Anyone with LC 4 years

Oh @traceyf. So sorry you have gone through all that with such reactions or lack of what you need. I too am on year 4 and like so many here have similar experiences and so many show improvement with the right care approach for them! So dont know your healthcare system or State/County services, possible suggestions that are longer dealing with the challenges list.🙃 -conference call your county with your aid, justifying your needs, sharing you cannot type/write/….as brings on debilitating symptoms so they will do whats needed over phone and document themselves in system to prevent possible brain fog errors etc on your part. Let them know your extreme challenges, even send screenshot your comment here, so they can research and assign all help possible.
Physical therapist should be able to help you with laying, seated, standing in corner movements that will gently and slowly build up muscle without crashing/further pain🤞. More importantly they are finding not allowing yourself to even feel effects of doing something is critical to healing. Basically the battery theory where if you use up the energy its just gone. I hope this is not too strong, fire your mental health provider and find the right fit thru those other resources. This situation is new and beyond challenging so a trauma level provider or one who has personally had this level of post covid should be provided. A referral through your healthcare systems post covid or enhanced/specialized care management depts, county should be able to help. Know the key word “should” so if you/your aid is not getting favorable result right away, suggest ask for manager/patient advocate/social worker//grievance dept. to express your needs. The system is overwhelmed/ill informed so weekly follow up with the persons name, case#, expected response, most helpful to have logged even in phone as voice recording. With the right providers help of realistic expectations, like unpacking one item out of a box/washing one dish/doing one exercise rep a day for week one, then 2 week 2 and so on, without bringing on symptoms. to me is the hardest part of recovery. It feels so good to be able to do something but then overdoing without knowing it with your bodies many reactions days/weeks later sabotages any healing🙃 This is where the right mental health and physical therapy provider will truly help you to find/do things you enjoy! Also food is critical for right energy and they are finding new food intolerances, allergies, histamine reactions that compound during day and release middle of night so hopefully a qualified nutrition specialist through post covid clinic referral to assure they are trained in these new challenges. Also, a sleep study to monitor your bodies vitals and show any issues needing attention like my central apnea during day in addition to sleep apnea brought on by covid and the prescribed cpap helps replenish lacking oxygen for cellular level healing. Btw took me 2 hrs to do this which is the brutally honest part so others will truly understand. We are all here for you and so much joy, love,, and contentment to come with quickest healing possible🌈

So very sorry to hear of your struggles.
You are in my prayers.
Please look up Dr Ardis.
I am just starting but feeling positive ✨️
Hugs prayers and love going out your way ❤️

Yes, I wish I could remember for how long ?big part of it was memory loss substantial it’s so hard for me to remember
Before photographic memory, my own business successful now I can barely remember what happened last month or 5 to 10 years ago? Also I was very agitated with everybody And I mean everybody I chewed them out even my son in front of his fiancé really bad where he wouldn’t speak to me for close to a year from there. Agitation has subsided over the years but the following.
AFIB smelling tasting Walking doing things. I would feel robotic thank God I have the support of my wife. She walks with me and that helps I wasn’t able to go to the store which was five minutes away by myself she would have to come with me. It’s like it takes different angles. When able to recover from one it, hits others mind my memory, my taste, my thoughts, but what I notice for me is if I stay away from coffee sugar and just try to do a little bit every day it has been getting better. I’m 60 years plus and what bothers me is that the medical field is denying i’ve been told from different doctors basically shut up / live with it / You need a psychiatrist / We don’t know. I believe they’re too focused on denying so they won’t be overwhelmed
Because they don’t have a cure LC
four years ago they told the whole country that everybody needs to wear a mask and stay 6 feet apart in 60 years plus I never had to wear a mask for the flu fever or any other virus. they know what happened
What really helps if they would make support group so we wouldn’t feel so alone
PS this would originally take me five minutes now it has taken me over 40 minutes to respond, but keep the faith up.

Our stories are all too familiar. Nothing in my very active, creative, intellectually stimulating life is the same. As an ER nurse I was in the first of the front line workers-the first provider to encounter Covid patients. The first covid admission to my hospital was my patient-December 2019. I made it until November 2020 before I got it from being within 1 foot from continuous exposures for 12 hours. Only 1 month before vaccines came out.
I was the first "Long Covid" patient my doctor encountered, was in the first pulmonary, Physical, Occupational, Speech, Support Group therapy groups that were developed by my hospital system. I "look perfectly fine", my difficulties are "invisible'': No one can see the loss of balance when I walk and turn my head, the incapacitating-painful-overwhelming exhaustion because I'm not able to get off the couch let alone go anywhere when I feel that way, word finding and memory loss, if I sit still I can breath, my heart rate reaches 170 walking 10 feet, on and on and on.
It took 2.5-3 years to understand where my mental and physical limits are and then how to plan around them. I know I'm good for maybe the first 5-6 hours of the day, but only 1 hour at a time then resting. I lost my 40yr. career which I loved-I'm not capable of being on my feet and remember complicated and vital information, multitasking-forget it.
I went to covid support groups for about a year and it was so helpful. Now I see a therapist and my core issue is grief/loss-I lost everything that used to be my life, every adjective I could have described myself as. Depression is real, so is fear of the future because it is nothing like what I thought it would be. It took 10 days to recover from Christmas!
I continue on by pacing, pacing, pacing myself. Only one appointment or activity a day. Period. I just 'X' out two days a week to be very low key at home to recover from the other days. I plan down days before and after a big event to manage my energy. I know that lots of water, electrolyte replacement drinks, a little bland food helps the crash-does not eliminate them but sometimes reduces the intensity and duration. When I start to feel better the next day I need to still stay down and quiet and the second day I can usually go back to this new life-but very gently. That roller coaster of feel good-think I can do everything and make up for lost time-then crash again is horrific!
Lastly, I talk to others with sudden debilitating health events and their struggle/success in living life as a whole different person-people who have had strokes, severe car/motorcycle accidents, trauma, cancer. I found my sister in law understood that energy problem as the same as going through surgery and chemo.
This forum, talking to others who are in the same situation is a huge help.
Good luck to you

