1. < Post-COVID Recovery & COVID-19

Long Haul Covid Devastation

Posted by williamkelly3370 @williamkelly3370, Jun 9, 2023

Got mild covid in 12/20/20. I'm now worse than ever, 2 1/2 years later. I've been very active all my l'm 69, I can hardly walk 200 ft, and have to lay down for a few hours. I have severe, fatigue, anxiety, depression, taste & smell OK, No apatite and live alone. Wife of 38 yrs. passed in the beginning of this and my doctor says "I just have to get over that!"
My live is gone. I hope and pray they will persist with research for this but, it doesn't look good.
Sorry for my babbling,
Bill.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

jenna | @jennaklo | Jun 10, 2023
In reply to @williamkelly3370 "I would try anything at this stage of the game. Kill me or cure me, Doesn't..." + (show)
@williamkelly3370

I would try anything at this stage of the game. Kill me or cure me, Doesn't really matter if you can't do anything.

Jump to this post

Bill - My prayers and condolences for the loss of your wife. Have you connected with a support group for grieving? As for the post-COVID, I can deeply emphasize and relate. I will share what has been a journey of over a year for me and it's truly one day -- sometimes one hour or a 5 min block of time-- just to keep going! and it's worth it to keep going and keep trying!
in short:
1) for brain fog, loss of processing speed and such - I found the techniques that my Occupational Therapist and Speech Pathologist along with the Brain rehab team helpful. I started with planning my day completely differently since I now (since April 19, 2022) only have 12 hrs of awake time to work with vs. my pre-Covid normal of 20 hrs a day. I practice memory games with a deck of cards, I take notes about everything with a date and time and who i was talking to at the top. I have to take a brain break every 55 minutes (a grand improvement over the every 20 min I started at)
2) for cardiovascular, I use walking on treadmill in addition to walking outside and box breathing as the things that finally have helped me manage. I tried a bunch of other but I'll just share what finally has helped me.
a) walking on treadmill -- at first, I could only do 3 min at level 1 and speed of 2 before my HR would be above 150, my heart felt like it was jumping out of chest and then my OT coach kept saying - do what you can do. I have - day by day, bit by bit.... it's something. Some days are better than others. YOU CAN! start with whatever you can do and then try to do that again, if can get 1 percent more next day, awesome, if not - just do what you can and keep trying.
b) box breathing - this is what the Navy Seals do and it's simply to learn - youtube for a video on it. The book "the Way of the Seal" is where I read it the first time, but now I practice it every morning and then frequently throughout the day to control my breathing, bring down the autonomic nervous system to a 'reset' so that my HR and BP can get back into normal range -- it is either really high or really low and fluctuates randomly - i have tried to see and track patterns and so far, can't tell what starts it - so I have learned to not get worked up that it's 'out of whack' but rather to just 'breathe it back to what it needs to be' as much as possible. Box breathing is in through nose for 4 counts, Hold for 4 counts, Breathe out through nose for 4 counts and then hold for 4 counts. I practice to get this as slow as possible, but in the beginning it was just about doing it and i was too fast and had to learn how to do it better and better. The book Breath taught me about breathing through my nose rather than mouth.
3) GI - I have diarrhea and/or severe constipation with not much normal in between. I had tried a host of meds to try to figure out and watch the patterns and diferent foods - frankly, I stopped all meds now and just accept. I have read alot about "RADICAL ACCEPTANCE" and while tough to do at times, it's what I keep referring back to and say out loud if I have to... We can talk more if you want on this part.
4) overwhelming fatigue - the level of rest i need now is ridiculous to me... and basically the 'old me' is dead. I work with this shell of a body that does NOT work at all the way it did before. It's like post - stroke rehab that I have been doing for the past year. The only thing that has helped me here is planning out my week so that I know what I have to be awake for and what I will need to miss with my family because I will need to be sleeping. For example - if I have work and then a soccer game. I will need to take a nap right after work and not drive to the game, but rather sleep on the way there and then only be awake for the game, then sleep on way home too otherwise I won't be able to do the next day. Sometimes, I just have to skip. Last night for example, I got home from work and then laid down for a 'nap' at 435 pm - I slept all night.... In the beginning, I could only work for 4 hrs a day or some days not at all... I was grateful for the post Covid clinic at Mayo and for my support for restrictions at work for the first several weeks. Now I am cutting into my family and housework time more often than not and I can only do what I can do....
5) Joint pain, headaches and overall muscle spasms, numbness, etc.
This part is unrelenting... I have not had a pain free day since April 19, 2022. The headaches are off the charts. Since I have had spinal menigitis before, it's not quite that bad... but I'd say I'm living at about a 7/8 out of 10 pain as a constant and then it gets to a 9 with sharp knives and spasms that bring me to my knees at times. I am more practiced with box breathing and how to stretch and walk and endure this now, but it's certainly not "better". I can handle it better after over a year. For the joint pain, I spend about 20 minutes stretching in the morning, to 'unlock' my joints and to prevent me from being so stiff and/or not able to move well that I risk falling down as trying to get out of bed. So I do that first round of stretching from my bed. Then I have come to a morning routine that is much better on the days I can do it vs. the days I cannot. Stretching while listening to prayer, then walking, weights at the egym if i make time, sauna for 20 min or longer while journaling and writing out - what i'm grateful for and the plans for the day and a brain dump to clear my head. if i have questions, i write them down and then if it's important, i calendar it to figure out later. The walking is more wonderful when it's outside in nature, yet, to watch my HR and to get full benefit of what I need to track to be sure that I am sticking to my routine and getting 1 percent better - the treadmill is better for that. I have some 'rules' for myself to get the discipline around it - since I basically feel terrible all the time, i cannot wait to feel better to do this and now i have learned that I feel WORSE when I don't do it so I have to do something. It's all that is in my control is whether or not I can try to do my stretching, the exercises, the box breathing... and then everything else is up to God. My telling you this is in deep hope and prayers that you can find what you may be able to do as a one step at a time. I pray that you don't lose hope. When you say kill me or cure me - that scares me! We all care for you even though not met you --> please call 988. They can talk with you and help. You are absolutely NOT better off dead --> you have gifts to share and things to learn and teach in the world yet. My deepest hopes for you as you learn how to grieve fully. I share some to let you know you are not alone. God bless you. You matter. You can find a way. Ask if you have questions -- maybe everyone on this group can figure some things out together! I appreciate the support and readings so far. Thank YOU.

