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

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@smdawson540

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.

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Replies to "It took me over 3 years to finally be diagnosed with LC. LC isn't really a..."

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.