Post Covid Fear

Just heading out to an appointment or some common errand, and I start getting big butterflies in my stomach. Sometimes that triggers needing to find a bathroom. I even wake up in the night occasionally with those butterflies.
I use distracting techniques like saying the alphabet or Lord's prayer backwards outloud

I really hope you will try to tell a dr. What I’ve found with Long Haul is that we can share the exact same problem but find entirely different treatments that work for us. One person’s fix won’t work for the same person. Please— tell a therapist or telehealth dr or urgent care dr… they may give you something that will help! Meds, but also suggestions like— take a caffeine pill every day; check your thyroid; etc. Please. That just sounds untenable. I’d rather have physical symptoms than any Neuro ones!!!

We are a lot alike...Did you get Covid or just the fear of it itself?
Covid never scared me and it doesn't now...But something in my body changed
after getting it.

I had covid March 2020 & almost died. My doc asked me to go to emergency & they would probably put me back n a ventilator. I refused and said I would rather die at my home. I didn’t think I was going to make it through the night and wrote down contact information for my family to be contacted. When I woke up the next day, I was shocked! After that, I nursed myself back to health slowly and started feeling more like myself in July 2020. This is when I started have all kinds of problems like severe brain fog, writing backwards, unable to concentrate, and recreation of sinus problems that had been dormant for at least 10 years. This lead to surgery of my pituitary tumor, bone from skull sticking down into sinus cavity which had to be drilled down . I lost my executive functioning, organizational skills, and suddenly didn’t know how to manage my home. I finally was able to get a neurotically full work up and diagnosed with mild cognitive impairment. I have been afraid ever since I recovered in July from the actual disease but it continues. I’m almost scared if everything.

I have been to Mayo Clinic for a week. Multiple labs, tests. My legs had nerve function issues start last summer too. Mayo has kept close track of me. Offered multiple coping strategies. PostCovidSyndrome is
"Central Sensitization ".
All nerve systems in conjunction with the brain are no longer able to send and receive
messages correctly, so standard-of-care longtime remedies are not effective.....including a whole range of prescriptions. There is no cure, but are some things that can help until more research reveals more permanent solutions.

I'm so sorry so many of us are left with this anxiety. It's as debilitating (or more so) as any of the physical issues. It's like poisoning yourself from the inside out. But I applaud us all for recognizing it, that's the important first step I think. For me, what has helped (is helping) most is staying connected to people & things I love & enjoy & that renew my soul. And you know the old saying - bravery is doing it even when you are scared! For me, it's my family, especially grandkids, & going back to church & other events (even if I still wear a mask), PRAYER (I try to think Why worry when you can pray? as my inner theme), or meditating on peaceful words or ideas, devotional/inspirational books, sitting outside in nature or walking in nature if possible, gardening (now I'm doing more on the porch in pots ), painting or drawing, music I love, & watching old TV shows that make me laugh. So, what's some things you all do or want to do that we can add to the list?? Best wishes to all of you!!

Broken Record, here: please get help. Do not do this alone! Fear grows in shadow and isolation, loves corners and solitude! If you are not comfortable with professional help, please join a group like this one but that meets in person or online. I don’t know what resources Mayo has, I live far away, but. Please look around the site to see if they can give you a referral or assistance to get set up to see a dr or a psych Nurse Practioner in your area. She /He /They can help you get set up with group meetings, medications if you’re willing to try them, testing for deficiencies that may cause this distress. (Low thyroid can cause mental distress, brain inflammation can, etc for example.) NAMH is a great org, and THEY can help— (can you all guess what I do?)
The kicker about fear and anxiety is that going to see someone to get help causes… Fear. And Anxiety! Get someone to be with you— ask your mother to sit in while you call, or to even make the calls for appointments— for you. I wish I could beam you over to me, but I can’t. (Yet…)
Please do this for you. You are important enough to help. Truly.

Sorry for the delayed response. I got Covid March 2020 & was sick until June 2020.

With my diagnosis, they recommended I see a mental health doctor to discuss my anxiety and fear. It does affect the neuro but there is so much they do not know about it at this point. Most of the doctors seem curious but there are no long standing "orders" on how to treat one patient or the other. I had a zoom meeting with a mental health doctor, we discussed the affects of long covid and my anxiety levels for an hour. I was not prescribed Xanex, Prozac, Buspar or anything for my anxiety. She told me to download the Calm App. and call within a month. (what!?)

I know..sounds like bull and it was.

So frightened just diagnosed with CMML leukemia. After ten months of long Covid this shows up PRAYING this was caused by Covid and might correct itself meanwhile my mental health is a bit trashed!!!