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Having long COVID, how is your mental health?

Posted by mbryant1380 @mbryant1380, Nov 6 8:32am

Hi everyone,
I have posted on here several times and find this a comforting and safe space. On here most conversations are about physical issues/symptoms, and sharing experiences, treatments, articles etc. and people will add on about how this illness/condition has weighed on them mentally and emotionally as well.
I am STILL finding it a struggle to mentally and emotionally cope and navigate through on a daily basis. I try and take on the sentiment of “it could be worse” or “be grateful you woke up this morning”. And I know all of those statements are true, everyday I try and humble myself into a mental space of gratitude and appreciation, but it is sooo difficult most days. My daughter tells me “small things mommy you have to celebrate”. Things like that she will tell me to keep my spirits up. For me it’s the symptoms that strain my mental and emotional state. I’m sure a lot of you can relate to having multiple symptoms and feeling like the symptoms are winning at times. And maybe not getting much help from the medical community from either tests not giving answers, treatment(s) not effective and/or being dismissed, not believed and unsupported.
How are you all able to live by those sentiments? When you wake up in pain with not much relief day after day, week after week, months and years after another, what gets you through? I know there are people going through much worse, that’s not even Covid related. But should what we are going through be invalidated because we “woke up this morning” or “it could be worse”? And please forgive me if I’m being a Debbie downer, because this should be a place for uplifting and giving positivity to each other. I think the frustration is getting to me after going through this for the last three years. Trying to hold on to hope and faith that things will get better is such a back and forth battle for me.
So I’m basically looking for inspiration and feedback on what mentally gets you through? What drives your hope and faith? Maybe this conversation will help others find some perspective and light as well.
Thank You ☺️

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

ericy210 | @ericy210 | 1 day ago

I try to expect no improvement. A go to endless doctors, but there’s no magic bullet. I’ve started getting joint pain, but it is what it is. My speech is messed up. People close to me help, especially if my brain is overwhelmed with many people in a room. I find joy in producing music in my basement studio. Nobody enters when I’m in there. It’s like the one place I can be myself and get lost in creating guitar and keyboard recordings . Otherwise, Covid’s always on my mind and there’s not I can do about it.

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1 reply
klf58 | @klf58 | 16 hours ago

It's difficult. I already had PTSD and my depression has worsened with long covid as I grieve the person I was before I got sick in March of 2020. I go to therapy. I try to practice gratitude, but having almost died when I got the original variant, along with having serious ongoing health issues post covid, it can be very difficult to stay positive.

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dreaminasecond | @dreaminasecond | 15 hours ago

So, interesting. I came to share. I have long Covid or I get it about 9 months afterwards but after 3 bouts, I am wrecked. Even though I have been receiving IVIG for 8 mo. It has definitely saved my life. But on mental health. This crazy shit! So now, I know I have really bad fibromyalgia probably had it forever. I also have a hyper thyroid. I had a doctor in '22 insist on imaging and tapered me and then dropped me as a patient sending me back to my primary who I ended up replacing. I'm dying. I can't get anyone to listen to me. When my thyroid is at certain levels it triggers first me/CFS at .70 and then at .5 I get deathly ill. It's like pouring gasoline on these autoimmune diseases I have accumulated with long Covid (MCAS/HEDS..)
So, my thyroid became hyper again 3-4 weeks ago and it spurred a fibromyalgia flare up and I lost my mind! The anxiety over my broken brain took me straight to suicidal thoughts. They said I have neural inflammation. God help me 🙏 I'm so tired. I'm so sorry for everyone here.
They gave me 10 .25 Xanax it worked they refilled it (immunologist) but then my psychiatrist changed it to clonopine and it doesn't quite work but may keep me from becoming suicidal. So I ran out Friday and was losing my mind. I increased my thyroid medication and within 2 days improved. I also drank some big crazy beer concoction on Friday, just 1 (I don't drink) but omygosh I felt better and slept for 14 hours in peace. Not hungover or anything but just calm. Saturday I drank another when I started bugging out 24 hours later, same thing - I slept well. By Sunday, yesterday my thyroid has slowed down enough that the neural surge is in my body and not my brain. I don't know if they'll let me share this but, hang in there! And I love you!! I really do!

