Increasing anger, impatience, grumpiness and brain fog after 2.5 years

I had Covid 11/2020. I have long covid. It has been one thing after another. The fatigue has been the most bothersome. I’ve had shortness of breath with even the smallest exertion since covid but respiratory testing was essentially normal. There was minimal pericardial fluid in CT scan last year. The doctors feel this fatigue and shortness of breath is mainly deconditioning since not being physically active. My pcp gave an albuterol inhaler that does seem to help with physical activity. I also started Provigil, 200 mg, this summer for the fatigue. I wasn’t sure it helped until my prescription ran out and I went without it for 2-3 weeks! It makes a huge difference, for me, in my ability to be able to feel more alert. I’m still having headaches that seem different from my normal migraines. Hopefully my neuro team can give some insight on that. What I continue to struggle with is my spouse and family does not seem to understand and/or believe what is going on with my body. They notice I’m more sleepy, they notice the brain fog because I don’t remember things as well, they see that I do not get house chores done because I need more rest, they can see that I’ve gained weight, I now have a sexless marriage (I guess for a number of reasons), and my whole body hurts after a half day of work or fun. How can I get them to be more empathetic or understanding about this issue? It is as if they think I am making it up. It feels very alienated and adds to my anxiety/depression.
It is all happening to my body, I am obviously living this first hand! I never asked for this and I still have desire to feel better. I was read long that 75% of marriages in divorce when one spouse has a chronic illness. I’m not on disability but I’m also not working either.
Any words of wisdom?

How did the neuropsych evaluation go? Help any? I know you said only 2 years + Covid patients reply but I'm into month 7 and am 74 years old and might not be around for two more years if someone doesn't start treating the ailment. No not treating it but at least start documenting and identifying the ongoing damage. I continually tell my family doctor that I have all the normal symptoms and a few rare like covid tongue and intense pain in my replaced hip. So he finally gave me a referral for an x-ray to my hip, a PT referral and a referral to a neuronal psych. Of course the X-Ray won't show infections (Need MRI) but it did pick up bone deuteriation, so he did a scan for autopoiesis which came back negative - So one would think the next step is an orthopedist and a MRI but not so. I still have my PT referral but with the excruciating pain in my hip, I think I'll wait until the psych cures me.

I do have neurological symptoms like migraines, radiating nerve pains, spinal deuteriation, brain fog and double vision as I assume you do too - I just don't see how a psych can talk me out of them. However, since it took 3 months to get the appointment - I'll try anything. I would have hoped for a real neurologist though.

I just don't understand the run around we are getting. You can't get diagnostic test, most covid treaters won't take walk-ins without a referral and appointments are months out, and family doctors refuse to even supply placebos.
I know there are some promising probiotic studies out there - why not flush the gut since it's been accepted that he covid virus loves that host community and reintroduce new bacteria with new probiotics? We should have data on our past colonoscopies' (They are filmed) why not run another for long covid to see and compare what damage Covid may or may not have done to the intestines?

My concern is the insurance industry (with government help) is prohibiting care due to the volume of patients that have long covid. If they treated it as an illness - the massive volume of care - claims would overwhelm the industry. If this is true, they are trading months - years of my life for a few dollars savings for the insurance industry.

Get yourself in a long Covid treatment center or university program. Once they clearly diagnosed me with Covid and established me in their long Covid programs, insurance covered me seeing the best neurologists in Chicago, some of the best long Covid experts in the country.

How did the neuropsych evaluation go? Help any? I know you said only 2 years + Covid patients reply but I'm into month 7 and am 74 years old and might not be around for two more years if someone doesn't start treating the ailment. No not treating it but at least start documenting and identifying the ongoing damage. I continually tell my family doctor that I have all the normal symptoms and a few rare like covid tongue and intense pain in my replaced hip. So he finally gave me a referral for an x-ray to my hip, a PT referral and a referral to a neuronal psych. Of course the X-Ray won't show infections (Need MRI) but it did pick up bone deuteriation, so he did a scan for autopoiesis which came back negative - So one would think the next step is an orthopedist and a MRI but not so. I still have my PT referral but with the excruciating pain in my hip, I think I'll wait until the psych cures me.

