Long Covid has ruined my life and marriage

I'm so sorry that you're going through this.
My husband has been somewhat supportive, but even as supportive as he can be at times, it's almost not enough support for me and I get so frustrated which leads to alot of arguments. I know he's trying, but sometimes I think he questions the severity of my "condition". and it's maddening for me.
My life was also turned upside down after the covid vaccines in 2022. It has been a long dreadful, painful 3 yhears. All of my joints have been affected and so has my quality of life because of it. I have had to resort to a cane now for stability and my 20 + years of yoga and 3- 5 mile a day walking have had to be put on hold since contracting this.
What are your syptoms? This has absoultely ruined my life as I knew it. I hope your husband can see his way clear to understanding the complete devastation of long haul covid and it's many dibilitating symptoms.
Sue

I came down with COVID in the afternoon of the morning in which I received a booster in November 2021. I have a list a page and a half long of things that I have dealt with and are dealing with. I understand what it is like to not be believed. My primary doctor was almost in tears a year and a half ago when he looked at me and said, I have no idea what else to do for you. It was helpful to know that he cared. I think our spouses care also, but they are like our doctors, and ourselves if we are honest, they don't know what to do either. I don't think it is helpful to call them idiots or claim they don't care. If you think about it you are not the person you used to be and this doesn't only impact yourself, it impacts them also. My wife and I have put things on hold or canceled future plans because of me. This isn't fair to either of us, but understand that they are not married to the same person they used to be. You may not feel like being as intimate as they would like to receive or need to receive from you. I know I've had to decline things when my head is spinning like or top, or I can't keep food down, etc. Just saying it maybe good to have a sit down honest and open conversation regarding how this is impacting the other person as well, and then pray together afterwards.

@suecedar1028

I hope you get relief from your pain!

I've got bone on phone in my knees, too, one hip replacement, and the other one not that great.

I also have post-herpetic neuralgia from previously uncontrolled reactivations of internal shingles (ZSH). I also have osteoarthritis in multiple joints.

I saw on your profile that you were having neuropathy in your feet. I went through a time where I had something like that. I couldn't bear weight on my feet. It felt like I was walking on sharp rocks. When my doctor ran a pin-like tool across the bottom of my feet, I couldn't even feel it. We never got it figured out, but it finally went away. I did not have plantar fasciitis! Did you experience something like this?

@jfbock my husband was diagnosed with a brain tumor years ago. He has changed a lot. I had to learn to love the person he became. Now, I have changed and am a different person too. We do pray together and believe in a miracle that all this will go away. Thank you for your advice
Take care

@drbf I also have bone on bone in both knees and severe neuropathy. I've currently started back with another round of IVIG reatments for CIDP (Chronic Inflammatory Demylitating Polyneuopathy,) but it's to early to say whether I will see any kind of improvement.
THe most difficult part for me is that I was very healthy pre-covid and vaccines. I was an advanced yoga student and a daily walker for 20 + years. I recognize that being angry about this is not helping me, but it's so difficult not to find myself in a place of even remotely, acceptance.

It sounds like you were given EMG testing. When that little prickly rod is rolled on my feet, (not sure what that tool is called...lol) I too feel nothing. I have also been diagnoised with small fiber neuropathy and peripheral neuropathy all of which I hadnt a clue about before covid! Now it's absoultely screaming at me! Argh

kiddo14 @kiddo14

Sorry you're having the issues with your husband. I have had to educate my doctors about Long-COVID and PVS. Here is some information I've posted on "Post Vaccine Syndrome" (PVS). Note Akiko Iwasaki is a good person to follow (Yale Medical - Immunology Dept Head, has her own Lab with a number of doctors doing research on this) .

My journey, I added Allergy/ Immunology to my list of doctors (my Neurologist gave referral - I would think a PCP could also give referral). They run a different set of Lab Work. First to find something that was out of range - something with IgG.

