What’s your long COVID story?

[Anonymous]

We’ve struggled to get back to normal after long COVID.

I’d love to hear what’s worked to get better.

[Anonymous]

Who is we? Your whole family?

[Anonymous]

I’m sorry OP. How long have you had symptoms?

[Anonymous]

What part is not back to normal?

My friend lost her taste for a long time - 2 years later and still can't eat certain foods, like chocolate and coffee, because they taste horrible to her. She tried the kits where you smell different things and it didn't do much for her.

[Anonymous]

My cousin has had long Covid since November 2020. She was told a hyperbaric chamber could help. We actually have one. They are expensive but could be worth it.

[Anonymous]

chronic headaches and fatigue. tingling/numbness in arms and legs.

[Anonymous]

Physical therapy
Acupuncture
Alexander technique
Erg rower

[Anonymous]

Anonymous wrote:We’ve struggled to get back to normal after long COVID.

I’d love to hear what’s worked to get better.

Ugh, I'm sorry. I struggled for quite a while with long Covid but I'm better now.

I got Covid in October of 2022, most likely on a long flight to Africa. I got very sick while visiting the Ngorongoro Crater, and the doctor I saw a few days later when I got to Zanzibar told me I'd had HAPE (high altitude pulmonary edema) while staying at Ngorongoro (we stayed at very high altitude). I probably did have HAPE (very, deadly, btw), but probably was predisposed to it because I had Covid, which I didn't know. I saw that doctor, a Tanzanian doctor, via telehealth while staying at a resort and it didn't occur to her or to me that I had Covid. So I didn't get treated or even tested even though I was having pretty extreme shortness of breath (at one point I tried to walk to the restaurant at our resort and literally collapsed to the ground) and fatigue that kept me in bed even though I was on vacation. I had zero appetite and only ate to be polite to the resort chef who made me special stuff. With HAPE, that shouldn't have continued after I got down to sea level; but it did. Didn't figure out it was Covid until my DH turned up sick on the flight home (yes, I'm pretty sure we gave at least some of the people in that business class cabin Covid, and yes I feel badly about it) and we tested positive when we got home. I was coughing like crazy.

I didn't stop coughing and wheezing for almost a year and half. Had terrible fatigue and brain fog. I was seen in the Medstar Long Covid clinic at about the 8-month mark. The neurologist I saw got me a sleep study and it turned out the brain fog was sleep apnea. She said that although the reason why isn't apparent, there has been a big increase in diagnosis of sleep apnea in long covid sufferers. Once I got the sleep apnea treated with cpap not only did my brain fog get fixed, my coughing stopped as well. My appetite has never come back, but I'm overweight so that is probably a good thing.

I struggled hard, and cried a lot thinking I'd spend the rest of my life sick and exhausted. But when I heard that long covid lasts for up to 18 months in some people that gave me hope because it meant some people suffered as long as I did and then did get better. Fortunately I did too.

I hope you get better, too. The odds are that you will.

[Anonymous]

Heart palpitations and high BP. But could be peri-menopause too. who knows.

[Anonymous]

My husband has had it since his “mild” case of COVID in June 2022. The usual lineup of symptoms.

MedStar’s clinic is good but there are no specific treatments for long COVID so they throw what they can at various symptoms.

He’s fully disabled—has not been able to work or drive since. Can’t be upright longer than about 45 minutes without issues. I’m standing on a CVS line for his meds now, actually.

[Anonymous]

Honestly, just time and pushing forward. I had a long slog for about 9 months. Two years out the only remaining symptom is tinnitus 24/7. I try not to focus on it because if I do I will go insane.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We’ve struggled to get back to normal after long COVID.

I’d love to hear what’s worked to get better.

Ugh, I'm sorry. I struggled for quite a while with long Covid but I'm better now.

I got Covid in October of 2022, most likely on a long flight to Africa. I got very sick while visiting the Ngorongoro Crater, and the doctor I saw a few days later when I got to Zanzibar told me I'd had HAPE (high altitude pulmonary edema) while staying at Ngorongoro (we stayed at very high altitude). I probably did have HAPE (very, deadly, btw), but probably was predisposed to it because I had Covid, which I didn't know. I saw that doctor, a Tanzanian doctor, via telehealth while staying at a resort and it didn't occur to her or to me that I had Covid. So I didn't get treated or even tested even though I was having pretty extreme shortness of breath (at one point I tried to walk to the restaurant at our resort and literally collapsed to the ground) and fatigue that kept me in bed even though I was on vacation. I had zero appetite and only ate to be polite to the resort chef who made me special stuff. With HAPE, that shouldn't have continued after I got down to sea level; but it did. Didn't figure out it was Covid until my DH turned up sick on the flight home (yes, I'm pretty sure we gave at least some of the people in that business class cabin Covid, and yes I feel badly about it) and we tested positive when we got home. I was coughing like crazy.

