Connect
New here. Have this Post Covid for over 5 years. I need help desperate
I got Covid 4/2020. After I tested negative I went back to work even though I couldn't stop coughing, had terrible fatigue, couldn't breathe and had severe chest pains.
I lasted an hour at work before they rushed me to the hospital. I was taken to one of the best hospitals (I think top 25) North Shore University Hospital. They had 4 doctors on me within 10 minutes.
They tested me for Covid. Came back negative. I was still having difficulty breathing, persistent cough, kidney function was failing, Liver had something wrong.
I was hospitalized for a week. 3 covid tests all came back negative. They were giving me medicine for I don't know what. Heart attack was ruled out. Kidneys and liver mysteriously rebounded back to normal.
After discharge I went to every kind of doctor. Cardio said my heart was in great shape (I was 57 at the time) but the dr thought the virus damaged some lining over the heart which caused the pain. Pulmonary dr said my lungs were clear ( never smoked in my life). Neuro dr found nothing wrong. Hemo dr found nothing wrong. GI dr found nothing wrong.
Nephro dr ( kidneys) found nothing wrong.
Over the ensuing years I tried to get help. Many doctors hadn't even heard of post covid.
So here I am disabled, unable to stand or walk for more than 5-7 minutes. I can barely take a shower, it leaves me so exhausted and out of breathe I can barely make it back to my recliner. I have this brain fog thing, I get side tracked and confused when Im trying to do something.
Im ashamed to admit that as a result I only take a shower and shave once a week. If I take the garbage out its the same thing, feels like I just ran a couple of miles.
My poor wife has had to pick up the slack around the house. She's amazing though, she never complains and takes care of me. Thank God I was able to get Social Security Disability.
If anyone here knows where I can get help please, please let me know. I live in Long Island, NY. Thank you
Like
Helpful
HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Connect
Hello. You are among many of us that have similar experiences and live with this daily for years now. As of now, the only thing that doctors seem able to do is treat the symptoms of Long COVID. There is research going on but nothing, that I have found that is definitive for getting rid of this. I just read another research study that they found Paxlovid has no effect on Long COVID. I do know that POTS is one thing that can happen to people that have Long COVID. Some people seem to get some relief from low dose Naltrexone. Salt and sugar can cause symptoms to flare up, like fatigue. I personally believe that Long COVID is an autoimmune illness and causes inflammation in the body (organs as well). I was diagnosed with RA the first year I had this, in 2022. Now, the tests for RA are negative. I had a reactivation of Epstein Barr Virus. Research is showing that many people had reactivation of other viruses. I am glad you got disability. I applied once, was turned down. I have applied again. People will comment here and so many have a lot of experience with what might help and what does not. We are all different in ways, however we all do have this in common. I have found a lot of support here. I do wish that the MAYO CLINIC would offer virtual support groups. I know that there are some on Facebook, but I choose to stay away from social media at this time. Hang in there.
-
Like -
Helpful -
Hug
1 ReactionWell, first of all, I’m sorry you’re suffering. I too, was in your shoes and had awful fatigue, brain fog, stuttering, body tremors, loss of taste/smell (still have that). My general practitioner finally diagnosed me after a year with Long Covid. He didn’t run any tests, just said by my symptoms that I have it. I began doing my own research on how to heal and read that pacing would help the fatigue, so I began walking around my house, then for short periods on my treadmill until I worked up a 3 mile walk. It took a while, but I now am walking 3 miles, 3 times per week and have added light weight training. I also had 7 Stellate Ganglion Block Injections. The 7th one took my body tremors away. I still experience some anxiety, but nowhere near how I was. I would suggest to you, since you know your heart and lungs are in good shape, to start walking a bit every day and stretch it out every other day or so. It’s the only way you’re going to get better. Much luck to you!
-
Like -
Helpful -
Hug
2 ReactionsSo sorry for what you are experiencing..I just wrote you a long response which disappeared before I sent it!!! Grrr. and I am too low on energy to rewrite it..sorry...but if able I will redo it another time.
-
Like -
Helpful -
Hug
1 Reaction@diverdown1 Thank you for your response. I would advise that you get a lawyer who specializes in social security disability. I did this and they guided me through the process. They are paid a fixed percentage of your "back pay" which is the amount you receive from arrears starting from the day you applied.
Good luck
@lkirnbauer Thank you so much. I tried physical therapy rehabilitation and have tried starting slow and trying to work up my stamina on a treadmill but to no avail, I keep hitting a wall. I later saw that the NIH called it exercise intolerance.
. Thank God I was able to get Social Security Disability.
how'd you get that?And hope it's helping you to get better.
@jackson11966 ' NIH called it exercise intolerance'...is this supposed to be 'pem' syndrome.?
You might try a sports drink mix for energy 20 mins before exercise.Go easy at first.See how ya feel.Talk to your dr FIRST...
Hi, sorry to hear about your situation but I completely understand. I’ve had long covid the last 5 1/2 years and I’ve tried multiple things. One thing I tried that I think might help you is a program called thrive ninety. Check the website Thriveninety .com and learn what’s going on in your body and how to slowly build yourself up and pace yourself.
Everyone’s long Covid journey is different depending on what Covid reactivated or affected in your body. In my case, covid reactivated Epstein-Barr virus (mono). I’ve learned how to manage and pace my activities /energy so that I can function, not like I used to, but still enjoy life. Hope this program helps you.
Here is a very interesting and encouraging article about Long Covid fatigue and Creatine.
I have just started taking 2.5 g and plan on increasing to 5g.
Like all of the other things I have tried, Dr. say try for 3 months, if not improving get off it . Time will tell if Creatine works.
RSSN_22_2517278 (RSSN_22_2517278.pdf)
I do think creatine helps with brain fog/cognition.