8/16/2025 Comparative Analysis of Long COVID and Post-Vaccination Syndrome:
2/19/2025 - A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
10/19/2023 (video) Harlan Krumholz and Akiko Iwasaki (Rishi Shiah, Lilo Wu, and Adith Arun) discuss preliminary findings and answer questions from LISTEN participants.
I listed the Symptoms Long Covid – PVS post-vaccination syndrome (very interesting)

8/16/2025 Comparative Analysis of Long COVID and Post-Vaccination Syndrome:
https://www.medrxiv.org/content/10.1101/2025.08.14.25333639v1
“Question - What are the similarities and differences between long COVID and post-vaccination syndrome (PVS)?

Findings In this cross-sectional study of 682 individuals, machine learning models identified distinct symptoms between long COVID and PVS. Long COVID was characterized by brain fog, altered sense of smell, and shortness of breath, while PVS was associated with burning sensations, neuropathy, and numbness.”

Feb 19, 2025 - A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
“COVID-19 vaccines have been instrumental in reducing the impact of the pandemic, preventing severe illness and death, and they appear to protect against long COVID. However, some individuals have reported chronic symptoms that developed soon after receiving a COVID-19 vaccine. This little-understood, persistent condition, referred to as post-vaccination syndrome (PVS), remains unrecognized by medical authorities, and little is known about its biological underpinnings.”
(click link to read more)

10/19/2023 Harlan Krumholz and Akiko Iwasaki (Rishi Shiah, Lilo Wu, and Adith Arun) discuss preliminary findings and answer questions from LISTEN participants.
https://medicine.yale.edu/ycci/listen-study/video/
The Yale LISTEN Study Town Hall: October 2023

The entire Town Hall is very interesting, here are 4 sections I found enlightening.

8:00 minute - Difference in Percent of Participants Experiencing Symptom (Long Covid – PVS post-vaccination syndrome; Note: the graphic chart is informative)

Long Covid –

Memory problems, Changed sense of smell, Brain fog, Shortness of breath, Cough, Sore throat, Excessive fatigue, Difficulty speaking properly, Changed sense of taste, Fatigue, Congested or runny nose, Phantom smells, Runny nose, Phlegm in back of throat, Headache, Constant thirst, Night sweats, Hypersomnia, Confusion, Insomnia, Hair loss, Dry scalp or dandruff, Dizziness, Throat pain or discomfort, Postnasal drip, Exercise Intolerance, Wheezing, Swollen hands or feet, Cold/burning lung sensation, Changes in voice, Phantom tastes

PVS -
Loss of hearing, Suicidal thoughts, Feelings of impending doom, Palpitations, Tinnitus, Numbness, Internal vibration, Neuropathy, Burning sensations

There may be some newer information on PVS.

Also, I remember someone on Mayo Clinic Connect saying it was a mold issue -- https://connect.mayoclinic.org/discussion/its-mold-illness-stupid/

There is also "Long COVID Research Consortium" https://polybio.org/longcovid/

It’s been a journey researching, educating doctors from my research, finding doctors I didn't know existed...
Best wishes to you!

🍀

kiddo14 @kiddo14

Sorry you're having the issues with your husband. I have had to educate my doctors about Long-COVID and PVS. Here is some information I've posted on "Post Vaccine Syndrome" (PVS). Note Akiko Iwasaki is a good person to follow (Yale Medical - Immunology Dept Head, has her own Lab with a number of doctors doing research on this) .

My journey, I added Allergy/ Immunology to my list of doctors (my Neurologist gave referral - I would think a PCP could also give referral). They run a different set of Lab Work. First to find something that was out of range - something with IgG.

8/16/2025 Comparative Analysis of Long COVID and Post-Vaccination Syndrome:
2/19/2025 - A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
10/19/2023 (video) Harlan Krumholz and Akiko Iwasaki (Rishi Shiah, Lilo Wu, and Adith Arun) discuss preliminary findings and answer questions from LISTEN participants.
I listed the Symptoms Long Covid – PVS post-vaccination syndrome (very interesting)

8/16/2025 Comparative Analysis of Long COVID and Post-Vaccination Syndrome:
https://www.medrxiv.org/content/10.1101/2025.08.14.25333639v1
“Question - What are the similarities and differences between long COVID and post-vaccination syndrome (PVS)?

