Coronavirus Disease 2019 (COVID-19)

Hello everyone
My name is Lizzy and I'm 25.
I have hadPOTS for quite a while but not like this. I suspect I developed it after I got in a really bad roll over crash in 2020. I drove with a migraine with aura, just trying to get home because my aura was starting (I have had migraine since I was 6, it was raining and that's my trigger, and I hydroplaned and rolled off the highway at 75mph). They did an MRI and CT and everything was clear but ever since then I had severe coathanger pain and would see chiropractors and also get lidocaine injections in my back because at points I couldnt turn my neck left or right. Then, a month later, I started fainting if I got really hot, my sodium and potassium was reading low, and I was told I had mild POTS. But it was *mild*. It only rarely flared. Only in the fall, or if I was really hot or dehydrated or really stressed. I'd be told to have more sodium and water. To stay out of the heat, watch out for dizziness, wear compressions. There was no tilt table test or follow up. I'd go on and off a really low dose of propranolol and that was it, the end, that was as bad as I thought it would ever be.

I was really active, very academic, very go, go, go. I got married, I got ready to finish my bachelor's, I worked in a lab and went to school full time and got ready to apply for grad school, all while managing the fringes of poverty and scraping by and budgeting every last cent for my family to make it. I was a deliver driver full time in an unairconditioned car this summer...but I needed to pay bills and I had Gatorade and watched for my triggers and bills HAD to be paid.

And then? Then I got sick. Like really sick.

Covid tested negative. Flu tested negative. Strep tested negative. It may have been mono. I don't know what it was, but it was awful. It doesn't matter what it was, I had a 104 fever and I've never been the same. Fatigue like I've never felt before in my life, weird respiratory symptoms, and suddenly, my POTs symptoms were worse than they had ever been.

In August the semester started. I was still off. I was falling asleep in class. That never happened, I'm a straight A college student. I thought maybe it was my thyroid because my mom has hypothyroidism. I scheduled an appointment. 3 weeks before the appointment, I fainted over and over and over. I went to the hospital, and they admitted me for extreme tachycardia, and I was there for like 2 weeks. They did work up after work up. Test after test. Everything was inconclusive or negative except orthostatic values pointing to POTs. They gave my fluids and 40 my of propranolol, pt, they did a short eeg. We are asking for a longer one because I throw up at flashing lights and the world smells like paint thinner sometimes before I faint so we are still not convinced I'm not sometimes having seizures.

I was released when it was shown I could walk very short distances without fainting but I need a mobility aid, at the bare minimum a cane, if not a wheelchair. I had to leave school. I cant drive. I am basically bed bound. I had to cut off almost all my hair because I can only tolerate lukewarm water for a shower 1x or 2x a week so my long hair was matted, Im still fainting at least 2x a week, I have a home health aid, I'm getting daily orthostatic migraines from literally just standing and going to the bathroom (our apartment is tiny, like 525 square feet), I cant cook for myself anymore because I almost fainted into the stove, and if I'm not fainting I'm vomiting. Im so tired and I hurt all the time and my brain fog is so bad and my heart rate is so high from literally just sitting up and doing absolutely nothing. I got visible and I'm going into exertion sometimes from like. Shifting in bed. Or digesting food. My stand tolerance is like. Presyncope at 3 minutes fainting or vomiting at 5 minutes.

I need to know this isn't going to be the rest of my life. I see cardiology Monday. Tilt table will be scheduled then, it would have been sooner but he was on vacation. Its the same doctor I saw in the hospital.

Has anyone had similar stories? Does anything make it better? Please tell me it gets better??

#trauma#forgiveness#Faith

When COVID came, my ex-husband got very, very sick. They took him to the hospital, and he was in critical condition. At that time, they did not let anybody inside. No visitors. No family beside the bed.

By then my children were grown. Shqipa — my miracle girl, the one I carried through nine months of sickness and prayer before she was born — had become a nurse. She called me and said, "Mommy, I have to go to Dad. Dad is very sick. He's in the hospital."

