Do other long haulers suffer with brain changes? Seen any improvement?

Slightly off subject or perhaps not. I have long post Chronic Fatigue Syndrome. And I mean very long. Forty-years. The symptoms are amazingly similar
to post-Covid symptoms. No one pays any attention to us. I understand what post Covid has done to your lives. But why doesn't Mayo Connect, which is a wonderful site, or any other place of note pay attention to us. Also, it occurs to me that many Chronic Fatigue or post Chronic Fatigue people have
very high Epstein-Barr titers and/or chronic herpes disease. These diseases cause many of the symptoms that that challenge PC people. Have any of you been tested for these diseases? True, there are all sorts of post viral syndromes but the Covid and the Chromic Fatigue are too close for comfort. At least mine. Wish someone would pay more attention.

Hello. I was sick with Covid in 12/2020 for 1 month. I returned to work 3 half days a week and progressed to 30hrs a week. I had long hauler shortness of breath, episodes of tachycardia, insomnia and brain fog. I still wear oxygen at bedtime, take a prescription sleep aid and continue with brain fog. In November I had a new wave of brain fog and anxiousness with episodes that made me multi-task. I resigned from my job but they didn't "accept" my request and said they would reduce my hrs to 24/week and limit my duties so I could focus on a few areas. I so appreciate my employers working to keep me at work, but I decided to retire early at age 61. I am a nurse and feel that the services I provide are hindered by too many long hauler effects. I also had two sisters pass from cancer within 6 weeks of each other. This made me look at my mortality and life goals. I will officially be retired at the end of 3/2022. LIfe is too short and I plan to focus on improving my brain health, diet, physical exercise, and pursuing income options that allow me to be creative, work at my own pace, and I can still feel that I'm contributing to our household income and "job" satisfaction. It is hard to explain to others the mental changes that you experience, because they too say they are experiencing forgetfulness, etc. But, this is different because, for me, there was a distinct change and intensification after Covid illness. I too had been experiencing some of these changes, but it is different, now. At first, I thought Covid put me into early Alzheimer's, but those things I couldn't immediately recall would pop into my head shortly, when I wasn't expecting it. It was as if the thought signals were lost and then the synapses connected and I found the answer. With Alzheimer's the thought is lost and not found. These after-effects do bother me but then I find a way to combat them with the hope of getting off the oxygen, sleep aid, etc. I have found a sight to help exercise my brain, Luminosityom, and now that I will stop working I plan to read much more for pleasure. I hope this was helpful. - Kim

Thank you for sharing. It must be hard to be suddenly unable to multitask after a lifetime of handling complex situations! Please continue to share your progress. I totally agree with your decision to retire and enjoy life - I did so at 57 because I had a couple of fatigue-inducing conditions. I have never regretted it, and had such an improved quality of life.
Sue

I very much identify with your post. I am/was a ER RN, sick a month before you. In April 2021 I tried returning to work in a vaccine clinic, 4 hr shifts, 4 days a week. The effort it took to remember to cover just 5 things before giving the shot was overwhelming, I needed a sticky note for reference, and still had difficulty remembering to ask about allergies-something that is nursing school basic. In addition to the overwhelming intractable exhaustion, I was terribly afraid of making an error in such a simple task as giving a shot as compared to ER critical/life saving/trauma nursing where every second mattered and there was no room for second guessing. I lasted 5 shifts and haven't worked since.
I too thought I had Alzheimers or a stroke when I couldn't figure out how to release my seatbelt; emergent cardioversion or rapid sequence intubation was out of the question. I wouldn't want me for a nurse.
Despite multiple Dr reports, workmans comp concluded there was nothing wrong with me & stopped medical coverage, then my hospital 'separated' me from employment because of the same Dr reports. Also at 61, I am living off retirement savings with over 4 times my previous expense for COBRA. The world has changed since covid, but insurance/workmans comp/job protection/corporate policy has not caught up with the impact of the pandemic.
In the meantime I have PT to work on endurance and Speech Therapy & OT for pacing and memory/brain fog. I work puzzles daily for my 'brain work out'-Sudoku. Word Cookies, crossword, block puzzle, free flow, Visuospatial games and, OMG at 61?, senior puzzles. Per Speech Therapy, reading is good too.
Message me privately if you would like to keep in touch. Contact with other health professionals is very helpful to me.
Rina