REPLY
1 reply
gford | @gford | Jun 10, 2023
In reply to @williamkelly3370 "I would try anything at this stage of the game. Kill me or cure me, Doesn't..." + (show)
@williamkelly3370

I would try anything at this stage of the game. Kill me or cure me, Doesn't really matter if you can't do anything.

Jump to this post

I’ve only been long Covid for 18 months but just so tired of it and treatments. Peace

REPLY
pdd | @pdd | Jun 10, 2023

I am sorry to hear you are having such a hard time. Do you have a counselor you can process your grief with? Grief can make the physical more difficult. Grief, especially after 38 yrs can take a long time to work through.

REPLY
silverfish0409 | @silverfish0409 | Jun 10, 2023

Go to, easy health 0ptions .com, look up relief for long covid fatigue resetting the vagus nerve ,

REPLY
williamkelly3370 | @williamkelly3370 | Jun 10, 2023
In reply to @jennaklo "Bill - My prayers and condolences for the loss of your wife. Have you connected with..." + (show)
@jennaklo

Bill - My prayers and condolences for the loss of your wife. Have you connected with a support group for grieving? As for the post-COVID, I can deeply emphasize and relate. I will share what has been a journey of over a year for me and it's truly one day -- sometimes one hour or a 5 min block of time-- just to keep going! and it's worth it to keep going and keep trying!
in short:
1) for brain fog, loss of processing speed and such - I found the techniques that my Occupational Therapist and Speech Pathologist along with the Brain rehab team helpful. I started with planning my day completely differently since I now (since April 19, 2022) only have 12 hrs of awake time to work with vs. my pre-Covid normal of 20 hrs a day. I practice memory games with a deck of cards, I take notes about everything with a date and time and who i was talking to at the top. I have to take a brain break every 55 minutes (a grand improvement over the every 20 min I started at)
2) for cardiovascular, I use walking on treadmill in addition to walking outside and box breathing as the things that finally have helped me manage. I tried a bunch of other but I'll just share what finally has helped me.
a) walking on treadmill -- at first, I could only do 3 min at level 1 and speed of 2 before my HR would be above 150, my heart felt like it was jumping out of chest and then my OT coach kept saying - do what you can do. I have - day by day, bit by bit.... it's something. Some days are better than others. YOU CAN! start with whatever you can do and then try to do that again, if can get 1 percent more next day, awesome, if not - just do what you can and keep trying.
b) box breathing - this is what the Navy Seals do and it's simply to learn - youtube for a video on it. The book "the Way of the Seal" is where I read it the first time, but now I practice it every morning and then frequently throughout the day to control my breathing, bring down the autonomic nervous system to a 'reset' so that my HR and BP can get back into normal range -- it is either really high or really low and fluctuates randomly - i have tried to see and track patterns and so far, can't tell what starts it - so I have learned to not get worked up that it's 'out of whack' but rather to just 'breathe it back to what it needs to be' as much as possible. Box breathing is in through nose for 4 counts, Hold for 4 counts, Breathe out through nose for 4 counts and then hold for 4 counts. I practice to get this as slow as possible, but in the beginning it was just about doing it and i was too fast and had to learn how to do it better and better. The book Breath taught me about breathing through my nose rather than mouth.
3) GI - I have diarrhea and/or severe constipation with not much normal in between. I had tried a host of meds to try to figure out and watch the patterns and diferent foods - frankly, I stopped all meds now and just accept. I have read alot about "RADICAL ACCEPTANCE" and while tough to do at times, it's what I keep referring back to and say out loud if I have to... We can talk more if you want on this part.
