Anyone have the following experiences with long covid?

Posted by buttasu @buttasu, Dec 6, 2023

*Eyes feel like something weighing them down. Sick & tired looking eyes
*Weight gain far surpasses food intake; about 20 lbs gained since 2021
*Extreme difficulty waking up in morning, even with more than 7 hours of sleep
*Increased fatigue

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@buttasu

<p>*my eyes feels like something is weighing them down<br />*weight gain far surpasses food intake; about 20 lbs gained<br />*extremely difficulty waking up in morning<br />*increased fatigue</p>

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@bettyjackson I feel for you. I too am a Long COVID sufferer that has gone through the Mayo program. I am at about 3-1/2 months and feeling better. Sounds like you are practicing moderation which is core to the Mayo approach to get the Central Nervous System back under control. I too am following moderation and one of my plan elements is limiting my exercise. Where I once was at 45 minutes aerobic (cardio and resistance exercises) 6 times a week, I am now limited to 10 minutes elliptical (aimed at leg strength, not cardio), 6 push ups and 6 squats! Quite a throttle back and I have to really hold myself back because I am a Type A personality. I want to fix it, now!

For your fog, are you trying any supplements? One of the better ones recommended is magnesium which I take at night because it also helps you sleep. Warning though, magnesium is challenging to the digestive system. I also take/have taken prescriptions directed by Mayo and other supplements. Best wished in your journey and keep driving to a better place!

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@pat814

Yes, especially when driving and stopped at a traffic light I felt like I needed toothpicks to keep my heavy eyelids open. It was scary. I called it daytime sleepiness. I’f nod off anytime I sat down, even sitting straight up. When I told the nurse practitioner at my local Post Covid 19 Recovery Clinic, she asked if I’d ever had a sleep study, to which I responded, “No.”. I’d been told by my family that I snored quietly. So, I did an overnight sleep study. At 2:00 AM I awoke to use the bathroom. When I came back to the bed the sleep tech casually told me she was going to start me on OXYGEN. I asked her what my O2 had dropped to. She said 85%. I was diagnosed with Severe Sleep Apnea, and prescribed a Nasal Pillow CPAP machine in July. It is now my new best friend. No more heavy eyelids-daytime sleepiness, napping in the daytime.

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I saw a neurologist who recommended a sleep study. I have not followed through as of yet. However, I plan to soon. My husband says I've too been snoring. Thanks for your response

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@terrielynnav

Is the weight fluid retention? Are you carrying it i your belly or all over?

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Belly especially!

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@pat814

Praying for you. How old are you? I didn’t mention I developed overactive bladder during active covid in June 2022. I’d be walking to the bathroom not feeling any urgency. It would be like somebody turned the faucet on, and it wasn’t me. As soon as I wasn’t contagious I saw a female urologist who ran tests and diagnosed me with overactive bladder. I take medication daily which has helped. But, I do know where the bathrooms are in local stores. I also had 6 fully formed bowel movements a day, despite the weight gain😳Everytime I sat on the toilet to pee, I’d also poop. That continued for a year until I started on prednisone. I woke up every morning with extreme body aches and had been taking 1,000 MG Ibuprofen to function. When I was referred to a local rheumatologist, he sent me for extensive blood work. Based on those results he diagnosed me with rheumatoid arthitis. I started on 10 mg prednisone which brought my bowels back to normal, as well as alleviating the body aches without Motrin.

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Thanks for sharing. I'm 49. I have not consulted with a long covid specialist. Maybe I should. Im considering seeing a Bariatician for the weight gain. I have been gluten free for over 7 years, 5 months I stopped eating meat, only consume seafood; and severly decreased sugar intake. No weight loss. Also, I didn't mention, my MGUS progressed to Smoldering Multiple Myeloma over a year ago. I'm feel monstrous. I mostly stay home. It's blessing that I found a job working from home.

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I had similar symptoms and after a blood test it was confirmed that I have Hashimoto’s/Hypothyroidism. I was falling asleep right after I ate, which I never did before. Have your doctor test your TSH levels, T3-free levels, T4-free levels, and your thyroid antibodies. I do take medication daily and for the rest of my life for it, but small price to pay to stay awake! Good luck on your health journey.

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@lkirnbauer

I had similar symptoms and after a blood test it was confirmed that I have Hashimoto’s/Hypothyroidism. I was falling asleep right after I ate, which I never did before. Have your doctor test your TSH levels, T3-free levels, T4-free levels, and your thyroid antibodies. I do take medication daily and for the rest of my life for it, but small price to pay to stay awake! Good luck on your health journey.

