Not Alone

I can relate to what you’re saying. I have health anxiety, so getting officially diagnosed with PCS has hit me hard. I try not to think about ailments, but with PCS, there seems to be one thing after another! At times, I feel I’m being tortured. Why? I’m a good person. I treat others with kindness and respect. Always worked hard. Have struggled for over 20 years with Type I diabetes. Then, I get hit with what seems like a thousand diseases. Now, I have hair loss! I try to be grateful, but man…..it’s a bear.

Sending positive vibes your way. All we can hope is that these things will run their course and leave. I hang on to hope.

I’m so sorry you’re struggling as well. I just said to my husband, I don’t want to be that “why me” person. But you’re so right it’s hard with so many different things affecting you at once.

Sending positive thoughts right back to you!

That’s right. I have never been a why me person, until PCS symptoms barraged me. It’s a bit overwhelming. I’m praying for grace ….and mercy. I hope you can find some too.

How is the Long Covid Program? I wish I could find one.

I just found this program the other day, my first appointment is January 5th, for an assessment. So will see how it goes and keep the group posted on any progress and or advice.

Oh! There are MILLIONS of Americans with long covid. There are groups on reddit, twitter, facebook…People in Canada and Swizterland and Australia have long covid.
There is research on lc.
The hypotheses are that lc is caused by:
1) Sarscov2 stays in our bodies..and in places our immune can’t get to
2)Covid causes microclots in our blood- which causes symptoms
3)Our immune systems are damaged by covid- leading to lc
Yale is doing great research and has a wonderful lc clinic
I am hopeful that 2024 will see more trials..
Hiv antivirals are being tried with lc patients with success
Personally, based on my immunoglobulin, cyokine, leuketrine results- I think that covid continues to have a party in my fat cells and other places..I feel like I have covid everyday…plus the bone and nerve pain. My meds manage the pain…but that’s all. There are not any treatments for long covid…
At least not yet

I researched and many articles confirm everything you just said. I have a feeling it will be a long road ahead in terms of finding treatments and or management for us (I really hope not, so many of us are really suffering) So sorry to hear you are also going through your own difficulties from COVID. I have an appointment with NYU Langone Long Covid program, in NYC, hoping to at least gain some insight on this condition. Don’t know if they will be able to help ease some of the physical symptoms but at this point just knowing there are people who recognize that these symptoms are real, (a few doctors brushed it off as a mental and emotional condition) I think will ease the mental and emotional strain this has put on me.
Wishing you better health

I just wish there was a way to determine what is caused by covid and what has another origin.

The best contact I got with Long Covid Symptoms came from my niece. She told me there was a Post Covid 19 Recovery Clinic a half hour from my home. Looked it up online and called on Monday. First virtual interview was question and answer with a nurse the next week. The following week I met with the nurse practitioner who runs the program. Face to face question and answer, recorded on her laptop. No clinical evaluation. The first thing she addressed was daytime sleepiness. She asked if I’d had a sleep study. I went in two weeks, and was diagnosed with severe sleep apnea. The sleep tech had to put oxygen on me at 2 AM. My O2 level dropped to 85%. The CPAP is my new best friend. I used to wake up 5-6 times a night, used the bathroom, thinking that woke me up. Now, using the CPAP, I wake up once during the night to use the bathroom. Finding a local recovery clinic can get you the referrals you need to recover and heal. She also referred me for testing. Hang in there. I have prayed for wisdom and direction in my Covid recovery.

My belief is that anything new to your body post Covid 19 is caused by Covid 19.

Take one day at a time and don’t give up! That’s what I try to tell myself daily. Sometimes I feel my quality of life is so diminished, that is hard to do. The worst part of this for me is dealing with doctors that gaslight. They don’t know how to fix you, so they want to dismiss your symptoms because they can’t figure it out easily. My blood pressure goes up on the days I have bad muscle aches and the doctors are perplexed as to why my blood pressure is up. . There are days I feel defeated but then I make myself get back up again. I’ve not felt well since I first got Covid in March 2020 but have figured out some ways to have better days. Keep trying your best and know you are not alone. Unfortunately, there are lots of us with long covid.