I don't know what to do anymore

Posted by atassi15 @atassi15, Jun 22, 2023

I don't even know where to begin. I just feel an overwhelming sense of hopelessness. I've had long-covid since Jan 2022 and it's just been one thing after the next. There was a period between end of last year and early part of this year where I thought I was turning a corner, but I feel like I've suffered a major relapse and now feel even worse than I did last year.
The migraines are the worst they've ever been. My insomnia has returned. Extreme joint/muscle pain. Major GI issues. Weird rashes. Chest pain. Red hands and feet. I just feel like it's a never ending nightmare, that most people don't understand. Unless you've suffered or still suffer from LC, most people don't get it or they think you're making shit up.
I never used to be a hypochondriac before LC, and now I constantly live in fear for my health and life. I worry about chronic diseases, cancer, heart attacks, blot clots... just constant worry that I'll die from this.
I don't know what to do anymore. I am grateful for being apart of this LC program at the U of M. I've seen countless specialists. It's comforting in some sense to get checked and to have doctors that try to help you figure out what's going on. But when tests come back normal, you feel back at square one. And you're still in pain. I just wish I could feel normal again. I feel like I don't even recognize myself anymore.
Thank you for taking the time to read this. I have found that reaching out to others with LC does help. I wouldn't wish this on my worst enemy. But there is some comfort in knowing that there are others out there who understand.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

auntb65 | @auntb65 | Jun 23, 2023

I had covid November 2021. Still dealing with the dizziness and brain fog. This group has helped so much. Knowing I’m not alone and seeing what others are dealing with. And it helps to see what others are trying to get relief. So frustrating to hear doctors tell me my tests are normal and I just need to give it more time.
I am currently seeing an acupuncturist and that has helped tremendously with treatments, herbs and diet. Hoping this is finally my answer. Hang in there and I hope you find relief soon!!

covidstinks2023 | @covidstinks2023 | Jun 23, 2023

atassi15, I get it. Please get a workup done by a rheumatologist. I felt my pre-existing inflammation go up after Covid and I now am being treated for borderline Lupus and am now on Plaquenil which has helped greatly with my pain and inflammation. My reflux worsened and so did some other things. Covid is brutal. I was diagnosed with long Covid in May. Do you have a long Covid recovery clinic in your area? Praying for you to get better. Blessings...

dawnfensterbusch | @dawnfensterbusch | Jun 23, 2023

Get you a Bible you can understand or a book called “read the BiBLE in a year” and start reading it everyday, even if you don’t understand…..it will give you “a peace that passes all understanding!”

longcovidcelsi | @longcovidcelsi | Jun 23, 2023

Longcovid Class of 2020 here. You have all my sympathy. August will be three years of debilitation. Was 33 years old and healthy. Now I put my functionality at a solid 85.
I’m sorry you’ve had such a hard time. If it helps, I know you’re not making it up. A lot of us know you aren’t 💕.
I haven’t seen much improvement and literally zero testing has come back with anything useful.
However I just got my lactic acid tested and my resting levels were through the roof. I would highly recommend. See the lactic acid longcovid thread for more deets.

britelite | @britelite | Jun 23, 2023

Yep! COVID - the gift that keeps on giving! Once you think you’ve got a handle on things, BAM! - it’ll come back and hit you with something new or worse. I’ve been there, done that and pretty sick of it all. But we keep plodding along hoping for a solution or the time when we’ll get better. I’m so sorry you’re going through all your hardships and wish I could offer some solutions but haven’t found any for my problems either. I guess, just hang in there and know that you’re not alone in this. Bless you.

lolabelle59 | @lolabelle59 | Jun 23, 2023

Hi, atassi15. Really sorry things are the way they are. I'm not dealing with things nearly as long/concerning as you are, but I hear you about not being a hypochondriac, etc. I think we have to keep trying things - someone suggested a rheumatologist, someone else has had success with acupuncture (I would be interested to know what herbs and diet you use/follow, auntb65) - until we have some level of our former health back. Had a mild (was vaxxed and boosted) covid bout in December, and recovered well enough to go back to work within a week or so. Narcolepsy type of fatigue and GI tract issues started in February, with GI tract issues getting worse, lately. Had three incidents of bowel incontinence this week, similar to what I experienced when I had covid. Luckily, I was at home, each time. Taking digestive enzymes and probiotics. Thinking maybe I should take Imodium before I go to bed, but then concerned the inevitable (?) could happen while I'm commuting/at work. Wishing everyone the best.

okradurham | @okradurham | Jun 23, 2023

Hate to jinx myself but I’ve had 4 , yes FOUR , good days in the last two weeks 😊😊!!! Almost felt normal no it didn’t last but it’s out there somewhere! Now today was fairly good as well . So hopefully we will all feel better soon !
I had a heart echocardiogram this week the last of many many tests and watching that heartbeat and MY heart I really began to realize what a miracle our bodies are and how greatful I am that mine has joined me in this fight . We are working together my body and I and we will beat this enemy‼️‼️‼️

kamander | @kamander | Jun 23, 2023

So sorry to hear your suffering and frustration. I think many of us are in your shoes right now. I have been doing lots of research and found Gez Medinger on YouTube who answers many questions. Thankfully there are lots of videos from Gez on great topics of Long Covid and research! I got his kindle book on Amazon: the long covid book gez medinger. I like this article: https://www.nature.com/articles/s41579-022-00846-2.
And it seems that research is finally starting to really move forward.
It's a long haul with Long Covid! But there is hope and light at the end of the tunnel. Keep on keeping on!
Cheers,
Kate

X | @jesmorales | Jun 23, 2023

You are not alone. I’ve been a long hauler since 11/2020. I have days where I want to give up because I’m tired of people not believing me or saying what’s long Covid….really by now people still don’t know about this. It makes me loose hope that is anyone trying to find a cure? Are we forgotten? It’s not fair and every day I wish I could go back to how I felt before all of this. We could never make all this up, all these symptoms are very real. I tried to go back to work and now have kidney issues, I’m tired all the time, my body
Is weak. If I could heal us all I would in a heartbeat 💗 Don’t give up, we all have each other on here.

evelyn2023 | @evelyn2023 | Jun 24, 2023

I totally understand. I've been dealing with health issues since December 2022, when I got Covid for the first time. I used to be a healthy woman. Now, I'm a totally different person. Many symptoms are gone. I started having GI issues since March 2023, which have gotten better with a gluten-free and low FODMAP diet. Going back to exercise has helped a lot too. I still struggle with sudden episodes of dizziness (on the back of my head) and weakness. I haven't consulted a Neurologist lately because I'm tired of being looked at like I'm making this up or under anxiety/panic attacks. Unfortunately, the medical community is lost when it comes to Long Covid symptoms. They simply haven't found a way to help patients. I'm hoping my dizziness goes away, as my other symptoms did.
Hope you feel better in time. Have faith!