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

@jackson11966
Oh yes-very vividly. It was incredibly surreal. Inside a citi bike through an empty Times Square that April.

They do have a post Covid clinic but it’s called something else now. If you look up the doctors info it’ll come up 🙂

@lkirnbauer
Hi, interesting to hear of your experience with SGB’s
What type of provider helped to get those in place for you?
I have 4 years of Long Covid symptoms and diagnosis with multiple systems affected
Now have autoimmune Sjogren's Disease, neuromuscular damage, GI dysfunction and dysbiosis, likely dysautonomia and trying to obtain referral for MCAS specialist
My symptoms have become worse over time, despite pacing, walking 10-12 miles/week at a walking pace and seeing a multitude of doctors, many who are content to throw their hands up and say
“we don’t treat Long Covid” as to absolve them from care!
So much for having complex health issues that the medical world will help you with!
My only improvement came 6 months ago when I began with an Integrative Medical provider and was recommended high grade, third party tested Curcumin Supplement
1,000-1,500mg/day that has helped with some of the systemic inflammation and mostly with swelling and burning pain that had been in both legs for nearly 3 years
I haven’t come across very many long Covid suffers who have improved so any word of some improvement in fellow on Covid people is encouraging
Wish you continued improve improvement and better days

@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

@diverdown1 Not understanding...isn't this a Mayo Clinic virtual support group? Please explain.

We acknowledge that science/medicine doesn't have all the answers. We also agree that depending on our individual physiological makeup, health history, strengths, and weaknesses, we each react to Covid differently, though there are commonalities, too. That said, I believe we each must keep searching, researching, trying, and never giving up. So long as they're not overtly dangerous, try different approaches. Diet, sleep, supplements, pacing, meditation, breathing exercises, gentle exercises...the works. Maybe not all at once but maybe focus on one area at a time, sequentially. See what works, what doesn't. I keep these two lists on my kitchen bulletin board as reminders. The goals: reducing inflammation and boosting immunity. Lots of great info on both topics all over the web. Keep hope alive!!!

@shashig Yes, it is. I am talking about a ZOOM or Google meet group where we can actually have conversations without just typing.

@tiredoflc I’m sorry you’re suffering with this dreadful disease. As I mentioned above, I had 7 Stellate Ganglion Block Injections over a period of time (every 3 to 4 months). I had them done at Northwestern Chicago, in their Pain Management Clinic. They are guided injections through an ultrasound so they can see exactly where they’re injecting. I tolerated them well, no real pain, just a little pinch like a shot. My body finally stopped tremoring after I had the 7th one. I don’t know if it will help you, but my insurance covered these procedures and I’m on Medicare/AARP. Could be worth a try as I know what it’s like to want to feel normal again. Also, what helped me a lot was eliminating gluten, dairy, soy, sugar and seed oils. They are inflammatory and will cause inflammation in your body. Also, eating snacks that are in a bag or a box have so many ingredients in them, they are sure to cause inflammation. Try eating clean, nothing from a box or bag, fresh foods that God created. I know it sounds strange, but clean eating has gotten me this far. You’ll also start to feel better by eating clean. Try to stick to this way of eating. I wish you all the best!

jackson11966 @jackson11966

I have learned that COVID, Long Covid and ME/CFS* share very similar symptoms.

I posted a write up on Covid, Long Covid and ME/CFS at the following link
https://connect.mayoclinic.org/comment/1662133/
I started following Dr Akiko Iwasaki Yale
Akiko Iwasaki: What Have We Learned About Long COVID?

Diagnosis is clinical, requiring symptoms to persist for at least six months, and typically involves excluding other medical conditions. The hallmark symptom is PEM, a debilitating "crash" that can occur hours or days after activity.

I have used several of their research papers to educate my doctors.

Jarred Younger recently mentioned the "Community Symposium on the Molecular Basis of ME/CFS Confirmation" (last friday 9/11/2026 10am to 6pm) which I attended - very fascinating. The research papers and Symposium recordings are scheduled to be release in a couple of weeks.

It has been a journey for me, but I keep finding hope.
🍀

I’m not getting very far, but at least my general practitioner and my psychiatrist believe me and are keep on trying.

I understand!!