1. < Post-COVID Recovery & COVID-19

Extreme fatigue and exhaustion

Posted by bba3 @bba3, Nov 30, 2023

My daughter has had COVID several times (4-5). The fatigue and exhaustion has eventually weaned but this last time (since February) her long-COVID symptoms remain. There are times when she's very tired and can do a little at a time and then take long period of rest, but there are also times when the exhaustion is so severe she can fall asleep in the middle of eating! She will literally sleep for days on end!

When she's not sleeping all day, I get encouraged that perhaps it (at least that symptom) is improving but then she will have these flare-ups and there's literally nothing she can do to stay awake.
She has the other symptoms as well. Brain fog and confusion can be very severe. She also has had breathing issues and pain that shoots down her leg into her feet.

To complicate things more, she is unable to work so is on Medicaid and it's difficult to get doctors to accept Medicaid. We are in VA. She is searching for a good regular doctor (internest) and then will go from there. I am having difficulty determining which doctor she should go to after that because she has so many issues.

The other issue is that due to her shortness of breath, she nearly passed out when in the post office and fell and as a result tore the labrum in her hip and has 4 bulging discs. She is seeing 2 ortho doctors and has been going to PT (when she doesn't have to cancel due to fatigue) but it is no better and will likely need surgery. She has a difficult time dealing with all these doctors at the same time which is why I'm trying to determine which one she should go to next after finding a regular doctor (Infectious disease, rheumatologist, neurologist, etc). This overwhelms her so we are trying to the "best" thing next. She has been to a pulmonologist and could not finish the pulmonary function test due to lack of breath. Dr was a bust - absolutely no help and said maybe she has asthma!

Blood tests months ago revealed an extreme vitamin D deficiency but the doctor only had her take OTV vitamin - not a high dosage even though she was told this was one of the lowest she's ever seen in her patients.

If only we can find someone who can help be her advocate. Feel like we are all on our own.
We are in Northern VA by Dulles Airport if anyone knows of any good doctors to recommend. Thank you all for "listening" and providing any info that you can. God bless us all.

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da69 | @da69 | Feb 1 4:21pm
In reply to @bba3 "Thank you for your reply. I am sorry you are experiencing this, too. Have you found..." + (show)
@bba3

Thank you for your reply.
I am sorry you are experiencing this, too.
Have you found anything that has been helpful?

She had to deal with a stressful situation yesterday and she's been depleted ever since. The fatigue, as you know, is so extreme.

Are you taking / doing anything that has been helpful?

Jump to this post

I have had tests (All normal)...Tried vitamins etc etc.
I just pace myself and if i plan anything i also plan to need time to recover.
I have been trying to get into a long covid clinic but we have only 1 near me and that is like pulling teeth with my insurance and doctor referrals.
I just do the best i can for now.
I wish i had the answers for your daughter and i know i am not much of a help
but i am thinking of you guys.

REPLY
maxb1971 | @maxb1971 | Feb 2 2:59pm

Most importantly, please give your daughter a hug of understanding which I have just sent you. Seemingly the lack of understanding and correlation between the multitude and diverse set of symptoms. Us, long, haulers experience, leaves the medical community at a virtual stalemate. You are absolutely not going out on a tangent, and we all need to be our own advocates at this point. The reality is that if Covid is not going anywhere, we are likely looking at a life of long haulers for a minimum of a couple of generations. We must not allow medical gaslighting, or lack of advances, deter us from having a voice. Everything you have mentioned is something I am going through, and it is very real, and it must be addressed through specialized teams that can collectively understand how and why our bodies are being attacked through our respiratory system, G.I. tracks, impacting our organs, brains, and skeletal structures. There are a lot of moving parts with this beast. As ordinary citizens, we are at the mercy of the medical system, but we can support and understand each other the way nobody else can. It’s almost a form of grieving that is not understood by anyone who has never lost a loved one. Presumably, none of us really know each other, but I can assure you we are all very much connected by this existential crisis. We must join together, even if just in our thoughts and prayers. Hope is only lost if we let it slip away.

REPLY
1 reply
yoni | @yoni | Feb 2 11:59pm

I’m sorry to hear about your daughters issues, they are very complex, and I really can’t advise you on most of them except for the low vitamin D. Vitamin D is extremely inexpensive to purchase, be sure to get a supplement that has vitamin K with it so it absorbs better into the body. You can take up to 5000 mg a day when you’re deficient, which is what I did until my levels were normal. Now I take 5000 mg twice a week and get out into the sun for 10 to 15 minutes a day minimum

REPLY
tabbyjean | @tabbyjean | Feb 8 2:17pm

I’ve had Long Covid since my infection in March 2020. Been a huge struggle and when I felt things were improving a little, I got Covid again in October 2022 which caused a major flare up of Long Covid. My typical flare symptoms are shortness of breath with any exertion, chest pain or rib pain, coughing, and extreme fatigue/exhaustion where I’m still tired whether or not I get a ton of sleep, losing hair, phantom smell or taste, etc…

My Vitamin D was very deficient on 2,000 units after having Covid in March 2020. I was also told to go on smaller doses but I did it on my own and took 10,000 units daily (drops sublingual) and it took 1 to 1.5 years before my levels finally hit on the high end. Currently taking 8,000 units daily to maintain and have my Vitamin D checked every 6 months. My iron levels also were low after having Covid in March 2020 and I’m on a higher dosing of this. Along with my vitamin D getting checked every 6 months, my iron levels are also checked every 6 months.

