Colleen Young, Connect Director | @colleenyoung | Feb 21, 2022
@mamafluh this is a great discussion to gather tips from others dealing with longhaul COVID. Why don't you get the conversation started?
What symptoms do you have? What ones do you find the hardest to describe? What words or metaphors help you to communicate your symptoms to your doctor and feel understood?
I could write a book on this one. Even as a nurse I struggle to find the right words. I relied on the experiences my family had. I would always tell them I went to bed 45 woke up 85. The confusion is hard to describe when you’re confused. I would say what was difficult to do now versus in the past. I would describe my experiences as feeling like I was autistic sensitive to light and sound in touch.
For family now I say I’ve been thrown into a spectrum disorder that I don’t understand and that’s hard to navigate. But I encourage everyone to get evaluated for their symptoms to illuminate the fact that it’s not a physical function that is causing the problem but it’s actually a complex inflammatory neurological disorder. We may never be the same but we can work together to help one another and other people who don’t have the benefit of being part of this group I’m very grateful for everyone.
All various symptoms: My ‘Bag-o-Symptoms’
“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 - up until 9/11/2020, I would describe myself as healthy and active. All through Spring and Summer 2020 was walking 3-7 miles/day.): Symptoms came on literally overnight from 9/10/2020 to 9/11/2020. Hit me like a Mack Truck.
-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”
-If I push myself too much in a day (like take a shower AND leave the house for an errand or meal), I risk “paying for it later” with a “crash” of severe symptoms that sometimes last days. (Not always, mind you … lottery/Bag-o-Symptoms)
-In the early days after all the regular diagnostics came back with results in “Normal” range, my journal reads, “Just wish I could buy a clue on diagnosis.”
UPDATE: I’ve been accepted to the Mayo Clinic Post COVID Recovery Program - Rochester, MN. Initial (virtual) consult in April with a follow up week of in person diagnosis and treatment planning. Hopeful to “buy that clue”.
I could write a book on this one. Even as a nurse I struggle to find the right words. I relied on the experiences my family had. I would always tell them I went to bed 45 woke up 85. The confusion is hard to describe when you’re confused. I would say what was difficult to do now versus in the past. I would describe my experiences as feeling like I was autistic sensitive to light and sound in touch.
For family now I say I’ve been thrown into a spectrum disorder that I don’t understand and that’s hard to navigate. But I encourage everyone to get evaluated for their symptoms to illuminate the fact that it’s not a physical function that is causing the problem but it’s actually a complex inflammatory neurological disorder. We may never be the same but we can work together to help one another and other people who don’t have the benefit of being part of this group I’m very grateful for everyone.
I couldn’t agree with you more! I have told family members that this disease has the capability of attacking every organ in your body. It will be 2 months on March 3 that my symptoms started. Some of them have since subsided but others took there place. I just want to feel human again. This is my second time having Covid. The first time was before the vaccines came out and the second time I have been vaccinated. Like you am thankful for this platform.
All various symptoms: My ‘Bag-o-Symptoms’
“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 - up until 9/11/2020, I would describe myself as healthy and active. All through Spring and Summer 2020 was walking 3-7 miles/day.): Symptoms came on literally overnight from 9/10/2020 to 9/11/2020. Hit me like a Mack Truck.
-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”
-If I push myself too much in a day (like take a shower AND leave the house for an errand or meal), I risk “paying for it later” with a “crash” of severe symptoms that sometimes last days. (Not always, mind you … lottery/Bag-o-Symptoms)
-In the early days after all the regular diagnostics came back with results in “Normal” range, my journal reads, “Just wish I could buy a clue on diagnosis.”
UPDATE: I’ve been accepted to the Mayo Clinic Post COVID Recovery Program - Rochester, MN. Initial (virtual) consult in April with a follow up week of in person diagnosis and treatment planning. Hopeful to “buy that clue”.
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 were abated as I instead ran to my trusted refuge in time of trouble.
My Lord is carrying me and all is well with my soul. I still am committed to pursuing available treatment and find the path of recovery. Since receiving a COVID-POSITIVE T-Cell Test in August 2021, it is so much easier now that I’m being listened to and accepted within the Long Hauler’s medical community. Before then, well, not so much...
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.
