I could not get enough to drink. Constant thirst. That lasted about 2 1/2 weeks. It was then that I discovered the watercures.org page thanks to another Covid sufferer who had posted about it. I have been following their recommendations, and I seem to getting better every day a little stronger. I hope this information helps you.

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So kind of you to reply. I suppose every disease a person feels very alone with you know. So these replies make you feel like others are fighting the fight with you.

I will definitely check out the water site!

I hope you get better soon! I hope we all do!

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@arichards3

@lshecky I too am a LC sufferer since November '21 after my first (and last) booster. My symptoms aren't quite so severe as what you describe and I am working in a role that I can manage my symptoms with, but I have often wondered how I would have managed in many of my past roles that were more 'activity level' demanding, I don't think that I could have. I definitely empathize with your situation. Having worked for a number of different companies I can imagine some companies being supportive and some not.

I worked through all my local Doctors here in Charleston, SC. One of them coined the phrase "we are taking the journey of what it is not". They were trying to help, but just didn't know enough about LC. I ended up at Mayo Rochester in August '23 and today I feel better, not back to 100% but better. I believe my 'better' is a combination of actual recovery and my ability to manage my symptoms.

I wish you the best, keep pushing, and if you can, find your way to Mayo or another equivalent organization with an LC program.

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Thank you for taking the time to respond! It’s very kind of you. May I ask what your main symptoms were and what you did to help yourself?

Also, what mayo clinic did for you? I am debating whether or not I should go that route.

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@danakelly1956

Hi, Look up up Dr. Boon Lim on YouTube. He has some very good information on how to get well for Covid sufferers. I too have had Covid-19 and still suffer fatigue but I am getting better. I have been following the doctor's advice of taking more water and salt. There is more information on watercures.org. There I found out how and when to consume water, and how much to drink based on body weight. There I found you need to consume natural salt as well. There are some 660,000 of us with long covid. You are not alone. I know exactly how you feel. It seems the only ones that understand us are others that have had COVID-19. I always wear a mask now when leaving my home and around other people. I never want to get that sick again. I could not cook, or bath myself, and had a thirst for water that was insane. I could not get enough to drink. Constant thirst. That lasted about 2 1/2 weeks. It was then that I discovered the watercures.org page thanks to another Covid sufferer who had posted about it. I have been following their recommendations, and I seem to getting better every day a little stronger. I hope this information helps you.

Jump to this post

To | @danakelly1956
Thank you for your post. Like all of us, I sm looking for ideas on how to improve. My daughter has had COVID 4-5 times and this last time (over a year ago) put her into long COVID and she has terrible exhaustion, cognitive issues, and breathing issues.
She drinks Liquid IV which is supposed to multiply one’s water intake (I can’t explain how but supposedly it triples it).
I don’t know if anyone t see one has tried that but I thought I’d mention it.
She is on Medicaid and a lot of doctors do not accept that so it’s challenging getting in to see doctors. Right now she just sees her GP but I’m trying to look for a place that will take Medicaid. We are in Northern VA.
I hope you continue to improve. Thank you for sharing.

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@bba3

To | @danakelly1956
Thank you for your post. Like all of us, I sm looking for ideas on how to improve. My daughter has had COVID 4-5 times and this last time (over a year ago) put her into long COVID and she has terrible exhaustion, cognitive issues, and breathing issues.
She drinks Liquid IV which is supposed to multiply one’s water intake (I can’t explain how but supposedly it triples it).
I don’t know if anyone t see one has tried that but I thought I’d mention it.
She is on Medicaid and a lot of doctors do not accept that so it’s challenging getting in to see doctors. Right now she just sees her GP but I’m trying to look for a place that will take Medicaid. We are in Northern VA.
I hope you continue to improve. Thank you for sharing.

