1. < Post-COVID Recovery & COVID-19

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.

atassi15 | @atassi15 | Jun 25, 2023
In reply to @dawnfensterbusch "Get you a Bible you can understand or a book called “read the BiBLE in a..." + (show)
@dawnfensterbusch

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!”

Jump to this post

My dad had the same advice for me. Thank you! I will definitely do that. I know for a fact I couldn't have made it this far with my faith and God's support

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @longcovidcelsi "Longcovid Class of 2020 here. You have all my sympathy. August will be three years of..." + (show)
@longcovidcelsi

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.

Jump to this post

Thank you SO much for your reply! It means so much to me. I also am 33 and used to be so healthy before all of this. It's been so life altering to say the least. I really appreciate you taking the time to reply and helping me to not feel alone. I will definitely look into the lactic acid test also. Thanks again and hang in there!🙏

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @britelite "Yep! COVID - the gift that keeps on giving! Once you think you’ve got a handle..." + (show)
@britelite

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.

Jump to this post

Yes it is the gift that keeps giving alright!! No doubt about that. Thank you so much for your reply. Im sorry you haven't found any answers for your problems either. I wouldn't wish any of this on my worst enemy, but it is comforting to hear from others and to know you're not alone. Thank you!

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @lolabelle59 "Hi, atassi15. Really sorry things are the way they are. I'm not dealing with things nearly..." + (show)
@lolabelle59

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.

Jump to this post

Thank you so much for your reply, it means a lot to me! It gives me hope to hear from others and to see all the kind words and advice others have to offer. I'm so, so sorry you are having such a tough time as well. It's just crazy to think of all the ways It's changed our lives. I really hope you start to turn a corner soon and wish you all the best 🙏 We are all in this together!

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @rmca "A layperson’s explanation of the dilemma as a long hauler advocate... Two and a half years..." + (show)
@rmca

A layperson’s explanation of the dilemma as a long hauler advocate...
Two and a half years later and too many in and out visits to physicians who informed me my tests are normal, I remain placed in the boxes from medical schools that call neuropathy neuropathy and fatigue fatigue. Every other symptom post Covid retains a familiar label with either standard treatment to address the issue or no treatment at all because the contamination by Covid prevents an out of the box approach.
This is understandable, save for the fact that providers are unaware of up to date research findings and really appear to be too overwhelmed to re-educate themselves. It appears easier to pass patients down the line to another “specialist” who might be curious enough to go the extra mile.

Numerous research articles have suggested presenting the information on their visits. Personal attempts have failed to ignite the interest I had hoped to receive and it’s rather professionally shameful.

So, as I have viewed on internet long hauler interactions, it’s self advocate, do your own scavenging for current information and hope that you are lucky enough to happen upon articles like, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms.” This particular article was so comprehensive and validating regarding my own discovery of cytokine over-expression as most likely a main culprit in all that is insanely occurring since the invasion. Now I am cytokine obsessive. I am concentrated on discovering all I can to address my current and unending issues...but definitely way ahead of where I was 2 1/2 years ago when I contracted Covid.

As an example, I am currently using the research on famotidine (Pepcid) as a cytokine calmer, if you will. I will do this for two weeks to see whether or not there is any impact on symptoms. With this example, I also state that no one should follow anything I say without approval by their doctor. I am just not willing to wait for any doctor I have seen to catch up with me. I will continue to book appointments with new doctors as I regularly do to see whether or not they reached the point of thinking out side of the box of med school labels and into the virtually unknown Covid realm that might in fact offer some newer insight regarding the symptoms of the moment. Permit me to fantasize for all of us and imagine the fatigue...the worst of the worst.... has found a cure!!! Meanwhile, I don’t do coffee, but a can of V8 Energy 10 cal drink amazingly kickstarts my day and I move and function. Woman’s got to do what a woman’s got to do!

All of my bazillion tests are normal. I am not on any medications. BP normal. Blood sugar normal. Cholesterol normal.
Covid residuals:
tingling and numbness in lower legs,
bottom of feet (awful) BUT no
pain they talk about with non Covid
neuropathy
Weakness in legs
Equilibrium issues
Osteoporosis onset post Covid—-
research supports causation
Bursitis/tendinitis- onset post Covid
(horribly painful)
Extreme phlegm, constant runny nose
Attacks of itching and hives (in remission
since famotidine—common
usage as an antihistamine. My focus on
cytokine involvement and
famotidine outside its own
“box”....aka...off label).
Problem is that doctors are too susceptible to using age as a framework for treatment. We don’t all fit in the “old age” box.

