Who here have LC so bad they can’t work or hardly leave the house?

Hi Kelly,
I’m Madelyn and I am here in NYC. So sorry to hear you are suffering through this as well. I would really like that and would absolutely join a chat support group!

I got COVID in October of 2020 just before the vaccine came out. After a couple months, I got so dizzy that I could hardly walk. I have steadily grown worse and now I can't walk without a walker and then only for short distances. I can't exercise well, so I have gained weight and that has made my knees hurt. I have been to all kinds of doctors and haven't gotten much help. But then no one knows how to cure the disease, so I don't blame them. I have tried to get into Mayo, but got rejected 3 times, but I did get into Cleveland Clinic and will go there in late November. There is no way I could work as I can't really concentrate all that well. Does anyone else suffer from dizziness and balance problems?

It took me over 3 years to finally be diagnosed with LC. LC isn't really a diagnosis, it is more that the virus triggered bad cells to activate. My autonomic Nervous System is a mess. This causes the GI issues, nerve issues, etc. I have POTS. I would recommend wearing compressions socks or an abdominal binder. It helps. I would also eat lots of salt or take salt tablets you can find on line. I am on both gabapentin and cymbalta. They help, but nothing fixes/cures any of this. I had a happy, healthy, active life before this. I can't drive anymore. I have the extreme form of neuropathy, CRPS, in my right foot, my hands, my back and my neck. It is miserable. Surgery seems to make it go crazy. I have had 3 surgeries and they were minor but insanely painful due to the neuropathy. I have autoimmune issues. I am still working, but working from home. I have brain fog. I have times that I just can't think. It is terrifying and embarrassing. I have to time my meetings carefully and end up rescheduling a lot of them due to having bad days. I can think the right thing but what I say will make no sense. My hands have gotten really bad. I see a doctor Wednesday. I have a really good Rheumatologist and am seen by the Johns Hopkins Long COVID clinic. I am afraid I am going to lose my ability to work. It is helpful to finally have doctors who believe me and provide care with taking all the symptoms I have in consideration. But I find I still have new issues come up or the neuropathy getting worse in different areas of my body. If there is too much going on around me, I can't function. It is so sad. Good luck. I hope you get help. I hope someday someone will be able to figure out how to help more. I have gastroparesis. I really don't like food anymore. I eat one meal a day if it doesn't smell bad. I am somehow fat, which seems so unfair. I have good days and bad days. I think I am on the verge of losing my ability to work. I grieve each new thing I lose. But I do thank God I am alive. I am hoping to find a way to live the best life I can. I really hope we can all do that.

Hi, I’m Kelly and sorry you are feeling so bad. I will be using your post for my Dr. I am trying to show each and every Dr. it seems like my GP has very few long Covid patients. Though she was the first to diagnose me over 3 years ago. At that time they called long hauler (remember ) and it only lasted 3 months. HA! Not even close.

Hi, I’m Kelly and sorry you are feeling so bad. I will be using your post for my Dr. I am trying to show each and every Dr. it seems like my GP has very few long Covid patients. Though she was the first to diagnose me over 3 years ago. At that time they called long hauler (remember ) and it only lasted 3 months. HA! Not even close.

Hello Kelly. Keep pushing. I had to keep pushing to get to where I am now. Do research. This group is helpful with providing links to information as well as helping with the feeling that we are not alone. Not that I would wish this on anyone. Let me know if there is anything I can do to help. Good luck! Susan

I had it first in 2020. Continued to try to work for a out 3 yrs until I got covid again in 2022. I even cut my house trying to continue working. I retired early after that

Long Covid since September/October 2023. A year now. Tired and drained from Chronic Fatigue syndrome. Cannot work. They would fire me on day one with this mess.

I have lost 45 lbs from lack of appetite and the funny texture syndrome of food-labeld anorexic. Dizzy and tired. Have thrown up a gazillion times this year. I have had an MRI, Cat Scan, Heart Scan, Xrays of lungs, Breathing tests, EGD, have given so much blood for tests.

Therapies: first it was Paxlovid, then a barrage of prescriptions too many to name. Vitamins, supplements, self tests of trying Coriciden BP for a week to get rid of excess mucous in nose and throat. Seemed to help.
Mindful Meditation does help a bit but doesn't alleviate symptoms. Right now I am doing detox baths and showers which help my depression and body aches and the general feeling of ick. I am trying Weed which helps with nausea and appetite.
I have been in 3 test groups.
I am my own test subject since the medical team has failed us.