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Hello all, I'm new here and new to Mayo in general. It's nice to have finally found a place where others will understand my plight.
I came down with COVID in October of last year. I believe my symptoms started on the 10th. By the end of the day on the 11th, I felt like hell (and I was traveling for work, to boot.) My sense of taste and smell where nuked the following Monday. The cough was so bad that I'd loose vision for about a minute, and I'd have strange pulsing in my head, and buzzing in my ear (mostly the left side, but a bad coughing fit would allow it to creep over to the right.) I had zero energy, slept all day, and I was in a fair amount of pain. The dizziness was insane, and I couldn't drive most of the time. I eventually got my hands on a pulse-ox meter. My O2 was frequently down around 92, or so, and my resting heartrate was up in the 80's and sometimes 90's. My baseline when I'm healthy is 98/99 O@ and high 60's to low 70's for heartrate.
I made several trips to the walk-in clinic, a couple trips to my doctor, and one to the ER in the course of 6 weeks. I had never tested positive, so they didn't treat me like I had COVID. When Thanksgiving hit, my wife came down with COVID. I was starting to feel slightly better, and I decided not to mask up because I already had it. Well, I got it again. Exact same symptoms. The only positive parts of this was that the doctors took me seriously this time, and I started to feel slightly better after 4 weeks instead of 6. I haven't been keeping up with the pulse-ox.
For the most part, I haven't recovered. My Long COVID symptoms are chronic body and joint pain, chronic dizziness, cognitive impairment, chronic fatigue and I still can't smell very well. I'm struggling to get the most basic things done in life. This precipitated a divorce, so I'm living on my own, and keeping up around the house is impossible. I struggle playing with my 4 year old son (I can only play Mario Kart for about 15-20 minutes because of the joint pain), and I'm putting in for a leave of absence for the rest of the semester, since teaching has been extremely difficult most of the time. The flareups are brutal. There are times where my entire body throbs, including the palms of my hands and the bottoms of my feet. Most nights I try to aim for 10 hours of sleep, which hasn't been enough. Reading becomes difficult or impossible and the dizziness makes it so I can't drive.
The only people who really understand me are two friends who are still dealing with Long COVID themselves. My family are sympathetic (except for one obvious member, obviously.) Most of my friends and acquaintances are trying to be sympathetic. However, they spend a lot of time trying to diagnose me. Some have suggested exercise, and scoff when I tell them that's not possible. Others try prescribing me supplements based off of what they saw on the internet. None have really helped. Some have exacerbated things.
At any rate, I have a scheduled phone call with Mayo this afternoon. Here's hoping!
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Hello @singularity6, welcome to connect where we share our experiences with others. I’m sorry that you are having a difficult time with the long covid, it’s really tough to go through this, some people have the worst symptoms that are very sad. I had covid two years ago and I still have heart issues, apparently it’s not so uncommon but sometimes finding help for it can be a real challenge. The best part of being here is that people who have found help will share their experiences or provide advice or links to help others. I hope you find the help you deserve and good luck to you.
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5 ReactionsHi @frouke! Thanks for the reply. I am fortunate to not have any heart issues (that I know of.) I feel for you, and I wish you a full recovery.
My PCP referred me to a pulmonologist, rheumatologist, and a psychiatrist a few weeks ago. Unfortunately, only the rheumatologist's office has called me so far. My appointment with them is January 10. It's also a 2 hour drive (which I'm not comfortable with doing, even on my good days.)
Be well, and stay safe!
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2 ReactionsDear singularity6, our hearts go out to you. All of us have slightly different symptoms, but like you I had the severe fatigue (that gets worse with what we usually call exercise), shortness of breath or breathlessness, and that awful brain fog which for me also makes reading and driving so difficult. And that frustration with expensive MD appointments and tests which generally show nothing. For me the road to find supplements which helped was one of trial and error, but I did eventually find a group of supplements which helped me, starting with simple anti-inflammatories. A round of physical therapy helped me get over the initial hump, focusing on exercises for balance, dizziness, breathing, and VERY mild exercise to improve stamina. Fortunately I was at an age where I could get social security and Medicare, so I can’t even imagine how difficult it would be to someone who needs to earn a living wage to support a family. You can feel so useless ! And humiliated. I’m so glad you’ve found this forum so at least you have people who understand you. Prayers for you.
