Post COVID for 21 months now and still declining

My husband got covid dec 2020. Home for 8 days, the 02 dropped dramatically. Had to call an ambulance. Hospitalized for a week. Came home and was pretty good for a couple weeks, then he started showing an array of symptoms. Muscle/ joint pain, neuropathy, daily fevers, flushing, chest pains, major bp problems, sweating at random, shortness of breath, balance issues, vision decline, significant cognitive decline, dizziness, shooting pains from head to toe, and more im sure I'm forgetting. Im disabled, and providing care has been exhausting, but am not complaining. Tomorrow is our 27 anniversary. He's the love of my life. Its killing me to see him like this. It seems to be getting worse. We kept waiting to file disability because he kept thinking he would get better, but we did, it was denied, filed again w attorney, and itll take about 6 months to get an approval or denial. We are about to lose everything. He worked his whole life so hard, 10 hr work days, helped anyone in need, devout Christian man, fished, and just lived life. He's changed so much. He's depressed in a way that is scary. I am at my end with trying to find answers er s and help. Where do we turn? How do we get him better? I can't believe what this has done to him. So sorry for long post, I'm just completely overwhelmed. Prayers and love to all of you who have experienced problems from covid or know someone who is.

I understand exactly what you talking about Dr Munipalli know exactly what your going through. Trust me. She knows what to assess and how to help. She can do an FaceTime visit. I cried when I met her.

Everything Mayo did was holistic they did not prescribe anything they actually eliminated meds and focus on helping me function. Pushing and crashing is usually what it’s like. You push it creates symptoms or worsening them. Then you crash it leads to deconditioning. The snowball keeps going and going. Dr Sletten help me learn how to minimize symptoms and ultimately regain stable vision.

Central Sensitization is where the central and peripheral nervous system are sending mixed messages the problem is literally in your brain. Not your mind. The mixed message creates symptoms that send you to one professional after another. Sometime the testing can make everything worse.

Why don't Doctors know this so they can deal with it???

It’s not commonly know and I had to educate my physicians. I’m a nurse I know how to navigate the system and once I couldn’t get an answer from my specialist. I self referred myself to Mayo and Dr Munipalli referred me to Dr Sletten. I’m just dropping some knowledge it’s up to you to pick up the bread crumbs. Dr Sletten is the leader in symptom management I really made my own way and it took 20 months to get in a better place. He is one of a few drs in the US probably world that specialize in it. I was presented to the Dr’s at AVIV by an ER physician. You have to become and expert in your own illness. Have hope and be well

Hi. I research + apply my own care plan to whatever I'm dealing with. This is MY OWN choice + am speaking only for myself.
For the 1st time in my healthy lifestyle. I've added these supplements. This is based on my research and most important, selection of credible manufacturers. I've added reishi mushroom supplement for relaxation +sleep enhancement at night. I've added Lion's Mane mushroom supplement for neural connection enhancement and energy. I've added curcumin in nanotech form for pain reduction and energy. I introduced each one individually. I take Taurine now too for brain performance. I've had excellent results from these. I was taking Ibuprofen around the clock for a year. I stopped taking it totally the 2nd Day I began the Curcumin bc I didn't have pain (hips, low back, etc) anymore. The mushroom supplements have restore energy which has enabled me to begin to rebuild lost muscle mass (I take protein supplements w/ it.)
Taurine seems to have improved my reflexes+coordination and the total package of ALL the products I'm taking ( listed elsewhere here) often gives me a sense of well being and what feels normal again.
I have a background that allows me to be discerning in my research and self care. I've followed publications on healthy and unhealthy living my whole life. So I feel confident in my own choices for my own self health care beyond the traditional medical care, which I also participate in. If I had the money, I'd be going for acupuncture, as well.
Take my input as something to know about as something that worked for me. While a diagnosis may be alike among the group, our individual overall medical status is certainly vastly different. Always remember that what is helpful for one person may be detrimental to another.
However, I sympathize with how the traditional medical system offers you nothing but frustration and lost time, as you describe. That's why I post my own care plan. To expand the concept of "alternative medicine." But be clearly advised it's an unregulated area with much fraud in it. There are educated practitioners in this field who can help navigate, if you can't discern. But I've gone from not being able to get out of bed except to use the bathroom+ eat something that didn't require cooking or energy (6+ months like this) with constant body pain to doing simple vegetable container gardening and having 85% improved cognitive function - after my double certified doctor declared after all testing " Nothing will get better on it's own, you are getting worst - your cognitive impairment could potentially be long term- and the bottom line is- there's nothing we can do for you."
That's what motivated me to help myself non- traditionally. After just 10 weeks I went back to him to show him he was wrong.
I still have limited energy reserve, some memory issues etc. But I'm able to do the basics of living and have a sense of well being. I'm going in the right direction.
I pray you find alternatives that will be appropriate and successful for you. There's another entire realm of options. Keep hope alive. If one door closes, remember there are other doors. Proceed with wisdom.

Good job and good for you (: I was diagnose with microscopic colitis that lasted three years. I am 7'5" tall and only weighed 107 lbs. due to the horrible pain and unpredictability following eating. Doctors said they didn't know how to cure it, that it usually went away on it's own. It didn't. Like you, I decided to take charge of my wellness. I cut out dairy, coffee and alcohol and added a selection of vitamins. I got on a 20 year old road bike that was in the garage. It is now 10+ years later, I ride a slick Specialized road bike about 60 miles per week weather permitting. No more colitis, am enjoying good health. I am 61 years old.

I'm so happy for you. Thank you for sharing your story. So many people truly need seeds of hope planted in them. Discouragement is a terrible burden when dealing with a chronic unresolved health problem. Hope is such a powerful force.