I take 20 plus supplements that I have incorporated as I discovered their affect on Covid issues and inflammation. Whereas I was virtually non functional in the early months of my Covid experience, I am functional with my symptoms. I exercise daily. I was always an avid (obsessive) exerciser ...weightlifting daily 10, 15, 20 lb weights. I have to moderate now, but am determined to keep doing the repair work. It’s horribly frustrating at times but I’m a firm believer that you are your thoughts. “Think lovely thoughts” and get in gear to make some kind of progress today. Doesn’t have to be big.

If nothing else for the day, read the article I mentioned earlier, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms”. Just Google the title. Or give it to your doctor.

If you can get them to do a cytokine panel it might just reveal useful information for calming the out-of-wack cytokine levels. Should be a standard test by doctors seeing long haulers. Ya think!! There are meds to treat and natural supplements. I do the later....curcumin, piperine , plus the famotidine.
One trick...keep moving. To the mailbox and back is better than laying in your bed day after day. Move it. Undepress yourself with hope.Negative thoughts rob you of your abilities to get done what needs to get done.

I try and practice what I preach. It’s really difficult at times..But I’m giving it my best shot. Don’t permit tomorrow to be the same as today. Make it better for yourself.

Jump to this post

Thank you so, so much for your reply. I couldnt agree more on so many things. Wow, it certainly is true that we must learn to be our own advocate and take this into our own hands. I was just about this to my mom last night. It's unfortunate that we have to fight this hard to try and get the help we deserve, but what's the alternative? Wait for others to catch up like you said?
It's just hard because you start to feel crazy after awhile. Doctor after doctor. Test after test. They start to make you feel like you're the problem. When all we're trying to do is get help and to feel normal again. It's incredibly frustrating and mentally and physically draining.
Anyway, thank you again for your reply. I admire your strength in fighting to get what you need!

REPLY
auntb65 | @auntb65 | Jun 25, 2023
In reply to @atassi15 "Thank you so much for your reply and for your advice! I've had a few people..." + (show)
@atassi15

Thank you so much for your reply and for your advice! I've had a few people recommend acupuncture to me. I'm definitely going to have to do that. I'm so sorry you have been going through a tough time yourself. You are not alone! Thanks again for your reply 🙂

Jump to this post

I was skeptical at first. So glad I went ahead and tried it. Good luck! I hope it helps you as well!!

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @okradurham "Hate to jinx myself but I’ve had 4 , yes FOUR , good days in the..." + (show)
@okradurham

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‼️‼️‼️

Jump to this post

I'm so happy to hear of your good days!! That's amazing. It honestly is worth celebrating-- every single good day is a cause for celebration. I've learned that those are the days that carry us through. Knowing that even through our toughest days, we have good days too. Thanks so much for your reply! Sending you love & healing energy! 🙏

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @kamander "So sorry to hear your suffering and frustration. I think many of us are in your..." + (show)
@kamander

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

Jump to this post

Thank you so much for your reply! I will definitely look into Gez Medinger. I am so appreciative of all the advice others are willing to share. Anything helps! And we are all in this together. There is something so comforting about knowing that there are others out there who understand. Because a lot of times many people around us don't understand, and it often feels incredibly lonely. So thank you again for your reply, it means a lot! Wishing you all the best 🙏

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @jesmorales "You are not alone. I’ve been a long hauler since 11/2020. I have days where I..." + (show)
@jesmorales

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.

Jump to this post

Thank you so much for your reply. It definitely helps to know we are not alone and that there are others out there who understand. I wish we could all be healed too, I really do. I often worry we are forgotten too. The whole world seems to be moving on from the pandemic, and we are left in this hell still dealing with our health and our lives being turned upside down. It's definitely easy to lose hope some days.
But I really appreciate your reply. You are right, the one thing we do all have is each other! And there's so much power in that 💗

REPLY
atassi15 | @atassi15 | Jun 25, 2023
In reply to @tchrart "The medical community does have much to learn about long Covid. I had Covid last September,..." + (show)
@tchrart

The medical community does have much to learn about long Covid. I had Covid last September, took paxlovid that really helped, but at times I still get the feeling of exhaustion.
Taking into account that I’m getting older and have a couple of minor health issues I still don’t know why the feeling of tiredness still exists.
I’m now walking 3-5 miles each day and that seems to help.
Good luck to you.

Jump to this post

I definitely agree that the Healthcare community has much to learn about this and the long-covid population. I've also been trying to walk a lot more and it does help. Both physically and mentally, it's been great. Thanks so much for your reply. Hang in there!

REPLY
View MoreView Less
Please sign in or register to post a reply.