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AMA

I have long covid AMA

17 replies

FairTurtle · 11/07/2024 14:11

AMA.

OP posts:
CelesteCunningham · 11/07/2024 14:13

Sorry to hear that OP. What are your symtoms?

StopInhalingRevels · 11/07/2024 14:14

How long have you had it?

Do you still test positive? How do you know you still have it?

Binman · 11/07/2024 14:16

How were you diagnosed, what was the process?

FairTurtle · 11/07/2024 14:19

@CelesteCunningham Fatigue, orthostatic intolerance, heart rate regulation issues, breathlessness, etc. The key symptom is one called post-exertional malaise (PEM), which is a worsening of physical symptoms following exerting oneself beyond one's limits. That's really the kicker, and what makes this so difficult to live with.

OP posts:
FairTurtle · 11/07/2024 14:20

@StopInhalingRevels Just over 3 years. No, I don't still test positive. I don't have coronavirus currently. "Long Covid" is generally just what they call post-viral fatigue syndrome, for which covid was the trigger.

OP posts:
FairTurtle · 11/07/2024 14:21

@Binman It's a bit of a "dustbin diagnosis", tbf. I just stopped being able to function after covid. Had a bunch of blood tests, an ECG etc to rule out other things. When they came back negative, my GP said yep, it's probably long covid.

OP posts:
60andsomething · 11/07/2024 14:21

What treatment are you on? My friend with long covid still needs regular blood transfusions after 3 years.

Growsomeballswoman · 11/07/2024 14:22

Can you still work? Sounds horrible😥

FairTurtle · 11/07/2024 14:23

@60andsomething There's no approved treatment specifically for long covid, but doctors can prescribe drugs off-label, or treat specific symptoms. I'm on a medicine that lowers your heart rate (this helps with POTS, which is a co-morbid condition which makes your heart race when you stand up). I'm also on a bunch of specific supplements, as well as antihistamines for allergy-type reactions.

OP posts:
FairTurtle · 11/07/2024 14:24

@Growsomeballswoman I took 7 months off initially as I couldn't work. I went back after that, but I work solely from home, and start slightly later than usual. If I wasn't able to work from home, I wouldn't be able to work at all.

OP posts:
Lelivre · 11/07/2024 14:24

Was the active phase of the virus what you would describe as bad or was it a fairly mild case of Covid?

What helps you?

FairTurtle · 11/07/2024 14:28

@Lelivre It was so mild, almost to the point of being asymptomatic. I just chilled out at home and even did some light exercise in my bedroom. The aftermath was shocking, and left my life in total wreckage. I think I read somewhere that most people with Long COVID - not those with actual visible organ damage, but those with a post-viral fatigue type of illness - had a mild infection.

As to what helps me - it's hard to say. The key is just rest, rest, rest, don't ever overdo it or push past your limits. Other than that - drinking a ton of water, taking the few meds/supplement for specific symptoms (sadly none really help with the fatigue or exertion intolerance, but can help to sometimes just feel more "well" in myself on a day-to-day basis), and for me personally, trying to hold on to the hope that maybe one day, even if it's in 5 or 10 years' time, there'll be a breakthrough treatment that'll restore my - and millions of others' - quality of life again. I'd like to think that's not that far-fetched, but it's pretty hard to keep believing it at times. When I feel especially low, I just read some of the new and incoming research.

OP posts:
Growsomeballswoman · 11/07/2024 14:30

Do you have children, has it affected family life?

Binman · 11/07/2024 14:31

Thanks @FairTurtle I have an elderly friend who has been continually ill since he had Covid. In and out of hospital, numerous tests, vague results, numerous meds, no improvement but his GP says it’s not long Covid with no explanation why. Not sure why GP is reluctant to accept this.

FairTurtle · 11/07/2024 14:32

@GrowsomeballswomanI don't have children. I was 29 when I developed this, now I'm 32. I had a boyfriend at the time, of just over a year, but it didn't work out. To be honest, I don't think I ever will have children. I've thought about this a lot recently. Even if I fully recover, I can't imagine ever choosing to put my body through anything strenuous again. I do hope to find a partner one day though, but struggle to believe that anybody would really want to be with me, especially after any initial honeymoon period ends. I also don't blame them! Before all this, I couldn't imagine having a partner who wasn't active, healthy, and lived adventurously and somewhat spontaneously. Particularly given my (relatively) young age.

OP posts:
FairTurtle · 11/07/2024 14:33

@Binman The lack of understanding, disbelief and often even medical gaslighting that occurs with Long COVID, and ME/CFS, makes life even more difficult for people affected. So sorry about your friend. I hope he finds the support he deserves soon. If it's an option for him, I'd encourage you to advise him to see a private specialist with experience in post-viral illness.

OP posts:
Differentstarts · 11/07/2024 19:57

Same op it's been 2 years since I was hospitalised with covid ended up with asthma, pots, cfs and high temperatures which nobody can figure out. I now can only work part time now. It completely changed my life.

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