Even now, when I speak about this, I get very emotional. I was so scared for my daughter walking into that hospital, and I was scared for him too — because no matter what I went through, he was the father of my kids.

When she got there, he was in very critical condition. He could not talk anymore. He was on oxygen, and his oxygen was going down.

Then he asked my daughter to FaceTime me.

When I saw him on that screen, it was the hardest thing on earth. The father of my children, between life and death. He could not speak. But with his eyes, and with his hand, he was telling me something. I understood him. He was saying, "Pray for me."

I did not cry. But inside of me, I was breaking.

So I spoke to him. I said, "Listen to me very carefully. I want you to be strong. I want you to believe in God. In this sickness, you cannot get scared." I told him that people die because they are scared. "Don't be scared. Fight the fear and believe in God."

I told him to remember his father — a very, very good man who prayed a lot. I said, "Pray with your heart. I know you cannot move. Pray with your eyes. Pray with your soul. And God will be there. You are going to survive."

My daughter kept telling me, "Mommy, please pray for him." I said, "I promise, I am going to pray for him."

And it was not only her. All of my kids started calling me, one after another. They were scared. They were crying. "Mommy, please pray for Dad. Mommy, please forgive him and pray for him."

Even though he had been abusive with them when they were little — even though they carried their own painful memories — they did not call me with anger. They called me with tears, asking me to forgive him and pray for him.

That broke my heart in a deeper way. I had taught my children to pray. I had taught them that nothing can beat the prayer. Nothing. And in the scariest moment of their lives, I saw that they had learned. When fear came, my grown children did not reach for hate. They reached for prayer — the way I had taught them when they were small.

When I hung up the phone, I talked to God. There was no time to pray the way I usually pray. I just talked — with my soul, with my heart, with my mouth. "God, You know what to do. You know how to heal him. I cannot do it. No one in this world can do it — only You. I cannot see him dead. My kids need him. You have to heal him."

Then I called my older daughter. I said, "Listen. Go feed the poor, and make intention for your father to get better."

Within three or four hours, my daughter called me back. His oxygen was going up. He was going to be fine. They were going to move him out of the ICU.

After that, he recovered. And he changed. He started turning his face toward the kids. A few months later, he helped me get the apartment.

He told me later that when he was very sick, he thought he was going to die. And he asked God, "Give me another chance, so I can do for my kids." God gave him that second chance. And he kept his word.

I prayed for the father of my children when he was between life and death. And God answered. Sometimes the person you cried over in your hardest years becomes the person you pray for. That is what forgiveness looks like. That is what God can do.

)

When COVID came, my ex-husband got very, very sick. They took him to the hospital, and he was in critical condition. At that time, they did not let anybody inside. No visitors. No family beside the bed.

By then my children were grown. Shqipa — my miracle girl, the one I carried through nine months of sickness and prayer before she was born — had become a nurse. She called me and said, "Mommy, I have to go to Dad. Dad is very sick. He's in the hospital."

Even now, when I speak about this, I get very emotional. I was so scared for my daughter walking into that hospital, and I was scared for him too — because no matter what I went through, he was the father of my kids.

When she got there, he was in very critical condition. He could not talk anymore. He was on oxygen, and his oxygen was going down.

Then he asked my daughter to FaceTime me.

When I saw him on that screen, it was the hardest thing on earth. The father of my children, between life and death. He could not speak. But with his eyes, and with his hand, he was telling me something. I understood him. He was saying, "Pray for me."

I did not cry. But inside of me, I was breaking.

So I spoke to him. I said, "Listen to me very carefully. I want you to be strong. I want you to believe in God. In this sickness, you cannot get scared." I told him that people die because they are scared. "Don't be scared. Fight the fear and believe in God."

I told him to remember his father — a very, very good man who prayed a lot. I said, "Pray with your heart. I know you cannot move. Pray with your eyes. Pray with your soul. And God will be there. You are going to survive."

My daughter kept telling me, "Mommy, please pray for him." I said, "I promise, I am going to pray for him."

