New here. Have this Post Covid for over 5 years. I need help desperate

Posted by jackson11966 @jackson11966, Aug 31 1:57pm

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

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

diverdown1 | @diverdown1 | Sep 16 8:57am

In reply to @jrg200911 "@jackson11966 Your story could be my story, down to age (just a couple years difference), while..." + (show)

@jrg200911

@jackson11966
Your story could be my story, down to age (just a couple years difference), while I do not currently live there, I was born on Long Island, and I also have a saint for a spouse (husband)...

My multi-symptom onset began, literally overnight, September 11, 2020. 2 ER visits in the first month and plethora of diagnostics thereafter with 99% of results coming back 'normal', with the 'big-bads' ruled out. Breathing Rehab, Cardio-Pulmonary Rehab (twice), Speech Therapy, Hearing and Balance Rehab. To every specialist. Was fortunate to have a dedicated Post COVID Clinic, which only closed its doors January 2026. They were very empathetic to the cause, which was a nice change from most doctors. They offered no cures, of course, but steadfastly worked with me to manage my unique set of symptoms. Also refreshing because they saw me as an individual. I felt kind of lost when the clinic closed. I changed my PCP from a family doc to an internal medicine doc, which was the same department/same hospital heading the clinic.

I was almost giddy to get one clear diagnosis, sad but true. Dx-Postural Orthostatic Hypotension, and later POTS (Postural Orthostatic Tachycardia). The first 3 years, my most debilitating symptoms, though all were, and continue to be, present to one degree or another, were Cardio-Pulmonary. (Elephant-sitting-on-your chest pressure/pain, breathing-through-cheese-cloth shortness of breath, spiking heart rate to as high as 200 with little to zero exertion.) With that, my bag-o-symptoms included severe brain fog, [sometimes crushing] chronic fatigue, constant dizziness and imbalance, post exertional malaise (PEM), anxiety/depression. I finally got an official Post-Acute Sequelae of COVID 19 diagnosis in 2023. That was a day for celebration.

I'm with you on the shower thing, NO SHAME! Taking a shower is mostly my big project of the day when I do. Not too much activity after or I'll surely crash. I many times go longer than a week between showers, because just the thought of doing it is too overwhelming. A spritz bottle of soapy water and a pack of 99.9% water wet wipes lets me do daily wipe downs so I don't offend anyone. I am really glad I never had long-term loss of taste or smell. That would have made things much harder. Next to my husband, my recliner has been my closest companion...

Metopropol was my one miracle drug. It calmed my heart down so much I don't even need my Apple Watch to monitor my heart rate any longer. There are even days my heartrate doesn't go over 100, when in 'the before' I got several high rate alerts per day. The criteria for an alert was a heart rate over 100 for at least 10 minutes. I missed one dose once, and my heartrate was soaring like it had in the early days. I'm definitely keeping that one on board!

In only 5 months, with the assistance of an attorney - I wouldn't attempt that process without an attorney! - I was awarded Federal Disability SSDI in January 2025 for primarily Brain Fog and Dizziness/Imbalance. The Lord is faithful to provide.

I am currently seeking a prior-authorization from Medicare for Stellate Ganglion Block (SGB) treatments. I am hopeful my clearly documented health record with diagnosed LC and being granted SSDI by the same government that manages Medicare, the treatments will be considered 'medically necessary', and I will get 100% coverage. Otherwise, I think I will go ahead with the treatments out-of-pocket. ($1000 for initial treatment/dual injections; $250 per injection thereafter...) There is a decent chance of having good results, and it is one of the only treatments I have yet to pursue.

I do wish the best to you and everyone here for a future of happiness. There is life and joy to be discovered in the 'new normal'.

Just read this article today. We have not been forgotten!

Why Is No One Talking About Long COVID?
https://www.medpagetoday.com/opinion/second-opinions/122902

Jump to this post

@jrg200911 I have applied twice for SSD. The first time I was turned down. I am now waiting again to hear. I am seriously considering getting an attorney. I just graduated with my M.S. in social work from an online program, one of the best and now...I am trying to find a remote position. They are out there, but my state does not have many. I did find a part time (12 hours a week) job and I am jumping on it. I went, yesterday, for a third interview (first two were online) at a place downtown where I live. I felt okay yesterday, however today I woke up with post-exertion malaise, joint pain, LOUD tinnitus and I know it is inflammation from this (expletive) virus. I was surprised, that I was surprised! Does that make sense? 4 years of this b.s. and I am frightened. I have tried so many different things, B12, Vitamin D, supplements, LDN and I take meds every morning. Without them I don't think I could function. I also have the "hate the shower" as well as "don't feel like cooking, doing dishes, laundry..." all the things that I used to do. I believe that this virus has caused depression, isolation, loneliness and some mornings hopelessness. I talk to my Creator and ask for help with the day. I know that EBV was reactivated in me at the beginning of this as the test results that the RA doctor did, showed this. They are finding and I have read a research article that discusses a study that was done on people with LC. They had reactivations of other viruses, such as Epstein Barr. It hurts my heart to read all the comments on here. I have been doing that now for several years and I just feel like we are just waiting...while life just goes on. Sorry to sound so down this morning. I am grateful for many things. I just get to a point, sometimes, where I feel depressed. I am pulling for all of you.

mlamb11 | @mlamb11 | Sep 17 11:01am

Have you tried a PEMF machine? It has helped me so much, even after using it one time. I don't feel completely back to "normal" (because I'm not sure what that is yet) but most of my symptoms are way, way better then where I was. I would HIGHLY recommend it, it is night and day for me. I've been using it for about 2 months now. 1/2 a day, everyday. Pulsed electromagnetic field (PEMF) therapy uses low-frequency electromagnetic waves directed at the body to help relieve pain, reduce inflammation, and support tissue recovery.
I had severe PEM, my muscles were so tired from very little exertion, it would sometimes take me months to recover. I have lung issues, racing heart, my blood pressures "normal" is higher than it has ever been, I generally have a lower heart rate. I would be tired out just from getting dressed and my heart would race just putting my pants on. I am currently on day 3 without using one of my inhalers I had to use every 4 hours before. I haven't gone off the 2nd inhaler yet because it helps with inflammation and I'm not sure where I'm at with that at this point. I met Brian and Todd from BBG Wellness this summer and am so grateful for all of their help, I will never be able to thank them enough, I truly feel so much better! Here is their website with tons of information and Brian is great about guiding you on everything. Check out the website bbg-wellness - I'm not allowed to post the website itself. The machine is pricey but it is worth it 1000 times over! After only using the PEMF for 5 days my husband and I walked 3 miles and I didn't have any PEM and I wasn't completely exhausted. I used to only be able to walk part of a block and be tired out. This is not a sales pitch or anything, I really want to help others going through long covid. I know what it's like and I was depressed and developed anxiety issues because of it and feeling alone. No one believes you unless they have it. It is a real disease, it is not fake. Stay strong and start looking outside of the box for answers, I'm so glad I did!