4) overwhelming fatigue - the level of rest i need now is ridiculous to me... and basically the 'old me' is dead. I work with this shell of a body that does NOT work at all the way it did before. It's like post - stroke rehab that I have been doing for the past year. The only thing that has helped me here is planning out my week so that I know what I have to be awake for and what I will need to miss with my family because I will need to be sleeping. For example - if I have work and then a soccer game. I will need to take a nap right after work and not drive to the game, but rather sleep on the way there and then only be awake for the game, then sleep on way home too otherwise I won't be able to do the next day. Sometimes, I just have to skip. Last night for example, I got home from work and then laid down for a 'nap' at 435 pm - I slept all night.... In the beginning, I could only work for 4 hrs a day or some days not at all... I was grateful for the post Covid clinic at Mayo and for my support for restrictions at work for the first several weeks. Now I am cutting into my family and housework time more often than not and I can only do what I can do....
5) Joint pain, headaches and overall muscle spasms, numbness, etc.
This part is unrelenting... I have not had a pain free day since April 19, 2022. The headaches are off the charts. Since I have had spinal menigitis before, it's not quite that bad... but I'd say I'm living at about a 7/8 out of 10 pain as a constant and then it gets to a 9 with sharp knives and spasms that bring me to my knees at times. I am more practiced with box breathing and how to stretch and walk and endure this now, but it's certainly not "better". I can handle it better after over a year. For the joint pain, I spend about 20 minutes stretching in the morning, to 'unlock' my joints and to prevent me from being so stiff and/or not able to move well that I risk falling down as trying to get out of bed. So I do that first round of stretching from my bed. Then I have come to a morning routine that is much better on the days I can do it vs. the days I cannot. Stretching while listening to prayer, then walking, weights at the egym if i make time, sauna for 20 min or longer while journaling and writing out - what i'm grateful for and the plans for the day and a brain dump to clear my head. if i have questions, i write them down and then if it's important, i calendar it to figure out later. The walking is more wonderful when it's outside in nature, yet, to watch my HR and to get full benefit of what I need to track to be sure that I am sticking to my routine and getting 1 percent better - the treadmill is better for that. I have some 'rules' for myself to get the discipline around it - since I basically feel terrible all the time, i cannot wait to feel better to do this and now i have learned that I feel WORSE when I don't do it so I have to do something. It's all that is in my control is whether or not I can try to do my stretching, the exercises, the box breathing... and then everything else is up to God. My telling you this is in deep hope and prayers that you can find what you may be able to do as a one step at a time. I pray that you don't lose hope. When you say kill me or cure me - that scares me! We all care for you even though not met you --> please call 988. They can talk with you and help. You are absolutely NOT better off dead --> you have gifts to share and things to learn and teach in the world yet. My deepest hopes for you as you learn how to grieve fully. I share some to let you know you are not alone. God bless you. You matter. You can find a way. Ask if you have questions -- maybe everyone on this group can figure some things out together! I appreciate the support and readings so far. Thank YOU.