Not in the Medical field but was an operations supervisor for 34 years. Was the go to for anything about electronic components. Now i leave the water on in the bathroom & forget to flush & many other things. I am just starting a K-9 school workbook program 15 minutes a day 5 days a week. I don’t do anything strenuous, I can’t run, drink, dance, have sex and many other things I did 2 years ago before I got Covid. I had oxygen for 8 months. I use a CPAP if I sleep. I had 1 water pill for High Blood Pressure - now I take 4. 1 - 2x a day. I need drugs to sleep. I’m on antidepressants and anti anxiety pills. I’ve spent the time trying to get back to my normal life. It isn’t that and won’t be that for a very long time if ever. It is very hard to accept but once you do it is a lot better. Quit trying to do so much all it does is make you worse. Keep an eye on your energy bank stop before you think it’s too much. DO NOT PUSH YOUR SELF. Be kind to you. Love & luck. This is the worse thing you will deal with. If you make it you will be stronger.

Hi Sophia. Why not give Yoga a try??? It calms the Body and Mind . And will eventually help you to get over these side effects. Meditation is also very good but that not easy to get into ..but worth a try . All mental states regardless of what they are must be met head on. You run away they will keep coming back at you . Good luck

Thank you for this valuable post. Many people do not know the even OTC vitamins/herbal products and be detrimental.

Hi, I'm new also. I was hospitalized w/ SARS-COVID pnemonia w/hypoxia on April 15 of 2021. I'm almost a yr out and still experiencing extreme fatigue, brain fog, forgetfulness, and I'm having cognitive issues, most recently anxiety & depression. I've had several instant where I've gone to the grocery store or pharmacy, less than 1/2 Mike from my house, and somewhere along my drive I all the sudden have no idea where I am. I know I'm headed home but recognize nothing. I feel panicked for a minute and then something looks familiar and I'm ok again. I struggle with words, and often times completely forget what I'm doing. Don't get me wrong, I had some of this before COVID, when I'd have an extremely long or trying day at work and was working overtime. I don't have to worry about that anymore. My company laid me off once my short term disability was headed towards long term. Honestly, it was probably a blessing in disguise because I have no idea how I'd manage my team, plus my tasks and do trainings. I swear I could sleep 10-12 hrs vacuum, make dinner and I could go back to sleep. I can't stay asleep, ai wake up repeatedly. I've been trying to meditate, and taking a class on neuroplasticity to try to "rewire" my nervous system. I've had an MRI and a sleep study done in the clinic, nothing abnormal. At times I feel a little hopeless. I'm hoping someone can she'd more light on this, and hopefully help those of us that are struggling. I've always felt like I was a strong, smart, capable woman - I definitely feel knocked down. There's days I can't figure out how to even spell the simplest of words.:(

I sympathize with all who responded to my ME/CFS post. One thing of note: All of you have Covid. Where are ME/CFS people? Why isn't there a
special spot for their response. The disease has been thriving officially for about forty years in the USA, yet it's not officially recognized yet? Money for
research is short. There are just a few specialists in the field. I've seen two of them. The situation doesn't make sense. Millions of people have been
affected. They've lost their incomes. Their lives have been drastically altered socially , emotionally and money-wise. Really, no one seems to care. Now, we're being lumped with the Covid people since ME/CFS is classed as a post-viral syndrome. ME/CFS should be studied separately. This would help both the ME/CFS people and the post-Covid people. A sadly missed opportunity is all I can say. After living half my life in a severely altered manner, this is all I can say.

I have tried yoga, stretching with bands, meditating, walking, weird internet exercises. It’s just really only doing a little never getting fatigued or stressed which is just very difficult with the way everything is in the world. Thank you for the advice. I keep trying many things it has gotten minutely better. I revisit thing if they seem to help at all. I don’t have patience so right now I’m working on medications to hope fully take depression and anxiety out of the picture. I got a call from the LTD insurance and got a new case worker so they are reinstating my benefits this week. That has been really stressful, so that is off my plate for 9 months. I keep at it & am at my core a half full person. Just had a really bad week. It gets the best of me sometimes.