Jump to this post

Sorry to hear how your daughter is suffering. I would watch Dr. Boon Lim on YouTube. There I have learned about water and salt intake, deep breathing exercises, and cold showers, which I am going to try today. He goes through the steps of how to get well. It is a process, and always best not to overdue anything that causes fatigue. I can tell you, that I wrote a post on Feb. 18, where I was extremely fatigued, had such an extreme thirst for water that I had never experienced, and could not cook, I ate frozen dinners, could not bath myself because I was too week, had a horrible cough and thick phylum. I had headaches constantly. I have been following Dr. Boon Lin's advice and I am recovering. I can cook again, and bathe, my cough is less frequent. I am improving daily. I am diligent about the watercures.org method of consuming water at certain times and taking natural salt. I hope your daughter gets well, as I felt like there was nothing I could do until I found these 2 methods. They are natural healing methods and make sense. May good come to your daughter and all your family.

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I seen and heard an article on some research group that found a possible cause for long covid on TND tv. It did not repeat. Hopefully there will be more.

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Liquid IV contains sugar and salts; it "works" by giving quick energy (sugars) and increasing water retention (salts); while these don't hurt a person, they give the illusion of helping. I looked at the watercures.org site, and it is correct that getting enough water and having a good balance of fluids and salts is important to health. Athletes and others that sweat in particular need to replenish water, salts, and sugars. Otherwise, the site is bogus. Curing MS and cancer through their water plan? There is minimal difference between Morton's salt (mostly NaCl) and the other sea-derived salts (although some contain heavy metals). I drink a lot of water and am on a low sugar and salt diet. If one is concerned about the quality of their tap water then it is good to send a sample for minerals/bacteria analysis, and to filter it. I spent 40 years as a research geochemist/geologist, including on salts. My brother believed that his pancreatic cancer could be cured by drinking flourine-free water and eating sesame seeds; there is a lot of misinformation online. It is important to eat and drink a healthy diet, get enough exercise, avoid stress, and get enough sleep and social contacts. I got covid on a 7-day 350 mi bike ride last March; it took 8 months for the LC to go away.

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The problem is that our regular medical system has no answers for us. After suffering for months and years, we are all susceptible to cures, that may not be cures.
Some people are helped by non-traditional medicine.

After two years I have been down MANY roads. I would never have been so far reaching if my regular GP would have helped me. I am open to just about ANYTHING because I want so badly to be well again.

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@kayabbott

Liquid IV contains sugar and salts; it "works" by giving quick energy (sugars) and increasing water retention (salts); while these don't hurt a person, they give the illusion of helping. I looked at the watercures.org site, and it is correct that getting enough water and having a good balance of fluids and salts is important to health. Athletes and others that sweat in particular need to replenish water, salts, and sugars. Otherwise, the site is bogus. Curing MS and cancer through their water plan? There is minimal difference between Morton's salt (mostly NaCl) and the other sea-derived salts (although some contain heavy metals). I drink a lot of water and am on a low sugar and salt diet. If one is concerned about the quality of their tap water then it is good to send a sample for minerals/bacteria analysis, and to filter it. I spent 40 years as a research geochemist/geologist, including on salts. My brother believed that his pancreatic cancer could be cured by drinking flourine-free water and eating sesame seeds; there is a lot of misinformation online. It is important to eat and drink a healthy diet, get enough exercise, avoid stress, and get enough sleep and social contacts. I got covid on a 7-day 350 mi bike ride last March; it took 8 months for the LC to go away.

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I had 18” of my colon resected due to severe diverticulitis back in April of 2022. I began drinking LMNT Hydration Electrolytes recently and these packets have really helped with dehydration. I don’t have that Vertigo feeling any longer. I also came down with Covid in December of 2022 and to this date, have not gotten my taste or smell back. It’s been quite the ride and I’m going in for my 3rd Stellate Ganglion Block in March to hopefully regain it. So far, the first two injections brought back only a slight improvement of salty, sweet, sour and bitter back to my tongue. I still don’t taste any flavors. Anyone else experiencing this?

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