And it was not only her. All of my kids started calling me, one after another. They were scared. They were crying. "Mommy, please pray for Dad. Mommy, please forgive him and pray for him."

Even though he had been abusive with them when they were little — even though they carried their own painful memories — they did not call me with anger. They called me with tears, asking me to forgive him and pray for him.

That broke my heart in a deeper way. I had taught my children to pray. I had taught them that nothing can beat the prayer. Nothing. And in the scariest moment of their lives, I saw that they had learned. When fear came, my grown children did not reach for hate. They reached for prayer — the way I had taught them when they were small.

When I hung up the phone, I talked to God. There was no time to pray the way I usually pray. I just talked — with my soul, with my heart, with my mouth. "God, You know what to do. You know how to heal him. I cannot do it. No one in this world can do it — only You. I cannot see him dead. My kids need him. You have to heal him."

Then I called my older daughter. I said, "Listen. Go feed the poor, and make intention for your father to get better."

Within three or four hours, my daughter called me back. His oxygen was going up. He was going to be fine. They were going to move him out of the ICU.

After that, he recovered. And he changed. He started turning his face toward the kids. A few months later, he helped me get the apartment.

He told me later that when he was very sick, he thought he was going to die. And he asked God, "Give me another chance, so I can do for my kids." God gave him that second chance. And he kept his word.

I prayed for the father of my children when he was between life and death. And God answered. Sometimes the person you cried over in your hardest years becomes the person you pray for. That is what forgiveness looks like. That is what God can do.

Hi, my name is Nedelweiss. I'm here because I want to know more about long covid, ptsd, recovery, how to have fun with an illness

#MightyTogether

Hi All. My name is Leslie and I am looking for my tribe. I am struggling with Chronic Lyme along with Bartonella and Parasitic co-infections. Recently tacked on mold poisoning and MCAS. Also so very ADHD and perimenopausal. I was treated for Lyme with doxycycline years ago, but COVID brought out all the hidden nasties just waiting for a depleted immune system. And just like that, everything I worked so hard for is gone and I am just trying to survive. I am an eternal optimist, but this is heavy and so isolating. Just having a place to read others stories is pretty awesome right now. ❤️ It brings hope.

#MightyTogether #ADHD #LymeDisease

Hi, my name is TiellyTenn. I'm here because I am bedfast and think too much. I have long covid, Dysautonomia, OI (may have morphed into POTS), and new this week is CKD. Hoping to learn more here than I do from my fellow medical professionals.

#MightyTogether

Hi, my name is teachermom1992. I'm undiagnosed and I am desperate for answers because I need HELP. My body has been doing crazy things since 2024 and I have been to countless appointments, tests and specialists (what is avaliable in my area anyways)

This is going to be a long read but I am hoping (begging and praying🙏🙏) someone can help me.

​My "Before" Baseline :

​Baseline: Always active (high school English teacher, mom of young kids born sept 2022 and oct 2025), baseline normal always perfect BP.

​Lifelong info: Migraines since age 12, always freezing cold (loved jackets, fuzzy things, heated blankets, saunas, etc) but with a kinda low heat tolerance (would get super red faced and later a heat rash if I overheated - but it took a lot to get there, like a full day / days of being in the heat and being very active), easy bruising, extreme clumsiness (I run into things all the time, even doorframes), hyperextending joints in some places, and a few random fainting episodes over the years when tired/dehydrated.

​Where Everything Shifted (July 2024 while on vacation at Disney 😭):

​Out of nowhere in July 2024, I developed severe, unremitting cyclic nausea and vomiting. I am talking we were on vacation 18 hours from home and I woke up thinking I had to get sick and then I didn't stop for basically 7 months. Let's out it this way, I lost FORTY-FIVE POUNDS from being sick.

​Ended up having my gallbladder removed in Sept 2024 (HIDA scan said hyperactive gallbladder can cause that as well so we had to try something), but the nausea/vomiting came back 6 days post op. I was on short term disability from my job as a teacher from September to February, when i finally stopped getting sick daily.

