Venting

@diverdown1, Bless you. I can so relate to so much of your pain. Praying for you.

It's ok to vent. We all need to just let it out sometimes and say how we feel. People truly do care.

I thank you for all of the research you are doing on LONG COVID. I pray one day there will be a cure for us.

Blessings & Prayers for you.....

Hang in there! I can certainly understand that some mornings seem better than others. I’ve felt the same thing. Sometimes there is so much pain and discomfort. Other times, not so much. It is so hard to understand Long Covid. It’s almost as if somebody gave us a 1000 piece jigsaw puzzle (Long COVID) and now we are trying to figure it out and put answers together. We find pieces to the puzzle here and there. Sometimes little nuggets of help from a study, from another doctor, from a program, from friends, a random article, reading this blog. I have found that there are no easy answers. However, we can come here. We are among people who truly do understand what we have been experiencing. So vent if you need to, Friend. There are kind ears waiting to listen.

I am going to vent some good news. I am an 85 year old woman coming up on a year of getting Covid and then Long Covid took over my life. At times the symptoms were overwhelming and so disabling that I was afraid to drive because the nuerological symptoms were so intense. My memory, hearing, concentration and focus and ability to retain what I read were all affected. And the fatigue was unlike anything I had ever experienced. But here is the good news. I have gradually been getting better. I no longer need a 2 hour nap every day after doing a few tasks, I can walk farther and stand longer and the brain fog and thick headed feeling are mostly gone. There is hope. I have chosen not to take any of the suggested supplements or treatments and trusted my Dr. who said that it should improve by a year. This space of hearing others share has been most helpful and I encourage those who are improving like I am, to offer others hope that some of us do get better.

I think all of us can relate. I unfortunately have had Covid almost every year (except 2023 and so far not this year…yet) since 2021, each time when I feel like the symptoms are declining, bam, I get it again! I feel like it has a personal vendetta out for me lol!
I belong to a support group and we meet twice a month via zoom where we vent, cry, share information, give love, encouragement and comfort to each other. And we were discussing that it feels like we can’t trust or feel safe in our bodies anymore. Yes there are many unfortunate things that can happen to us outside of Covid, but this “condition” is such a multi system disruptor you don’t know from day to day what we are going to burden with. Crazy that I have been like this for so long that I forgot what my body used to feel like symptom free.
My Covid recovery doctor says there are still studies going on and there are some doctors that are still trying to help us. He said there is a study going on for a drug called Baricitinib a Jak 2 kinase inhibitor. So some of the medical community has not forgotten us and believe it’s a real concern.
So I know it’s harder said than done but I try to enjoy the not so bad days and push through the bad ones, between this online support and my other support group it really I mean really helps.
Sending you all love and hope!

LC 5.5 years since Sept 2020.
I began calling my LC symptoms my "bag-o-symptoms" early on because the most persistent symptom(s) of the day seemed randomly chosen from all the symptoms I've had from the beginning. I have had great improvement of all symptoms in degree of intensity through the use of various therapies Rx, physical, mental health. My biggest breakthrough was the day I realized this condition isn't fatal. No more runs to ER. No real urgency to diagnose. I still follow up regularly with the docs, follow closely any new emerging knowledge and information, find encouragement and support from communities like this. Since I never know what I'll wake up to, the goal of each day is to live it to the best. Obviously, some days are 'best-er' than others, but that is life for anyone. Thank you everyone for making this a safe place! We are not alone. That one fact makes everything else better. Blessings upon all.

RECOVER-TLC Trials and Studies:
National Health Institute did trial glucagon-like peptide-1 (GLP-1 drugs like Zepbound) also known as tirzepatide LC. Plan was to use micro dosing of the GLP-1 drugs in patients with symptoms impacting memory, brain fog, energy loss, etc. This was the NIH announcement: https://cen.acs.org/pharmaceuticals/drug-development/NIH-plans-test-GLP-1s/103/web/2025/09

Also mentioned in the above web link is an E.I. Lilly trial. While NIH did trials on GLP-1 E.I. Lilly's trial includes the drug baricitinib for symptoms of Long COVID-19, appear to have had positive impacts (see above post in this feed for a sufferer who did see improvement with baricitinib, a rheumatoid arthritis drug).

For those interested, I found a post from another sufferer who used 'magic mushrooms' and it worked for this person: https://welldosedwellness.com/podcast/blog/microdosing-and-long-covid

Today was a dark anniversary for me, since today 6 years ago I went to Urgent Care with what initially was thought to be the flu. 7 weeks later I was still sick and lost my dream job. I've never recovered and have many blood disorders, cardiac and lung issues, daily migraines, constant fatigue...you all know the drill all too well. It's very hard to realize it has been this long and I will never be the same. I feel the world has moved on and left us all behind. I'm glad for those who have recovered and regained at least some prior quality of life. We are survivors, even though I often feel that it would have been better had I died when I first got covid, just because long covid feels like a living death. Thanks for listening. You are the only group who will understand.

I'm so sorry you are going through this. I scream at God often! Maybe something helpful will come our way.

@mbryant1380 even a cold sets me back.

I was thinking exactly this when I woke up. My rings are so tight I think I should just take them off. Knowing I'm not alone is so helpful