I do have neurological symptoms like migraines, radiating nerve pains, spinal deuteriation, brain fog and double vision as I assume you do too - I just don't see how a psych can talk me out of them. However, since it took 3 months to get the appointment - I'll try anything. I would have hoped for a real neurologist though.

I just don't understand the run around we are getting. You can't get diagnostic test, most covid treaters won't take walk-ins without a referral and appointments are months out, and family doctors refuse to even supply placebos.
I know there are some promising probiotic studies out there - why not flush the gut since it's been accepted that he covid virus loves that host community and reintroduce new bacteria with new probiotics? We should have data on our past colonoscopies' (They are filmed) why not run another for long covid to see and compare what damage Covid may or may not have done to the intestines?

My concern is the insurance industry (with government help) is prohibiting care due to the volume of patients that have long covid. If they treated it as an illness - the massive volume of care - claims would overwhelm the industry. If this is true, they are trading months - years of my life for a few dollars savings for the insurance industry.

Nothing should stop treatment and testing of symptoms that are associated with Long covid. Again, I am not aware of a specific treatment for "long covid" based on a diagnosis of long covid like other diseases. The long covid clinics were suppose to help in the research in that doctors associated with them could share observations and results. But it's not as if they necessarily are the only ones who can treat the symptoms. But yes the concept of having doctors primarily working with those who have chronic symptoms after being infected with covid does make sense.

bunzman You are absolutely correct! Nothing should prevent the investigation of Covid Symptoms at a minimum - but it is happening. There are common - safe treatments to help but they don't even suggest them. In my case, I have two concerning symptoms - an intense burning in my replaced hip and loss of memory/brain fog. It doesn't take a genius to realize the hip can be diagnosed with a MRI- Nuclear scan or better yet a fluid removal from the hip area and a blood sample to see if it's an infection, covid related or the hip is failing? Either or anyway the diagnosis should be made based on my complaint of pain. Not denied on the incompetence of the doctor because he wants to wait and see if it will go away on its own as some symptoms do. That is very clear, unless someone doesn't want to pay the cost of the investigation. The second, memory problems seem to be even more suspicious - are we thinking that he's old and we will write him off to old age and forget about checking that symptom out. Old age discrimination.

In any case, the inappropriate response is wait and see - time will heal it. Us old guys/gals don't have time to spare and a after lifetimes of check-ups, colonoscopies, blood draws to support the physician's practice - the least you can do is look into our complaints and give us the minimal care.

I can't say it helped or hurt. Basically, we baselined my mental capacity yesterday to monitor it going forward. The only problem was as of yesterday I felt 40% dumber than I did when I caught Covid 7 months ago. Definitely better than my primary physician who said "sure the memory problems with your covid probably is less than you are used to, but you are still very smart - wouldn't worry about it". I do he doesn't. I must say my new (Over the Counter) probiotic is very encouraging (VSL#3) is showing great improvements after 1 week. My gastric problems, gas, diarrhea, cramping, acid reflux and Covid Tongue (inflamed taste buds on the tongue) have significantly improved. I must admit I quit eating anything but yogurt and liquid nourishment after lunch so it might be a combination, but I am getting some sleep now. Not one to recommend cures over the internet but since it is an "over the counter" product and seems to be much higher rated by NIH than the brand-named ones - it's worth going online, making your own decision and checking in with your doctor. I was pleasantly surprised when my gastroenterologist finally recommended something specific. Do an internet search with the name of your probiotic with a comma and NIH. Then do one with VSL#3 and you can compare the two. First sign of relief in 7 months on any of the many symptoms.

I'm sorry. Not sure of the connection between the hip and covid, or why burning is not pursued? Again, there exists no specific treatment of long covid based on long covid as a diagnosis. If you re not being treated for the intense burning maybe go to a pain center. The brain fog, etc. is something that a long covid clinic can pursue if it stemmed from covid and is now chronic, but know long haulers who also work with their primary docs.. Not sure what common safe treatments you are referring to? May be time to seek out some new doctors as most would not dismiss your symptoms based on age. Maybe leave the city you live in and someone here can direct you to someone? I wish you you the best of luck.