I didn't stop coughing and wheezing for almost a year and half. Had terrible fatigue and brain fog. I was seen in the Medstar Long Covid clinic at about the 8-month mark. The neurologist I saw got me a sleep study and it turned out the brain fog was sleep apnea. She said that although the reason why isn't apparent, there has been a big increase in diagnosis of sleep apnea in long covid sufferers. Once I got the sleep apnea treated with cpap not only did my brain fog get fixed, my coughing stopped as well. My appetite has never come back, but I'm overweight so that is probably a good thing.

I struggled hard, and cried a lot thinking I'd spend the rest of my life sick and exhausted. But when I heard that long covid lasts for up to 18 months in some people that gave me hope because it meant some people suffered as long as I did and then did get better. Fortunately I did too.

I hope you get better, too. The odds are that you will.

The Ngorongoro crater is only 7,500 feet above sea level. Where were you staying that was “very high altitude”?

[Anonymous]

Anonymous wrote:

Anonymous wrote:We’ve struggled to get back to normal after long COVID.

I’d love to hear what’s worked to get better.

Ugh, I'm sorry. I struggled for quite a while with long Covid but I'm better now.

I got Covid in October of 2022, most likely on a long flight to Africa. I got very sick while visiting the Ngorongoro Crater, and the doctor I saw a few days later when I got to Zanzibar told me I'd had HAPE (high altitude pulmonary edema) while staying at Ngorongoro (we stayed at very high altitude). I probably did have HAPE (very, deadly, btw), but probably was predisposed to it because I had Covid, which I didn't know. I saw that doctor, a Tanzanian doctor, via telehealth while staying at a resort and it didn't occur to her or to me that I had Covid. So I didn't get treated or even tested even though I was having pretty extreme shortness of breath (at one point I tried to walk to the restaurant at our resort and literally collapsed to the ground) and fatigue that kept me in bed even though I was on vacation. I had zero appetite and only ate to be polite to the resort chef who made me special stuff. With HAPE, that shouldn't have continued after I got down to sea level; but it did. Didn't figure out it was Covid until my DH turned up sick on the flight home (yes, I'm pretty sure we gave at least some of the people in that business class cabin Covid, and yes I feel badly about it) and we tested positive when we got home. I was coughing like crazy.

I didn't stop coughing and wheezing for almost a year and half. Had terrible fatigue and brain fog. I was seen in the Medstar Long Covid clinic at about the 8-month mark. The neurologist I saw got me a sleep study and it turned out the brain fog was sleep apnea. She said that although the reason why isn't apparent, there has been a big increase in diagnosis of sleep apnea in long covid sufferers. Once I got the sleep apnea treated with cpap not only did my brain fog get fixed, my coughing stopped as well. My appetite has never come back, but I'm overweight so that is probably a good thing.

I struggled hard, and cried a lot thinking I'd spend the rest of my life sick and exhausted. But when I heard that long covid lasts for up to 18 months in some people that gave me hope because it meant some people suffered as long as I did and then did get better. Fortunately I did too.

I hope you get better, too. The odds are that you will.

Thank you. This gives me hope!

OP

[Anonymous]

Anonymous wrote:Honestly, just time and pushing forward. I had a long slog for about 9 months. Two years out the only remaining symptom is tinnitus 24/7. I try not to focus on it because if I do I will go insane.

Yeah, I have hearing loss and tinnitus.
I assume I’ll remain partly deaf and hope it doesn’t get worse.

OP

[Anonymous]

Anonymous wrote:My husband has had it since his “mild” case of COVID in June 2022. The usual lineup of symptoms.

MedStar’s clinic is good but there are no specific treatments for long COVID so they throw what they can at various symptoms.

He’s fully disabled—has not been able to work or drive since. Can’t be upright longer than about 45 minutes without issues. I’m standing on a CVS line for his meds now, actually.

I’m so sorry to hear he’s struggling like this.

OP