I will update as I learn any tips and tricks and/or buy the clue for the winning diagnosis and treatment/therapy.
You have befriended me Lord Jesus
Even unto death
Even unto resurrected Life
It means so much to know I have Someone I can always count on
Out of praise my enemy flees and I, the winner,
am victorious in Christ Jesus
Life comes from knowing You as my Lord and Savior
For You are Life
My eyes are set on eternity,
yet there is a joy about today
There was a time Lord, when I came to You and You to me
Reborn ~ a babe in Christ
My mind was fed with the truth of Your precious Word
I was fed with You Lord, for You are the Truth and the Word
Now, through time and trials, You have been firmly rooted
growing in my heart and in my very life
I am content with this life Lord
and thank you for all that is in it
My desire is to know You fully Lord
and I have all eternity to allow Your work,
which You began,
to be made complete in me
Praise be to God
For in You all things are made possible
I could write a book on this one. Even as a nurse I struggle to find the right words. I relied on the experiences my family had. I would always tell them I went to bed 45 woke up 85. The confusion is hard to describe when you’re confused. I would say what was difficult to do now versus in the past. I would describe my experiences as feeling like I was autistic sensitive to light and sound in touch.
For family now I say I’ve been thrown into a spectrum disorder that I don’t understand and that’s hard to navigate. But I encourage everyone to get evaluated for their symptoms to illuminate the fact that it’s not a physical function that is causing the problem but it’s actually a complex inflammatory neurological disorder. We may never be the same but we can work together to help one another and other people who don’t have the benefit of being part of this group I’m very grateful for everyone.
Can you help us navigate this. My husband is having mouth ulcers,fever blisters and problems with sleeping and dreaming the same dream every night. He is just feeling bad. I believe it is neurological. Is it from the covid or could it be the remdesivir he took?
I don’t know about remdesnovir. But I experienced the same with mucositis. The pain keeps you up. Depending on the type of the sore you can ask your dentist or primary care for an oral rinse. Nystatin or Chlorohexidine. Rinses twice a week. You can also rinse with warm salt water. Avoid acidic foods. Take supplements biotin aloe. It will take time. My favorite advice is don’t eat or drink 4 hours before go to bed. You need to heal when you sleep. Ask you dr but you can also take Pepcid over the counter Zyrtec or Claritin and Benadryl all at night to block histamines h1 and h2 and sleep better. Drink lots of fluids. Good luck. Take to your primary care.
I have over a page and a half of typed symptoms. I take the list to every doctor I see, that way I do not forget any since my cognitive level is low.
Symptoms are broken down into body functions/area: breathing, digestion, head, heart, joint, limbs, muscles, skin, and misc. Then each specialist can focus on their area of expertise and have a reference sheet to review for more understanding. I take copies of all tests, doctors, procedures, and medications with results of each.
That way I do not have anxiety attack trying to remember everything and not getting any help from my brain.
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@mamafluh this is a great discussion to gather tips from others dealing with longhaul COVID. Why don't you get the conversation started?
What symptoms do you have? What ones do you find the hardest to describe? What words or metaphors help you to communicate your symptoms to your doctor and feel understood?
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Like -
Helpful -
Hug
2 ReactionsI could write a book on this one. Even as a nurse I struggle to find the right words. I relied on the experiences my family had. I would always tell them I went to bed 45 woke up 85. The confusion is hard to describe when you’re confused. I would say what was difficult to do now versus in the past. I would describe my experiences as feeling like I was autistic sensitive to light and sound in touch.
For family now I say I’ve been thrown into a spectrum disorder that I don’t understand and that’s hard to navigate. But I encourage everyone to get evaluated for their symptoms to illuminate the fact that it’s not a physical function that is causing the problem but it’s actually a complex inflammatory neurological disorder. We may never be the same but we can work together to help one another and other people who don’t have the benefit of being part of this group I’m very grateful for everyone.
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Helpful -
Hug
9 Reactions17+ Months Long COVID
All various symptoms: My ‘Bag-o-Symptoms’
“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 - up until 9/11/2020, I would describe myself as healthy and active. All through Spring and Summer 2020 was walking 3-7 miles/day.): Symptoms came on literally overnight from 9/10/2020 to 9/11/2020. Hit me like a Mack Truck.