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friedrich | @friedrich | 13 hours ago
In reply to @ericy210 "I try to expect no improvement. A go to endless doctors, but there’s no magic bullet...." + (show)
@ericy210

I try to expect no improvement. A go to endless doctors, but there’s no magic bullet. I’ve started getting joint pain, but it is what it is. My speech is messed up. People close to me help, especially if my brain is overwhelmed with many people in a room. I find joy in producing music in my basement studio. Nobody enters when I’m in there. It’s like the one place I can be myself and get lost in creating guitar and keyboard recordings . Otherwise, Covid’s always on my mind and there’s not I can do about it.

Jump to this post

To ericy210:

How resourceful! Using your musical talents to create Joy for yourself in the midst of your LC symptoms!

— friedrich

REPLY
trevors | @trevors | 8 hours ago

I have had LC since June 2020, including brain fog that has been to the point that I started looking into what I would need to do to collect disability. This had an enormous effect on my mental health, as would any chronic illness, and I believe that LC also has a direct effect on mental health. For more than two and a half years I had no desire to participate in life.

I am taking the following medications/supplements, each of which I believe has a positive effect on my brain fog and mental health. I now enjoy life again. I'm not 100% but I am probably around 80%. I have reached the point where, if I was told that I would never get any better than this, I’d be ok (which was not the case for those 2.5 years).

I have no idea if any of these will help anyone else, but I thought I should put it out there in case it does. There is information online about these, including studies relating to long covid for most — if you can’t find anything let me know and I’ll dig out my links.

Only the first of these was suggested by one of my doctors/specialists. All the rest I found searching online, or the information was forwarded to me by a friend or family member.

Here are the medications:

Vyvanse. (You could also try any other ADHD stimulant such as Ritalin or Adderall. Vyvanse is more expensive but it works better for me than the others)

Guanfacine and NAC (N-Acetyl Cysteine) Guanfacine is a non-stimulant ADHD medication that helps with executive functioning.

Famotidine (40mg twice a day. The normal dose of 20mg didn’t have any effect on brain fog). This is also know as Pepcid, and is a stomach acid controller. However, it is also a strong anti inflammatory *and* it is one of the few medications that crosses the barrier into the brain.

REPLY
1 reply
friedrich | @friedrich | 5 hours ago
In reply to @trevors "I have had LC since June 2020, including brain fog that has been to the point..." + (show)
@trevors

I have had LC since June 2020, including brain fog that has been to the point that I started looking into what I would need to do to collect disability. This had an enormous effect on my mental health, as would any chronic illness, and I believe that LC also has a direct effect on mental health. For more than two and a half years I had no desire to participate in life.

I am taking the following medications/supplements, each of which I believe has a positive effect on my brain fog and mental health. I now enjoy life again. I'm not 100% but I am probably around 80%. I have reached the point where, if I was told that I would never get any better than this, I’d be ok (which was not the case for those 2.5 years).

I have no idea if any of these will help anyone else, but I thought I should put it out there in case it does. There is information online about these, including studies relating to long covid for most — if you can’t find anything let me know and I’ll dig out my links.

Only the first of these was suggested by one of my doctors/specialists. All the rest I found searching online, or the information was forwarded to me by a friend or family member.

Here are the medications:

Vyvanse. (You could also try any other ADHD stimulant such as Ritalin or Adderall. Vyvanse is more expensive but it works better for me than the others)

Guanfacine and NAC (N-Acetyl Cysteine) Guanfacine is a non-stimulant ADHD medication that helps with executive functioning.

Famotidine (40mg twice a day. The normal dose of 20mg didn’t have any effect on brain fog). This is also know as Pepcid, and is a stomach acid controller. However, it is also a strong anti inflammatory *and* it is one of the few medications that crosses the barrier into the brain.

Jump to this post

Reply to trevors:

Thank you for your articulate, detailed description of treatments that have worked for you.

Glad to hear how much they’ve helped you!

— friedrich

REPLY
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