Not Alone

Thank you for your kind words, and I’m so sorry you’re going through this as well for so long. It’s so frustrating going to doctors with no resolve. My Cardiologist tells me flat out they don’t know why I have the symptoms I’m experiencing. A few guesses but nothing concrete. It really is sooo hard getting through the bad days which unfortunately for me out weigh the good. I can’t go out for my walks or even enjoy a day out with my family anymore because of the lightheadedness, feeling unbalanced and the heart palpitations. I always feel like I’m either going to fall or pass out.
I have some really dark days and thoughts at times, it’s the hardest struggle of my life.
I hope and wish you a complete healing. Sending light and positive thoughts for you.

I hope you all get relief. I can barely imagine being exhausted all the time. In some ways I’m lucky. I don’t have fatigue. I actually feel really well most days. It’s my out of blue symptoms that intrude into my life. If they would stop, I’d feel really good. I’m really considering going on an antidepressant soon. My life has been so disrupted. That brings another potential issue, but……idk. I just want my life back. I recall just having to worry about keeping my blood sugar in good control. That in itself is a full-time job. Now….omg…..I yearn for those days.

I know exactly how you feel! 😥

I am sorry you are suffering from all of those symptoms. I feel like a hypochondriac myself because none of my symptoms seemed to be able to be explained. The only thing I do know is that the loss of clumps of my hair, diarrhea and other symptoms are not in my head. They may not be able to explain them, but they are easily seen so I know they’re not in my head. I’m just getting no reason as to why the symptoms are there. It’s just funny they didn’t exist before Covid, however, I’m being told none of my symptoms are related. I have to ask then why was I a healthy individual without any of these symptoms until I had Covid? Anyway, you’re much worse off than I am. I only have about ten weird symptoms. I do hope you get an answer that helps you, suicide would be a really unfortunate outcome to say the least, but I get your frustration and wanting to give up. Just keep trying to be your own advocate!

I have hair loss too, along with smell/taste disorder. I’m praying that with time, they improve. Still seeing doctors to treat symptoms though. Trying everything and hope something helps.

There are so many of us still suffering, while the world has moved on. Original variant from March of '20. Lung and heart at 50% function. Capacity, but not functioning. I still have to work FT and it is very difficult. On nicotine patch and peptides that are helping some, but peptides are prohibitively expensive and of course not covered by insurance. Blood inflammation markers remain high, so have to go to oncologist hematologist. Intermittent fasting 3 x week to help reduce inflammation. I'll never be the me I was pre-covid and it is hard to grieve that loss. My heart goes out to all of us.

This is my first time posting. I am so glad I found this group. I had COVID in July 2022 and then again in December, 2023. I have many of the same symptoms as you guys do. I'm lightheaded at times. I have no energy, my anxiety is high, my muscles ache. I cry for no reason and I'm just tired of feeling this way. I learned, years ago, to make a list of five things to do per day. I try but it is hard. Thank you for your posts and it is reassuring to know that I'm not alone in this.

Right there with everybody! It’s a long, hard road.
I have been sick for two years. Never, ever seriously sick before having Covid. Since Covid, it’s one thing after another. Like everybody, I saw all the specialists in my area, and got no help. I waited months to get into a clinic that acknowledges LC. I’m still not better, but feel I have a chance to improve now that I’m working with people who are focused on the aftermath of Covid. I am up and down, hopeful and hopeless. Praying for even a little improvement in my condition.
Good luck to all.

I get the hopeful/hopeless pendulum! I have been long covid 4yrs progressive. I have long list of symptoms in common with so many of you, but I am blessed that my heart&lungs function and I am not bedridden . My husband is a stroke survivor & doesn't really comprehend why I can't just do what I've always done, but he is supportive....my whole family too. Spent a week @ MayoClinic 1yr ago, all testing normal of course.....in common with most of you. But I did get insight about "Central Sensitization " and coping longterm. No cure YET, but
Stay strong!! Stay encouraged! The whole scientific world knows and validates us finally!!!

Thank you Betty,
I try, try, try every day to stay positive. My issues are mostly in my head with tinnitus and hyperacusis along with hearing loss. It’s a weird stew of symptoms that nobody really understands. My vision is also foggy and of course all of this affects my thinking. I do believe Central Sensitization is at play here. I finally have good doctors and hearing specialists working with me. My family props me up.
I struggle on.