I feel so bad for you and I can’t even imagine how you’re coping. I too have “Long Covid”, whatever the F___k that is! I lost my taste and smell in December of 2022 and still don’t have it back. I also have Hashimoto’s and Hypothyrhodism for which I take Synthroid for. To deal with my Hashimoto’s, I have given up eating Gluten, Dairy and Soy and I feel much better and have lost some weight. Find a good Endocrinologist to look after your Hashimoto’s and you may possibly have a Thyroid problem as well. Have some labs drawn for that and hopefully you will have answers. Good luck!

I too have had Long COVID for four years...I have good days and bad days now. Still cannot exercise much but it has vastly improved from hardly being able to walk to the kitchen to being able to walk a couple blocks or even half a mile. I still have to ration my energy so on doc visit days or hair washing day, I take it quite easy. Still have unmanageable inflammation even on Celebrex that can make it hard to walk when I have a flare in my symptoms. Still vastly overweight from years of inactivity, blood O2 drops, pulse spikes, palpitations, shortness of breath, painful skin rashes and food allergies. But I am being positive that I will beat this disease...it will not beat me!!!

I am three years in and discouraged like everyone else. I have been to all kinds of doctors and therapists. Nobody has helped me. My issues are blurry vision, distorted hearing with head pressure, tinnitus and hyperacusis, plus no energy,
My life is basically over. I’m alive but not living. I’m offered vitamins to fight this thing. It just gets worse. I want to be optimistic that I will recover, but I only get worse.

4 years in here also. Thank God it hit me right after I retired and eligible for social security and Medicare. Thank God for tolerant husband. Thank God for a PCP who herself had severe Long Covid ! Hardest thing for me is simply self-acceptance. Two months of Physical Therapy early on helped tremendously. Like @rinadbq above I must limit myself to only one activity or appointment per day. I probably got more help from reading about treatment of Mast Cell Activation Syndrome than anything written about Long Covid. I can walk 4 blocks. Can drive for maximum of 30 minutes and no freeways. But I can cook most evenings, resting every 5-10 minutes. I can paint sitting down. I can text friends but can’t process audio input only so no phone calls. I can read a few paragraphs at a time. Oddly enough, when self-acceptance kicks in, life is good!

I’m 40 years old with a full time job, husband, 7 year old boy and dog. Prior to having COVID in 2021- I was highly productive, a healthy eater, consistently active, and felt truly connected to my family, friends, and community. We’re now in 2025 and my life has completely changed. I wake up every morning achy and exhausted, despite following a consistent sleep schedule. My lack of taste and smell along with the fatigue makes it impossible to provide myself with the healing food I need. My husband is incredible and takes a lot off my plate which is a blessing and a source of guilt for me. I wish I could be the active and engaged mom, wife, daughter, co-worker I was. Right now I’m focused on pacing myself, not over scheduling, taking work off when I can’t get out of bed and leaning on the lifestyle strategies I know support healing. With all that said, this invisible illness has turned my life upside down and substantially impacted my health, happiness and quality of life. Reading these posts break my heart but also help me feel like I’m less alone in this. Sending lots of love and encouragement to everyone reading this.

4 years, and counting, LC since onset 9/11/2020...

My “Bag-O-Symptoms, as I have come to describe them:

“Every day is a new day. It’s like drawing the lottery out of my Bag-o-Symptoms to see which will ail me and to what degree. They all just wax and wane throughout my days.” (Kind of along the lines of Forest Gump’s Box of Chocolates)

-Initial Symptom Onset 9/11/2020 (after asymptomatic acute COVID infection.

-Chest Pressure: Elephant on my chest

-Heart Racing/Palpitations: Jack LaLanne is inside my chest doing calisthenics

-Cognitive Issues: Getting lost in - trying to navigate through - the Brain Fog Forest (At about a month in - early 10/2020 - before I knew “Brain Fog” was a thing, my journal entry described … “Brain is in a fog - very hard to focus.”
[Entry in late 10/2020:
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.]

-“Crushing” Fatigue - must sit or lie down for a “Pass Out Nap”

-SOB: Feels like my lungs are wrapped in cheese cloth

-Chest Pain: Radiating gripping pain

-Nausea, followed by Full Body Flush and Heart Rate Spike (as high as 200+) with no apparent trigger (often while sitting and/or little to no exertion) … I call “Episodes”

I have learned to appreciate others whose care and concern for me is amazing. (This from someone whose catchphrase has always been, “I can do it myself.” Well, I can’t. 🤔)

Besides listening to and responding to my body on a minute-by-minute basis, I really have not yet found what helps. I've adapted and discovered what accommodates me in my current limitations. But, I continue to pursue treatment; take care of me; am resting in the arms and love of God, where all fear/desperation has been utterly cast out.

After the first several weeks of WTH???, ER visits, doctor visits with no POSITIVE COVID tests and all diagnostics coming back within NORMAL range, my fears of LC being terminal were abated as I instead ran to my trusted refuge in time of trouble.

Yes, everyday is a new day with any range and severity of symptoms, but I experience absolutely no fear as long as I rest in the arms of God’s perfect love which promises to cast out all fear. So far, so good on that note! God is faithful.

Now 63 years old, with the assistance of an attorney with a track history of victory in LC SSDI (Federal Disability) claims, I filed for disability and was approved in less than 5 months.

Blessings to all!