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Im 49, and had a total thyroidectomy about 20 years ago due to thyroid cancer. Though I'm on levoxyl, I go from hyper to hypo regularly. I've been hyper for at least a year now. No energy boost or weight loss.

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@buttasu

Im 49, and had a total thyroidectomy about 20 years ago due to thyroid cancer. Though I'm on levoxyl, I go from hyper to hypo regularly. I've been hyper for at least a year now. No energy boost or weight loss.

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I’ve not heard of that happening. I’ll bet it’s kind of difficult to adjust your medications while that’s happening! Maybe talk with your doctor about getting off your medication for a while to see if that makes any difference. Sometimes, it’s just trial and error! I wish you well!

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Yes, to all of it. Took 3 years for me to get to a Long COVID clinic. Unfortunately, I still have weight issues when I am lucky to eat one meal a day sometimes with minimal calorie intake. As part of my Long COVID issue that is attacking my autonomic nervous system, I have gastroparesis. It is incurable. Ugh. My food does not digest nor exit my body as it should. I am taking low dose naltrexone to help with the extreme fatigue, Unfortunately, I have some virus/upper respiratory thing at the moment and my eyes are so heavy and I am so exhausted even with the Low Dose Naltrexone. I can't exercise unless I want to be bed ridden for days. I have to be careful of how much energy I expand daily. My Long COVID clinic and Rheumatologist are running bloodwork regularly to make sure my vitamin levels are where they should be. I would see and GI and try to get in with a Long COVID Clinic. Not everyone with Long COVID will have the same issues. Take care of yourself, be kind to yourself, don't try to push through this as I did, it does not work. You are not alone. I wish you good luck with finding medical help and learning to live with your new normal.

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@buttasu

Thanks for sharing. I'm 49. I have not consulted with a long covid specialist. Maybe I should. Im considering seeing a Bariatician for the weight gain. I have been gluten free for over 7 years, 5 months I stopped eating meat, only consume seafood; and severly decreased sugar intake. No weight loss. Also, I didn't mention, my MGUS progressed to Smoldering Multiple Myeloma over a year ago. I'm feel monstrous. I mostly stay home. It's blessing that I found a job working from home.

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I'm 69, celiac for 14 years, I eat dairy but otherwise FODMAP diet, low sugar/salt. I eat a lot of tumeric/black pepper in case that helps suppress MGUS. I caught covid from a cyclist on a March biking tour and got glutened at the same day "GF" dinner, so a double cytokine storm. It is now 8 months and the LC is mostly gone. I've gradually ramped up my aerobic exercise (weights and other resistance training doesn't seem to be hit). And, my MGUS (7 years) is not smoldering yet, but the Kappa/Lamda curve moves skyward. MGUS is scary, particularly with its progression to smoldering.

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@smdawson540

Yes, to all of it. Took 3 years for me to get to a Long COVID clinic. Unfortunately, I still have weight issues when I am lucky to eat one meal a day sometimes with minimal calorie intake. As part of my Long COVID issue that is attacking my autonomic nervous system, I have gastroparesis. It is incurable. Ugh. My food does not digest nor exit my body as it should. I am taking low dose naltrexone to help with the extreme fatigue, Unfortunately, I have some virus/upper respiratory thing at the moment and my eyes are so heavy and I am so exhausted even with the Low Dose Naltrexone. I can't exercise unless I want to be bed ridden for days. I have to be careful of how much energy I expand daily. My Long COVID clinic and Rheumatologist are running bloodwork regularly to make sure my vitamin levels are where they should be. I would see and GI and try to get in with a Long COVID Clinic. Not everyone with Long COVID will have the same issues. Take care of yourself, be kind to yourself, don't try to push through this as I did, it does not work. You are not alone. I wish you good luck with finding medical help and learning to live with your new normal.

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@smdawson540 I wish you all the best. I experience exercise limitations and am currently moderating at 10 minutes elliptical (for leg strength not cardio fitness), 6 squats, and 6 pushups. Where once I was 45 minutes aerobic (cardio and resistance). Pre Mayo I was told by local neurologist "keep exercising, it'll make you feel better", wrong!!! One of my primary symptoms was Exercise Intolerance. The 45 minutes would destroy me and I would need to lay down for hours to recover. Same with chores around the house with Post Exertion Malaise (PEM). I don't experience that anymore with my reduced level (and all the other elements of my Mayo plan). One of the best analogies I was introduced to my Mayo was that you must treat yourself like an injured athlete. You can't just back out there at the same level, you need to work up to it. Hopefully you can start super simple and ultimately work your way back.

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