Findings In this cross-sectional study of 682 individuals, machine learning models identified distinct symptoms between long COVID and PVS. Long COVID was characterized by brain fog, altered sense of smell, and shortness of breath, while PVS was associated with burning sensations, neuropathy, and numbness.”

Feb 19, 2025 - A small number of people report chronic symptoms after receiving COVID-19 shots. A new study provides clues for further research.
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
“COVID-19 vaccines have been instrumental in reducing the impact of the pandemic, preventing severe illness and death, and they appear to protect against long COVID. However, some individuals have reported chronic symptoms that developed soon after receiving a COVID-19 vaccine. This little-understood, persistent condition, referred to as post-vaccination syndrome (PVS), remains unrecognized by medical authorities, and little is known about its biological underpinnings.”
(click link to read more)

10/19/2023 Harlan Krumholz and Akiko Iwasaki (Rishi Shiah, Lilo Wu, and Adith Arun) discuss preliminary findings and answer questions from LISTEN participants.
https://medicine.yale.edu/ycci/listen-study/video/
The Yale LISTEN Study Town Hall: October 2023

The entire Town Hall is very interesting, here are 4 sections I found enlightening.

8:00 minute - Difference in Percent of Participants Experiencing Symptom (Long Covid – PVS post-vaccination syndrome; Note: the graphic chart is informative)

Long Covid –

Memory problems, Changed sense of smell, Brain fog, Shortness of breath, Cough, Sore throat, Excessive fatigue, Difficulty speaking properly, Changed sense of taste, Fatigue, Congested or runny nose, Phantom smells, Runny nose, Phlegm in back of throat, Headache, Constant thirst, Night sweats, Hypersomnia, Confusion, Insomnia, Hair loss, Dry scalp or dandruff, Dizziness, Throat pain or discomfort, Postnasal drip, Exercise Intolerance, Wheezing, Swollen hands or feet, Cold/burning lung sensation, Changes in voice, Phantom tastes

PVS -
Loss of hearing, Suicidal thoughts, Feelings of impending doom, Palpitations, Tinnitus, Numbness, Internal vibration, Neuropathy, Burning sensations

There may be some newer information on PVS.

Also, I remember someone on Mayo Clinic Connect saying it was a mold issue -- https://connect.mayoclinic.org/discussion/its-mold-illness-stupid/

There is also "Long COVID Research Consortium" https://polybio.org/longcovid/

It’s been a journey researching, educating doctors from my research, finding doctors I didn't know existed...
Best wishes to you!

🍀

I came down with COVID in the afternoon of the morning in which I received a booster in November 2021. I have a list a page and a half long of things that I have dealt with and are dealing with. I understand what it is like to not be believed. My primary doctor was almost in tears a year and a half ago when he looked at me and said, I have no idea what else to do for you. It was helpful to know that he cared. I think our spouses care also, but they are like our doctors, and ourselves if we are honest, they don't know what to do either. I don't think it is helpful to call them idiots or claim they don't care. If you think about it you are not the person you used to be and this doesn't only impact yourself, it impacts them also. My wife and I have put things on hold or canceled future plans because of me. This isn't fair to either of us, but understand that they are not married to the same person they used to be. You may not feel like being as intimate as they would like to receive or need to receive from you. I know I've had to decline things when my head is spinning like or top, or I can't keep food down, etc. Just saying it maybe good to have a sit down honest and open conversation regarding how this is impacting the other person as well, and then pray together afterwards.

@suecedar1028 I have horrible neuropathy, brain fog, chronic fatigue, pain in my legs which affects me walking.
My husband has been helping me a lot. I think the last couple of months talking about it has helped. I am depressed about losing my job and everything I loved about my life. My dr did prescribe an antidepressant. Seems to be helping a little.
Praying that they continue research and find what can help us. Hugs