-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”
-If I push myself too much in a day (like take a shower AND leave the house for an errand or meal), I risk “paying for it later” with a “crash” of severe symptoms that sometimes last days. (Not always, mind you … lottery/Bag-o-Symptoms)
-In the early days after all the regular diagnostics came back with results in “Normal” range, my journal reads, “Just wish I could buy a clue on diagnosis.”
UPDATE: I’ve been accepted to the Mayo Clinic Post COVID Recovery Program - Rochester, MN. Initial (virtual) consult in April with a follow up week of in person diagnosis and treatment planning. Hopeful to “buy that clue”.
-
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Helpful -
Hug
8 ReactionsI couldn’t agree with you more! I have told family members that this disease has the capability of attacking every organ in your body. It will be 2 months on March 3 that my symptoms started. Some of them have since subsided but others took there place. I just want to feel human again. This is my second time having Covid. The first time was before the vaccines came out and the second time I have been vaccinated. Like you am thankful for this platform.
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2 ReactionsWow, jrg -- so many serious-sounding, heart-related symptoms! Must've been a super-scary period for you.
And after all this time you're dealing with "stuff"!
Please keep us posted on how things go with the upcoming consults. Thank you.
/LarryG
Thank you LarryG for your concern 🤗
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 were abated as I instead ran to my trusted refuge in time of trouble.
My Lord is carrying me and all is well with my soul. I still am committed to pursuing available treatment and find the path of recovery. Since receiving a COVID-POSITIVE T-Cell Test in August 2021, it is so much easier now that I’m being listened to and accepted within the Long Hauler’s medical community. Before then, well, not so much...
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.
I will update as I learn any tips and tricks and/or buy the clue for the winning diagnosis and treatment/therapy.
[THANK YOU MY LORD JESUS]
Jody R Goode © 10/19/1989
You have befriended me Lord Jesus
Even unto death
Even unto resurrected Life
It means so much to know I have Someone I can always count on
Out of praise my enemy flees and I, the winner,
am victorious in Christ Jesus
Life comes from knowing You as my Lord and Savior
For You are Life
My eyes are set on eternity,
yet there is a joy about today
There was a time Lord, when I came to You and You to me
Reborn ~ a babe in Christ
My mind was fed with the truth of Your precious Word
I was fed with You Lord, for You are the Truth and the Word
Now, through time and trials, You have been firmly rooted
growing in my heart and in my very life
I am content with this life Lord
and thank you for all that is in it
My desire is to know You fully Lord
and I have all eternity to allow Your work,
which You began,
to be made complete in me
Praise be to God
For in You all things are made possible
Thank You my Lord Jesus
Thank You
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2 ReactionsBeautiful reply, Jody! Don't see how you can miss getting better.
(((Beams))) of health for a speedy... and complete recovery are being sent to you from the Sunshine State.
/LarryG
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1 ReactionCan you help us navigate this. My husband is having mouth ulcers,fever blisters and problems with sleeping and dreaming the same dream every night. He is just feeling bad. I believe it is neurological. Is it from the covid or could it be the remdesivir he took?
I don’t know about remdesnovir. But I experienced the same with mucositis. The pain keeps you up. Depending on the type of the sore you can ask your dentist or primary care for an oral rinse. Nystatin or Chlorohexidine. Rinses twice a week. You can also rinse with warm salt water. Avoid acidic foods. Take supplements biotin aloe. It will take time. My favorite advice is don’t eat or drink 4 hours before go to bed. You need to heal when you sleep. Ask you dr but you can also take Pepcid over the counter Zyrtec or Claritin and Benadryl all at night to block histamines h1 and h2 and sleep better. Drink lots of fluids. Good luck. Take to your primary care.
-
Like -
Helpful -
Hug
1 ReactionI have over a page and a half of typed symptoms. I take the list to every doctor I see, that way I do not forget any since my cognitive level is low.
Symptoms are broken down into body functions/area: breathing, digestion, head, heart, joint, limbs, muscles, skin, and misc. Then each specialist can focus on their area of expertise and have a reference sheet to review for more understanding. I take copies of all tests, doctors, procedures, and medications with results of each.
That way I do not have anxiety attack trying to remember everything and not getting any help from my brain.
-
Like -
Helpful -
Hug
3 Reactions