Help! Need coping strategies for long Covid diagnosis and symptoms

Posted by karkar @karkar, Nov 17, 2023

Not coping well with long Covid diagnosis and symptoms! My eternally sunny optimistic disposition has plummeted into a dark place. Need coping strategies to emerge from this abyss. Thank you.

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Yes I know exactly what you mean--I am usually the optimistic cheerleader but long covid for just over a year has made me depressed and anxiety. My large group of friends, has diminished due to me not being the motivator but I am not ready to give up-I have four little granddaughters that need their "old" granny self back!

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@fmeronoff

Yes I know exactly what you mean--I am usually the optimistic cheerleader but long covid for just over a year has made me depressed and anxiety. My large group of friends, has diminished due to me not being the motivator but I am not ready to give up-I have four little granddaughters that need their "old" granny self back!

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I know what you mean. In my group of women friends I was the “fun” one. I usually planned our outings, and brought energy to the group. I can no longer do that.
Some have stuck with me, but communication gets scarce when you aren’t “fun” anymore.
Luckily my family has been with me all the way, and that has kept me going. I have three grandchildren that need me back too. I pray I can get there!
I want my old “fun” self back too!!

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Hello,
Have faith.. It will get better. Consider what you have already gone thru and count all your small improvements… You are still amongst the living! You didn’t die! I am celebrating this fact daily. I’ve been dealing with LC for over 2 years now. My body and listening to it is my best teacher. Very very slow improvements but surely I am moving forward. I’m still on anxiety meds: escitalopram 10mg, as well as, on allergy meds, and sleeping meds… and they are helpful. I’m also walking daily, and going to physical therapy twice a week to complete continue regain muscle strength.. all my muscles disappeared after covid hospitalisation of almost 5 months in 2021. I’m still not social, I use instacart and Amazon for shopping, I also don’t go anywhere other than work, I can’t walk up the stairs yet, memory and focus not there as it used to be, oxygen support at night, shortness of breath daily on exertion, even brushing my teeth still get me out of breath… but I am using this time to do what makes me happy. I garden, read, watch lots of movies and keep my life very peaceful, calm and simple. No commitments, no drama, no agenda, no need to respond to anything if I’m not feeling like handling it.. no pressure to see anyone or talk to anyone.. total break from ALL social media and outings, I am not worried about others as I’m only able to handle me at this time and that’s OK... I gave myself permission to only worry about my needs right now and not feel guilty about it. The best thing is that everyone who loves me understands and people don’t bug me as I told everyone very nicely that I just need more time to recover...
I had to learn to give myself permission to rest, take pyjama days whenever needed when I don’t get out from my pyjamas for the entire day. This HELPS a lot.
The one biggest lesson I learned is to focus on recovery and mainly on myself and also having patience with myself... I give myself permission to stop doing whatever I’m doing the moment I start feeling a little tired or anxious… The point is to catch myself at that moment and STOP everything. When I didn’t … I would overdue and then my body will force me to stay in bed for 5 days.. during which I couldn’t do anything… I couldn’t even think.. everything was too much, too hard and I felt extremely tired and overwhelmed. Now, if I overdo it only lasts one day when I can’t do anything.. but now I also already know when I overdid it .. I was feeling so good that it made me feel I’m at my 💯 and didn’t pace myself or didn’t stop on time… I’m not there yet.. My body reminds me of that and then makes me suffer.. I must continue to pace myself. The brain is so awesome and perfectly created and it needs time and opportunity to rewire.. to create a detour around the damaged areas .. I feel blessed and happy I didn’t die… The future is bright and I am greatfull that God made a miracle out of me. 🙏 Have faith!!!

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The problem I am having is trying to explain this at work. There are days that I just can't drive because of the dizziness & lightheadedness, palpitations, breathing problems and depression/anxiety. I would benefit working from home a couple of days a week, but they are not letting me.

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My story is a long one, but I will keep it short. There are many facets (prescriptions, supplements, exercise, dos and donts) to my recovery plan. I contracted LC from my booster in November 2021 and after working my way though many medical professionals in Charleston SC went to the Mayo Clinic in Rochester August 2023. I am recovering and feel better, not 100% but definitely in a better place. I am continuing on my Mayo recovery plan and hope that LC will one day be a memory. Strongly urge you to go to Mayo Clinic or a Clinic with a tested plan to address LC recovery. There are ways to get over LC.

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@kayabbott

I caught covid on a bike tour in March. My LC is mostly gone, but my aerobic exercise is still in bits with rest between. Resistance work, like weights, doesn't seem impacted by LC. Avoiding stress and getting enough rest and sleep is important. LC drains us physically and emotionally, and recoveries tend to be long term and slow. My LC hit after covid (I'm 69 and my previous booster was 6 mo before, but got a high viral load from my biking companion). Consider keeping track of what you eat as well, in case covid resulted in any food intolerances (my celiac was triggered 14 years ago by H1N1). After getting covid, I mostly focused on recovery and fun/stressless stuff this year, instead of forcing myself to be well.