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5 ReactionsI was in PT for a while. They said that I was beyond their capability and suggested that my doctor send me to a neurologist. 🤷♂️
I live in the Upper Peninsula of Michigan. I like my PCP. But outside of general health care, things can be quite tough.
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2 ReactionsDear singularity:
I'm so sorry to hear of the difficulties you are having with long-COVID. You do not mention (or I didn't see it) finding a medical practitioner who has a strong interest in long-COVID. You might mention in a future posting where you are located and ask for recommendations. Unfortunately, there is no known treatment for long-COVID, but you may also get recommendations on life-style changes that help you life with it. My adult daughter had CFS. It took a long time for all of us to learn how best to help her. My heart goes out to you. BTW, we used an attorney to finely get her approved for SSI. Keep posting because not the same individuals read each post - someone just may have some ideas that are helpful to you.
Here is the US website for research on Long-COVID. This is where new research projects are posted and results announced. You might want to take a look. I realize this kind of thing can be difficult with brain fog predominating. Perhaps a friend or family member can go through this website and find items of interest to you.
https://www.rti.org/impact/accelerating-research-understand-long-term-effects-covid-19
Sorry this isn't a link. You'll need to copy and paste it in to a browser.
Best to you as you cope with this very difficult condition.
Hello Singularity,
First you have to address your low oxygen level. 92 is too low.
From Web MD: “Low oxygen level, also called hypoxemia, is considered a reading between 90% and 92%. A reading this low means you might need supplemental oxygen or that there may be challenges that affect how your lungs function.”
https://www.webmd.com/fitness-exercise/how-to-increase-blood-oxygen-level
I understand your suffering. I was there with extreme fatigue, muscle aches, breathing problems and brain fog for 1.5 years. I prayed for guidance and now I am doing well and I wish to share what I have learned to hopefully help others.
Some over simplified basics: Our muscles are made up of tissues that are made up of cells. The cells need constant recharging to create energy, similar to rechargeable batteries. A constant resupply of oxygen to our cells is needed in order to create the energy.
Here are excerpts from an article by Medical News Today:
“The study shows that when the mechanism that releases nitric oxide from the amino acid binding site in the hemoglobin is working, the blood vessels dilate and allow oxygen-rich red blood cells to flow into the tissue.”
“Essentially, blood flow cannot autoregulate (increase) without nitric oxide.”
https://www.medicalnewstoday.com/articles/292292#Implications-for-blood-transfusions-and-the-nations-blood-supply
The key factor to get oxygen into our cells and tissues is the ability of our bodies to produce nitric oxide. The body naturally produces nitric oxide as the end product of a conversion process of dietary nitrates and vitamin C. One of nitric oxide’s functions is to relax your blood vessels, which improves blood flow and oxygen supply to our tissues.
Obtaining sufficient nitric oxide (NO) takes a constant focus of how we can increase NO by consuming vegetables / supplements with nitrates and avoiding what decreases NO.
We need to consume vegetables with nitrates and have vitamin C from citrus or supplements. Some of those vegetables are beets, kale, spinach, bok choy, celery, cocoa, honey, broccoli, cauliflower, and carrots. Add citrus, like orange slices, to get your C naturally.
The supplements are L-Arginine and L-Citrulline that create NO. They can be taken together, but limit to 9 grams total per day. I take between 3 and 8 grams per day depending on my level of activity / exertion. Remember to take them with vitamin C.
Good luck! Side note: We resided in the Upper Peninsula for a decade. A beautiful place.
Hi @singularity6. I am going on my third year of post/long haul covid and am so thankful searcher1 here for you with that detailed overview. If I may also suggest keeping a food diary or just focus on how your body feels after certain foods as many of us have food intolerances/reactions brought on by these covid body changes. Mine was a histamine intolerance that adjusting my daily foods helped nonstop ever changing rashes, itching without rash, swelling …. I hope this also helps and wish you the best and quickest recovery possible 🌈
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5 ReactionsThanks for this! Three years is quite a long time. I hope you find some relief soon!
I haven't had any issues with food. Just coffee. Sometime it doesn't taste good. When that happens, I have to dump it, otherwise I get a flare-up. Strangely, I haven't had a caffeine headache since I got sick.
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3 ReactionsGood luck to you. My symptoms are different from yours, and I have been in this for almost three years. Hearing loss, blurred vision, digestive issues and dizziness are my remaining symptoms. I have seen lots of doctors and specialists and still have no effective treatment,
This is a good spot for support, and it’s always heartening to hear that someone got better.
Good luck to all.
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