I see a Long Covid pulmonologist who has kept up with research and recommends things or meds that are showing promise. Low dose Naltrexone was recommended because it helps with the chronic fatigue, shortness of breath, and as an extra benefit it helps with chest discomfort or pain. I am on 3mg PO daily and it had helped until just recently where I have had a major flare that was more severe than it has been since 2020. So we are looking at increasing it to 4 or 5mg PO daily. The typical range for low dose Naltrexone is 1-5mg PO daily. So, we will see.

It’s been a struggle and I’ve been constantly looking for things to help. I see a chiropractor regularly for the chest/rib pain and have massages regularly to help with muscle pain. It’s been helping but only so far.

REPLY
1 reply
bba3 | @bba3 | Feb 9 10:25am
In reply to @tabbyjean "I’ve had Long Covid since my infection in March 2020. Been a huge struggle and when..." + (show)
@tabbyjean

I’ve had Long Covid since my infection in March 2020. Been a huge struggle and when I felt things were improving a little, I got Covid again in October 2022 which caused a major flare up of Long Covid. My typical flare symptoms are shortness of breath with any exertion, chest pain or rib pain, coughing, and extreme fatigue/exhaustion where I’m still tired whether or not I get a ton of sleep, losing hair, phantom smell or taste, etc…

My Vitamin D was very deficient on 2,000 units after having Covid in March 2020. I was also told to go on smaller doses but I did it on my own and took 10,000 units daily (drops sublingual) and it took 1 to 1.5 years before my levels finally hit on the high end. Currently taking 8,000 units daily to maintain and have my Vitamin D checked every 6 months. My iron levels also were low after having Covid in March 2020 and I’m on a higher dosing of this. Along with my vitamin D getting checked every 6 months, my iron levels are also checked every 6 months.

I see a Long Covid pulmonologist who has kept up with research and recommends things or meds that are showing promise. Low dose Naltrexone was recommended because it helps with the chronic fatigue, shortness of breath, and as an extra benefit it helps with chest discomfort or pain. I am on 3mg PO daily and it had helped until just recently where I have had a major flare that was more severe than it has been since 2020. So we are looking at increasing it to 4 or 5mg PO daily. The typical range for low dose Naltrexone is 1-5mg PO daily. So, we will see.

It’s been a struggle and I’ve been constantly looking for things to help. I see a chiropractor regularly for the chest/rib pain and have massages regularly to help with muscle pain. It’s been helping but only so far.

Jump to this post

Hi - thank you for your response.
I am sorry you're experiencing this again after starting to see an improvement from the first COVID infection.
Do you know why it was recommended to go on smaller doses of Vitamin D? I can understand starting on a lower dose and gradually increasing it, but other than that I don't understand the reluctance on the higher dosage.
I am glad you've found a pulmonologist who is keeping up with COVID research. I hope you continue to improve under that care.
Please let us know if you find any other remedies that are helpful.
We are also looking for remedies for cognitive issues; my daughter has been experiencing more confusion and comprehension issues.
Praying for all COVID suffers and their families.

REPLY
bba3 | @bba3 | Feb 10 8:26am
In reply to @maxb1971 "Most importantly, please give your daughter a hug of understanding which I have just sent you...." + (show)
@maxb1971

Most importantly, please give your daughter a hug of understanding which I have just sent you. Seemingly the lack of understanding and correlation between the multitude and diverse set of symptoms. Us, long, haulers experience, leaves the medical community at a virtual stalemate. You are absolutely not going out on a tangent, and we all need to be our own advocates at this point. The reality is that if Covid is not going anywhere, we are likely looking at a life of long haulers for a minimum of a couple of generations. We must not allow medical gaslighting, or lack of advances, deter us from having a voice. Everything you have mentioned is something I am going through, and it is very real, and it must be addressed through specialized teams that can collectively understand how and why our bodies are being attacked through our respiratory system, G.I. tracks, impacting our organs, brains, and skeletal structures. There are a lot of moving parts with this beast. As ordinary citizens, we are at the mercy of the medical system, but we can support and understand each other the way nobody else can. It’s almost a form of grieving that is not understood by anyone who has never lost a loved one. Presumably, none of us really know each other, but I can assure you we are all very much connected by this existential crisis. We must join together, even if just in our thoughts and prayers. Hope is only lost if we let it slip away.

Jump to this post

Thank you for your understanding and beautiful response.

REPLY
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