How many people do you know that have Long Covid?

Bless You. I have long covid and am scheduled to be seen in a long covid recovery clinic next month. My symptoms are excessive sticky saliva 24/7 with a white tongue (It is not thrush), uptick in GERD and inflammation. I am being treated for lupus since having COVID. I never had borderline Lupus until having COVID. I am convinced that COVID attacks areas where you tend to be weaker. There is still so much we do not know about COVID. I think there are people who probably are longhaulers and do not make a connection with it being from COVID. I wish you the very best. Hugs & Prayers....

Good luck to you with your appointment. I've also had an uptick in my GERD, I didn't even think that it was part of my Long Covid! You're right, there is still so much they don't know. When I got this 3 years ago I couldn't find hardly anything about it on the internet - now you can find all kinds of things. Also, I felt so sorry for all my doctors because they knew so little and really wanted to help me feel better, but they just didn't know what to do for me. God Bless!

Oops, just so you know ... I meant to hit reply to you, but I inadvertently hit comment so that next comment is meant for you 😊

To kgnteacher: I’ve been looking at this site for awhile now, and the best part by far is knowing that others have your symptoms! That means validation…IF you stick with the chat posts that are pertinent to you. So, I was thinking about what you said, about only knowing 3 people? If that is most of America? If most know only 3? That is a LOT of people. (I think it’s probably (?) rare to know anyone well who has it, but just guessing based on the chat threads.) I think the numbers are definitely there. I just saw an immunology practice today, and already I know they are going to help somewhat. The long Covid program I was in, CLOSED!!— and I’m pretty sure why. Theres not a lot of flashy press on people who are dealing with long Covid.

So. Dive in. What ARE your symptoms??

I didn't think of it that way before. You're right, if each of us know approximately 3 people that does add up to a lot. I agree, there isn't a lot of press and I find that other than my family and friends, when I talk to strangers about LC they don't know what I'm talking about. My symptoms are: shortness of breath which is made worse by hot, humid weather and cold weather, chest pain, heart palpitations, dizziness, brain fog, fatigue - I sleep up to 15 hours a day/night, upset stomach, headaches, occasional vomiting.

About 4 months ago I've started sweating excessively every night and I wake up and my pajamas are absolutely soaked. It's awful and way worse than when I was going through menopause. I'm also starting to sweat like crazy during the day. This week I started having changes to my sense of smell and taste. It amazes me that I've had LC for almost 3 years and I'm still getting new symptoms! What are your symptoms? What will they do for you at the Immunology Practice? I was going to Pulmonary Rehab for my shortness of breath and heart issues and it helped somewhat, but of course not as much as I was hoping.

So far the immuno. is starting w/ 32 blood tests(!) and an asthma test that I finally failed! That sounds crazy, but I kept on testing normal, and then brushed off. So I’m thrilled. It was an unusual test, one I haven’t had before.
Have you seen the LC threads on sweating here? You are not the only one… and I’m not experiencing that anymore— THANK HEAVEN!!
Have you been in a treatment clinic? Your symptoms sound awful.
These are my highlights:
breathing, fatigue (!!), brain fog, dizziness, and syncope, hormonal turbulence— currently thyroid and adrenals—, and problems with swallowing. Other sundry stuff (blurry vision, hair falling out, exercise intolerance, some Neuro stuff).

Swallowing yes almost had to run out of the house to beg for help I was choking so badly!! That symptom has lessened however I am now on so many supplements it always worries me it will happen again!! A friend of mine has had LC for 3 years and is wheel chair bound!

I only know one other person, personally, who has longcovid, and I've heard of one other person in my community who has suffered seizures after having covid (they're a teenager, poor chap). I'm also very isolated with terrible nervous system and cardiovascular symptoms. I'm 35 and I can't walk much further than a few yards and I can't be social or excited for too long or I get this weird neuro-lymphatic inflammation and pain, so I've basically had to live like a hermit for the last 2 and a half years. Kind of like @car0 in having weird other random stuff - hair loss, I can't yawn anymore??? (not fully. A yawn starts and then at the top it's like it can't follow through), random pain.
Main treatments that have worked the best for me: mild hyperbaric therapy, vielight up the nose, a cheap pop-up home ir-sauna that helps a lot with the pain, and lots of quiet where I can find it.

Hi...I totally understand how you feel. I had Covid in December 2022 and my body and my life hasn't been the same. Many doctors visits, labs, consultations and not a single doctor has been able to find an explanation. My long Covid symptoms have gotten better with time, but spending all these months feeling unwell has put me in a permanent state of anxiety. And like you, besides my sister, I don't know anyone who is struggling with long Covid. You're not alone! We're strangers, but you have my support if you need to write about your symptoms. Wish you the best!

I have been struggling with continuous joint pain, fatigue, hair loss, blurry vision and horrible night sweats.