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

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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@lshecky my main symptoms were Brain Fog, PEM, Exercise Intolerance, and a sensation in my head I now class as pain (because it doesn't feel good) that feels like dizzy, but not quite, dropping on a roller coaster, but not quite, and rocking. At no time do I feel like I am going to fall down, but the sensation is with me most of the day. I have been on supplements and through the Mayo Rochester program. As part of the Mayo program, Cymbalta and Naltrexone, now stopped per their plan. Today I feel better, not 100%, but better. That 'better' comes I think from healing, but also from knowing my boundaries. I still can't exercise as much as I once could or PEM kicks in. Per Mayo moderation I limit myself to 10 minutes elliptical aimed at leg strength not cardio. 10 push ups, 10 squats, 10 sit-ups. Mayo teaches moderation "treat yourself like an injured athlete, you can't go right back to what you were doing". Where once I could to 45 minutes cardio/resistance exercise, I can't any longer. My hopes are with time, all this passes.

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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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New study I saw on Goats and Soda about chronic diarrhea in children. Replacing rehydration salts saves lives.
So many LC sufferers have chronic diarrhea. It is actually not so crazy to consider water and electrolytes could make a big difference for some people.
Anytime a therapy claims to heal everything it is suspect, but there is evidence to support a water/salt therapy for rehydration can be life saving.

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@dloos

New study I saw on Goats and Soda about chronic diarrhea in children. Replacing rehydration salts saves lives.
So many LC sufferers have chronic diarrhea. It is actually not so crazy to consider water and electrolytes could make a big difference for some people.
Anytime a therapy claims to heal everything it is suspect, but there is evidence to support a water/salt therapy for rehydration can be life saving.

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Yes, of course we need to stay hydrated and make sure we have a good balance of salts and nutrition. People that are losing liquids, either from illness or intense exercise need to replace them. Pre- LC I did bike races and an important part of that is hydration/electrolytes and getting enough simple and complex carbs to finish. Bike shops have some pretty good electrolytes (mix of sugars and salts) that are less expensive then some of the grocery store and online stuff. Some of the online hydration sells are just overpriced sugar/salt (sucrose/NaCl) and water. I drink water with electrolytes if I'm biking, but not everyday unless my collitis causes fluid loss.

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Yes, I agree.
I think sometimes simple solutions are overlooked.

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