​The Pregnancy Remission:

My symptoms started to get better, i thought because we had finally found the right medicines to knock it. Then, ​I found out I was pregnant in early 2025—and remarkably, all of my nausea and dysautonomia symptoms vanished 100% during that time. I felt amazing throughout pregnancy.

​The Postpartum Crash & What Episodes Feel Like:

Shortly after giving birth earlier this year, my body has slowly but completely collapsed into severe autonomic dysfunction since about 3 months pp. My daily episodes and symptoms have slowly started to come back and feel like:

➡️​Tachycardia & Bounding Pulse: Walking room-to-room sometimes makes my heart rate skyrocket (recently hit 150–170 bpm within minutes on a slow treadmill stress test). I feel a massive, pounding pulse in my face, ears, and head.

➡️​Temperature Storms: I get severe cold chills and deep internal shivering, which quickly flips into intense heat intolerance, facial flushing, and sweating. Like all over sweating for no reason. To the point I am so paranoid to be hot and I love in the south - so hiding inside isn't fun.

➡️​Sleep-to-Wake Inertia: Waking up is brutal—my BP drops low, and I feel like I physically cannot open my eyes or wake my brain up. Almost like I am drugged.

➡️​Physical Intolerances: Deep, aching soreness in my legs and feet (relieved by walking/stretching, was told it was plantar fasciatous since it gets better with movement), severe urinary urgency/frequency shifts, zero alcohol tolerance (and not that i was a huge drinker but I am a millennial, I have for sure woken up in a field somewhere and I had a good time in college), and sudden nausea flares and facial flushing. Also being HOT is the worst thing imaginable. Like I want to rip off my skin and run away from everything and everyone till I am cool and occasional my body will feel "heavy", mostly my legs, while I am going up stairs.

➡️​Systemic Stress Surges: When my heart rate spikes, my BP can jump as high as 180/91 from the adrenaline surge. But there have been days when I wake up and it is 83/42 and I can't get myself out of bed. I feel faint. And that triggers panic of course which makes it all worse.

➡️not wanting to argue or get political about it but it is relevant, I did have covid at least 4 times confirmed, once while I was 8 months pregnant and got the vaccine

➡️I have been tested for all the normal things. Diabetes, thyroid disorders, had an ANA panel. All came back "normal" or there was another reason something could have been off

➡️MOST RECENTLY AND WHY I NEED HELP

On Monday I woke up and my bp was low. I took nausea meds, drank water and tried to push through the things because I needed to leave for work. I started feeling like I was going to pass out to the point my husband came home from work, I had to call my neighbor for help and and we went to the doctor (not the ER because they always tell me i am dehydratedand send me away and I'd rather pay a smaller bill and see my doctor who is trying to help me find answers. THAT SAME NIGHT I PASSED OUT in the bathroom floor. I woke up nauseous and with stomach cramping, felt super hot, went to get sick and all I remember thinking is I need to lay down and being SO hot and sweaty. Next thing I knew I was laying on the tile floor covered in sweat and I couldn't feel my arms or hands and my body felt so heavy. I had to use an Alexa device nearby to call and wake up my husband because I couldn't yell loud enough for him to wake up.

​We are currently TRYING TO connect any dots that may be related or that could help find an answer. I had a negative tilt table test. I do take anxiety medication and have for years. I do not take extra to sleep if I need to wake up early the next day, but I do struggle to fall asleep. I had had a heart monitor on twice and an echo, my heart is structurally fine. Neurologist says she thinks it is some form of dysautonimia but wants to dig more.

Can anyone give me any insight?? Does this sound like something you have experienced?? I need HELP. Desperately. I want to be a good mom again. I have 4 kids, 2 of which are little and need me. I want to be a good teacher again and full of the energy and life that made me good at it. I want to live my life without carrying around fans, water, cooling towels and a BP monitor OR AT THE VERY LEAST know why, so when i have to explain things i have an actual answer. I just need help. I have never been so sad, terrified, and just defeated in my life. I just cry and cry and want answers

Please, I would love to hear your experiences or what has helped you! 💜

#MightyTogether #Anxiety #Migraine #ADHD