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

Thank you for sharing, your story is much like mine.
I have tried a busload of natural supplements, Plaxovid, kratom etc. For a couple years I was stuck on my couch and eating high sugar and fat junk food for a spell. Five weeks ago I had foot surgery and before my surgery I decided to do a few exercises, hand weights and the like in order to expediate healing. Well, my surgery was sooo intense and I was intubated and on a lot of narcotics. A week or so later my body felt like I was healing from long COVID. Yes, there have been a few days of minor fatigue and I sleep in at times, as well.
All this to say.... keep on keeping on. I am careful to eat clean, take vitamins C, D, biotin and B. I do my morning exercises and work hard on maintaining a routine.
Perhaps you can clean some info from my experience.
My thoughts and prayers are with you.

I am six years into my long Covid journey and have improved about 50%. I spent the first year and a half bedbound, becoming breathless just walking to the toilet. For me, long Covid affected my autonomic nervous system so my blood pressure, pulse, ability to breathe, sweating, body temperature control, and more was all affected. It also dried up all oil production on my skin, so I have tremendous breakouts and have to constantly use lotion to keep my skin moist. I originally had tremendous post exertion malaise that would affect me for two or three days after exercise and initially , I could only do one thing a day if that. Shower or bathing was also a real problem for me so even bathing once a week became a challenge.The inflammation also caused ongoing pain in all of my joints, and the neuro inflammation made it very difficult to think depending on the situation I was in and how tired I was.

I have been on low-Dose naltrexone for about nine months now and it has really changed my life. I can now walk about 7/10 of a mile every day without crashing, I can function until about 1 o’clock in the afternoon without napping, and I can get up about 4 o’clock and make dinner and stay up until about seven without having to go to bed. I can now shower without being exhausted for the rest of the day, which is really a blessing. This has at least given me a little bit of my life back. It is the only thing I have found that has been able to take some of the pain away from the inflammation and seems to be balancing my immune system again and helping me get a little bit of control back with my autonomic nervous system. I still wake up overheated almost every night and once I get cooled down, we’ll freeze for another hour until I can get back to sleep. But I am sleeping and I am recovering and I feel I’m getting better almost every day as long as I significantly pace myself and don’t try to do more than I’m capable of doing. I do hope things will improve for you as well.

Hi there! I had the exact same symptoms but add dizziness, vertigo, sob, head fullness sensation, tinnitus and crashes with internal tremor and waking up with horrible tremors. I also experienced dry mouth, and rashes that would come and go with face flushing. So for me I had never had Covid but I had the vaccine and 4 days later all these symptoms came out of nowhere. I was 50 at the time. I went from running 10 + km training for a half marathon to barely be able to walk across the street without racing heart and sob and dizziness constantly. After a year of this I was dx with MECFS. The dx didn’t explain the rashes and flushing. I kept pushing for more answers and more specialists all while mostly bedridden and constant PEM. Couldn’t read without crashing, couldn’t concentrate or focus and originally had difficulty even talking normally. Would forget mid sentence and feel confused. So:
Get your ANA checked
Check for autoimmune disease
I was eventually dx with Oist vaccine syndrome, Lupus SLE, MCAS and POTS. What you’re describing sounds like POTS and Dysautinomia. Look this up….the SOB and heart palpitations tachycardia. I think it’s a cluster of symptoms that Covid triggers as well as the vaccine. Your immune system goes crazy and becomes dysfunctional and that can lead into other diseases. Keep pushing for more answers. Write your symptoms down and see if long COVID fits all your symptoms. Pacing is the biggest thing and try to make sure your mental health stays stable. This is an overwhelming disease especially when it comes out of nowhere and the medical community doesn’t have a treatment for it except to say pace. All the best to you and keep watching YouTube videos to learn and understand what’s happening in your body.

@jackson11966 I take a sport drink before treadmilling.20 minutes I wait,then go for it.Six Star is the powder I take.Full of amino acids which help cells do what they're designed to do.Maybe ask your dr about it.extra energy to get past the wall.

I’m so sorry you’re dealing with this awful and baffling condition. I too was sick with the first wave in March, 2020 (in NYC) and have had a roller coaster of symptoms, tests and mental health struggles as a result. I think it’s important to recognize that grief for your former self is normal and necessary. I have a therapist who specializes in ptsd, grief and chronic illness and it has helped me more than I could ever describe.
Since you’re on Long Island-Mount Sinai has an EXCELLENT clinic devoted to Long Covid and other similar illnesses and I’d highly recommend making the trip and seeking care from them. The doctor in charge, David Putrino, is involved in a lot of clinical trials and research, so they have all the up to date theories and info. I left the city (mostly because of LC) for an easier lifestyle. Currently in the process (four years in after some mishandling of applications in BK) of appealing a disability denial.
I hope you find some help and some peace. Your wife sounds like an angel-I’m glad you have her in your life.
In solidarity 🙂

First off, I’m sorry you’re suffering. I have had symptoms of Long Covid for almost 4 years now. Most have settled down, but I still don’t have my taste or smell. I had all the things you mentioned, fatigue, not being able to shower too long or I felt faint, stuttering, brain fog, body tremors. I had them all! To help me with fatigue, I started walking in my house, 5 minutes one day, then 10 and so on until now I can walk 3 miles 3 x’s per week. One of the first things I tried was acupuncture. I had about 20 appointments with the acupuncturist and they didn’t really do too much for me. I then approached the Stellate Ganglion Block Injections and read up on them. I decided I needed to try those to help with body tremors as I could hardly walk with both feet on the ground I was so jumpy! I had 7 SGB Injections over a period of time, every 3 to 4 months or so and the 7th one finally took my body tremors away to where I hardly notice them at all anymore. Over the next months and years, other symptoms dissipated and all that’s left now is to get my taste and smell back and try not to overdo things that tire me out. I also have cut out eating gluten, dairy, soy, sugar and seed oils as they are inflammatory foods. It’s overwhelming, but if you take it step by step, it won’t be so overwhelming. One thing and one day at a time…wishing you all the best.

@lkirnbauer Thank you for your reply. Im seeing a new Doctor this week to start over and see if they can find an answer.

@vostie Thank you so much! Im going to look into naltrexone. Hopefully it will give me some relief from this exhaustion

@tls5alex Thank yiu so much! I. Definitely going to have my new Doctor test me for those conditions

@jnatalo Thank you for your reply. I originally went to Mt. Sinai in the city but I don't think they have a post covid program.

Do you remember the empty streets during the pandemic. It was surreal, like something from a movie.