Jump to this post

Thank You so much for your thoughts and words of encouragement.
It's so hard, if impossi

REPLY
summerof42 | @summerof42 | Jun 10, 2023

I met with a Dr. at Mayo who specializes in Long Term Covid. I had each and every symptom since having Covid in Nov '21. It was a mild case (I have not been vaccinated - I know stupid me) and I felt so proud in getting through it, especially since I was going through other health issues prior to getting Covid an experiencing felling quite ill, extreme weight loss, sternum pain, etc. At that time I was told I had Costochrondritis and I believe I was misdiagnosed.

Fast forward to May '23, with each and every passing month since getting Covid i continued to worsen. The trembling feeing in the sternum/chest and feeling like your heart is jumping out of your chest is horrible. That and feeling such anxiety and in a constant "flight or fight" mode. Then there's the dizzinesses, weakness, and since I had Covid I developed dry-eye syndrome and a chalazion which can't get rid of, even after 2 surgeries.

With that said, the Doc at Mayo prescribed a medication which he said is meant for ADHD, but since LT Covid is causing inflammation and wreaking havoc on the nervous system. I haven't take the Rx yet as I'm frightened. I don't have ADHD and the literature states it causes low blood pressure and mine is already low, given my weight at 94 lbs. Just don't know what to do and want my fabulous life back and get out there walking, hiking,
biking, yoga, working in yard.

REPLY
joansmurphy | @joansmurphy | Jun 11, 2023

Bill my heart aches for you. Please look for a new doctor who is both smart and compassionate. They can be hard to find but they are out there. Perhaps if we knew your county & state, one of us may know someone. I recommend going to a board certified rheumotologist. They spend a lot of time with their patients and do a lot of tests to find the causes and will work with you to alleviate symptoms. Talk to us anytime.

REPLY
1 reply
tjprather1 | @tjprather1 | Jun 11, 2023

My experience with log COVID is don’t read all the negative thoughts. Take your doctor’s advice and more forward.

REPLY
1 reply
jrg200911 | @jrg200911 | Jun 11, 2023
In reply to @felicia2 "So sorry! I have similar problems-do you know of Any meds to recommend for long Covid..." + (show)
@felicia2

So sorry! I have similar problems-do you know of Any meds to recommend for long Covid joint pain and chronic fatigue? Can a Neurologist help?
Blessings!😇

Jump to this post

I haven’t begun taking it yet, but my Long COVID Recovery Clinic physician has just prescribed Low Dose (LDN) 1-3mg/day to help with my brain fog, pain, and fatigue. It is proving effective in the limited studies and trials that have been done. You may want to ask your doctor about it.
https://www.peoplespharmacy.com/articles/should-doctors-consider-low-dose-naltrexone-for-long-covid

REPLY
1 reply
williamkelly3370 | @williamkelly3370 | Jun 11, 2023
In reply to @tjprather1 "My experience with log COVID is don’t read all the negative thoughts. Take your doctor’s advice..." + (show)
@tjprather1

My experience with log COVID is don’t read all the negative thoughts. Take your doctor’s advice and more forward.

Jump to this post

That's the problem, they don't have any advice. One doc told me "I need to get over the death of my wife of 38 years" Insane

REPLY
View MoreView Less
Please sign in or register to post a reply.