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I have been reading here for about a year but still not real sure how to join a discussion but will try.
Soon after first two vaccines I fell ill and was sent to cardiologist who diagnosed ejection fraction of 30 and heart cath diagnosed congestive heart failure. Have had chronic kidney failure for many years but remain stable until a few months later dropped into in stage and underwent some dialysis. Spent several years going to specialists. Fall 2021 caught covid-19 in spite of two vaccines and a booster. Soon discovered I had some heart arrhythmias and received a pacemaker this past September. It keeps my heart from bradycardia and tachycardia but still feel ill. Tired, out of breath, and my balance is terrible plus temors in my hands...very shaky. Due to balance I have fallen quite a few times the worst to dislocated my knees and another gave me a concussion. I try to go outside and take a walk each day on good days but still can only go a half a mile and I know I am largely deconditioned because I used to hike regularly and that ended with my first two vaccines. I recently turned 69 so I am sure my age factors in but I also know that the symptoms I have absolutely were brought on by covid and that I now have long covid. Not all of my specialist agree however and I am in a small town in Arizona so have very few specialists.
As far as coping I am trying to accept that this is now my life but I am not doing a good job of it. 3 years ago my primary care provider offered me Prozac and I have been taking that. A few months ago I tried to reduce the number of medications I take and stopped Prozac... But I now believe I need to go back on it. My most recent specialist was a neurologist who wanted to put me on migraine medicine but I certainly do not want to add more medicines she is also one who does not believe in or treat long covid. My next plan is to go to a different neurologist in the next town which is about 30 minutes away. I would like to be checked for possible Parkinson's because of my tremor and unbalanced gait. Except for doctor appointments and the daily attempt to walk in the neighborhood, I mostly stay at home. My husband now does all the cooking and goes walking with me. He also does all the grocery shopping because I am unable to be upright for very long. I am trying to cope and starting to believe this is my new normal.
Debbie

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I had it 2 years, then got quickly better the got a booster and it immediately came back then a month or two later I tested positive second times. LC got worse.

Now 1/2 year after positive LC is waning again.

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@sirrahbed

I have been reading here for about a year but still not real sure how to join a discussion but will try.
Soon after first two vaccines I fell ill and was sent to cardiologist who diagnosed ejection fraction of 30 and heart cath diagnosed congestive heart failure. Have had chronic kidney failure for many years but remain stable until a few months later dropped into in stage and underwent some dialysis. Spent several years going to specialists. Fall 2021 caught covid-19 in spite of two vaccines and a booster. Soon discovered I had some heart arrhythmias and received a pacemaker this past September. It keeps my heart from bradycardia and tachycardia but still feel ill. Tired, out of breath, and my balance is terrible plus temors in my hands...very shaky. Due to balance I have fallen quite a few times the worst to dislocated my knees and another gave me a concussion. I try to go outside and take a walk each day on good days but still can only go a half a mile and I know I am largely deconditioned because I used to hike regularly and that ended with my first two vaccines. I recently turned 69 so I am sure my age factors in but I also know that the symptoms I have absolutely were brought on by covid and that I now have long covid. Not all of my specialist agree however and I am in a small town in Arizona so have very few specialists.
As far as coping I am trying to accept that this is now my life but I am not doing a good job of it. 3 years ago my primary care provider offered me Prozac and I have been taking that. A few months ago I tried to reduce the number of medications I take and stopped Prozac... But I now believe I need to go back on it. My most recent specialist was a neurologist who wanted to put me on migraine medicine but I certainly do not want to add more medicines she is also one who does not believe in or treat long covid. My next plan is to go to a different neurologist in the next town which is about 30 minutes away. I would like to be checked for possible Parkinson's because of my tremor and unbalanced gait. Except for doctor appointments and the daily attempt to walk in the neighborhood, I mostly stay at home. My husband now does all the cooking and goes walking with me. He also does all the grocery shopping because I am unable to be upright for very long. I am trying to cope and starting to believe this is my new normal.
Debbie

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That is a lot to live with, emotionally and physically. I had some balance problems and neuropathy due to MGUS, but had physical therapy that helped with strength and balance. Covid is evil, and unfortunately not enough is known about long term effects and how to limit them. I hope you have friends that have been there for you in these hard times.

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@kayabbott

That is a lot to live with, emotionally and physically. I had some balance problems and neuropathy due to MGUS, but had physical therapy that helped with strength and balance. Covid is evil, and unfortunately not enough is known about long term effects and how to limit them. I hope you have friends that have been there for you in these hard times.

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Hi Kay and thank you so much for your reply. I had never heard of MGUS so had to Google and read about it.
I do have a few friends/neighbor who are support me as well as my adult daughter. We moved here 3 years ago from Ohio as my husband is retired Air Force.
I never gave much thought or attention to symptoms in my hands but they do tingle and become numb quite often. I thought it was another issue with my age as they are quite arthritic and crooked.
Thank you again so much for your reply.
Debbie

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@sirrahbed

Hi Kay and thank you so much for your reply. I had never heard of MGUS so had to Google and read about it.
I do have a few friends/neighbor who are support me as well as my adult daughter. We moved here 3 years ago from Ohio as my husband is retired Air Force.
I never gave much thought or attention to symptoms in my hands but they do tingle and become numb quite often. I thought it was another issue with my age as they are quite arthritic and crooked.
Thank you again so much for your reply.
Debbie

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Debbie again. I have a friend here who runs a yoga studio and he told me that they work with people who have balance issues so I may look into trying that as well as asking my PCM about possible physical therapy. I had PT shortly after I dislocated my knees and wore braces for a couple of months. I know that Plano walking is probably the best thing for me and I do try to get out once a day even though it is only around the block for a half a mile.
Again thank you so much for your reply. I will continue to learn this forum and keep reading 😊

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