Thoughts on long-term COVID consequences, including ME/CFS possibility?

wherearemypillows

wherearemypillows

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78
Location
Alberta, Canada
At first I was being extra careful to take precautions due to being immunocompromised by Rituximab, but in the past few weeks I've become more and more alarmed by reports of long-term coronavirus consequences. The extreme fatigue and cognitive decline being suffered by some COVID "long-haulers" reminds me of how my chronic illness began nearly 6 years ago, and I would be devastated to see this needlessly happen to someone in my circle (well really anyone, for that matter).

I collected my thoughts in a blog post, which weaves together relevant COVID research with a personal narrative of how my own illness began. I'm sharing it here because others have found it helpful in trying to explain their coronavirus concerns to lax friends and family (especially in the lead up to the pressure to attend 4th of July celebrations). I think some of you here may be in a similar position, and find value in taking a look.

Let me know if you've got any thoughts, as I'm curious to know how others in a similar health boat are feeling during this pandemic :thumbsup: hope ya'll stay safe and well out there in the months ahead.
 
Wolfcub

Wolfcub

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It is very very horrible. Even those who weren't ventilated have long-lasting symptoms sometimes. I was keeping up with Reddit posts and there are a lot of ordinary (quite young) people who suffered effects for weeks running into months. People who were fit and well before.

In my own case, I actually felt much much better for a good 2-3 weeks after the virus appeared to have gone. But after that my usual baseline did come back after all, with one or two niggling symptoms, but it's hard to discern if they are from the virus, or part of the ME/CFS. Neither symptom is killing me, but more of a nuisance. It seems I have developed a very mild form of ibs which comes and goes. Yet there's no sign of inflammation (re: tests)
That was present 2 years ago but only for about a week. Now it's more or less constant. So is that from the virus? Or just one of the joys ME/CFS has for us all?

Also I get heart palpitations but also got those on and off for 2 years. No other worrying heart symptoms though.

But all in all, I think I am more or less how I was before. I expected to be completely done for if I caught the virus.... But I could be a very unusual case, and others could be affected badly. Who's to say?
 
ljimbo423

ljimbo423

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Wolfcub said:
In my own case, I actually felt much much better for a good 2-3 weeks after the virus appeared to have gone.
Click to expand...

How long did the viral infection last? I ask because I think I might have it. Been sick for 6 days. Not really bad but I do feel miserable. Still doing a trimmed down version of my daily routine.

I haven't had a cold or flu in 15 years, so that don't seem likely, especially since it's the middle of summer. And my ME/CFS flares never last more than a day and haven't for many years. So it seems like covid 19 is a real possibility.

It started 2 days after a trip to the grocery store.
 
ljimbo423

ljimbo423

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andyguitar said:
Can you not get a test @ljimbo423 ? From the news i've seen from the US covid is exploding there.
Click to expand...

I probably can get a test but I don't know how that would really help. Other than possibly not needing to self-isolate, if I was negative. My symptoms are mild but a pita. I'm not even in bed. Just feel like I have a mild flu.

Covid is exploding here, bigtime.
 
wherearemypillows

wherearemypillows

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78
Location
Alberta, Canada
andyguitar said:
Some of the after effects of covid @wherearemypillows are due to the long spells in intensive care/ on ventilation that many have faced. I saw an interview with a patient who spent about a month on a ventilator. He was sedated during the whole time. It sounds very,very horrible.
Click to expand...

Yeah, I've read that too. I think something that's easy for the average person to overlook is that discharge from hospital doesn't equal the ability to just join back into normal life. There's often an adjustment period just to get back on your feet.

Wolfcub said:
It is very very horrible. Even those who weren't ventilated have long-lasting symptoms sometimes. I was keeping up with Reddit posts and there are a lot of ordinary (quite young) people who suffered effects for weeks running into months. People who were fit and well before.

In my own case, I actually felt much much better for a good 2-3 weeks after the virus appeared to have gone. But after that my usual baseline did come back after all, with one or two niggling symptoms, but it's hard to discern if they are from the virus, or part of the ME/CFS. Neither symptom is killing me, but more of a nuisance. It seems I have developed a very mild form of ibs which comes and goes. Yet there's no sign of inflammation (re: tests)
That was present 2 years ago but only for about a week. Now it's more or less constant. So is that from the virus? Or just one of the joys ME/CFS has for us all?

Also I get heart palpitations but also got those on and off for 2 years. No other worrying heart symptoms though.

But all in all, I think I am more or less how I was before. I expected to be completely done for if I caught the virus.... But I could be a very unusual case, and others could be affected badly. Who's to say?
Click to expand...

Thanks for sharing your experience. I'm glad you were flatlined by the virus! It seems that it hits people somewhat randomly in its severity. I just don't want to take any chances since we don't know how to predict exactly how severely each of us would respond to being infected.
 
wherearemypillows

wherearemypillows

Messages
78
Location
Alberta, Canada
ljimbo423 said:
That's a good point. I just might make a phone call. The other problem though is I don't have a car and I don't think they deliver.:lol:
Click to expand...

I completely get the desire not to want to fight the public and system just to get a test, especially if your system seems to be handling whatever it is you contracted ok. Here in Texas waits are huge, and the cost isn't worth it to many people. I wonder how much higher the numbers would be if tests were plentiful and free...
 
D

dahsar

Messages
58
Just a thought.

After the inflammatory stage, I believe I developed an autoimmune disease. I'm going to see if I can do the IVIG + rituximab.
 
Last edited:
D

dahsar

Messages
58
wherearemypillows said:
At first I was being extra careful to take precautions due to being immunocompromised by Rituximab, but in the past few weeks I've become more and more alarmed by reports of long-term coronavirus consequences. The extreme fatigue and cognitive decline being suffered by some COVID "long-haulers" reminds me of how my chronic illness began nearly 6 years ago, and I would be devastated to see this needlessly happen to someone in my circle (well really anyone, for that matter).

I collected my thoughts in a blog post, which weaves together relevant COVID research with a personal narrative of how my own illness began. I'm sharing it here because others have found it helpful in trying to explain their coronavirus concerns to lax friends and family (especially in the lead up to the pressure to attend 4th of July celebrations). I think some of you here may be in a similar position, and find value in taking a look.

Let me know if you've got any thoughts, as I'm curious to know how others in a similar health boat are feeling during this pandemic :thumbsup: hope ya'll stay safe and well out there in the months ahead.
Click to expand...

I read your blog post! Excellent writing.
 
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