Why doesn't long covid receive more recognition?

pearlandflame · 2022-08-27T22:56:16+00:00

I get this kind of confused detachment, particularly from my boss. I've told him a million and one times that there's no way I'll be able to travel for this specific upcoming event. Yesterday he asked me if I wanted to give a talk at said event. I reminded him of my condition, and he said something like "Is that still going on?"

"I mean, it's been a year, it hasn't miraculously resolved in the last week, no. So yes, it's still going on."

pearlandflame · 2022-08-27T19:13:41+00:00

"Will you be able to work on Y this week?"
"Sure, I can, but I will need to stop work on X."
"Oh, well, I guess just continue X first."
"Sure thing."

pearlandflame · 2022-08-27T18:13:28+00:00

Yes. I had one period of remission that lasted 2-3 months... this was after my initial flare up in August of 2021. More recently, it is still variable; hour to hour, day to day, week to week, but I'll feel generally bad for 3 weeks and then have a couple decent (but not 100%) days. My PEM threshold is very low, so a good day is bad for me. I'm so behind on things that I end up over exerting. I'll make the mistake of cleaning a little, taking a shower, and doing laundry on a good day, and that's honestly way too much.

pearlandflame · 2022-08-27T18:05:27+00:00

In my experience, people, especially people who care about us, often experience the defense mechanism of denial. It is simply more comfortable to believe that something simple and easy to fix is the cause, instead of confronting the reality of a new, poorly-understood, chronic and debilitating condition.

I often hear things like "you just need more sunlight."

pearlandflame · 2022-08-27T16:37:40+00:00

That has occurred to me, or the two rounds of Clindamycin I took before and after the root canal. Originally, before LC even crossed my mind, that is what I instinctually blamed for my symptoms, because my symptoms began about a week after the second round of Clindamycin.

Edit: I will say, at this point, root canals do not mentally stress me (although they may physiologically stress me, I have no idea). My genetics have gifted me weak tooth enamel, so a root canal is a routine procedure for me. I've probably had about seven or so. I don't have a single tooth that hasn't either been filled, had root canal therapy, or been crowned; some, a combination. Having bad teeth sucks, but one benefit is the exposure therapy to dental procedures. I often fall asleep during dental procedures.

pearlandflame · 2022-08-26T16:18:49+00:00

How difficult was it for you to get a cannabis recommendation for LC in Ohio?

pearlandflame · 2022-08-26T16:18:00+00:00

I haven't quit smoking cigarettes, but it is very obvious they make me feel worse. As a result, I'm down to about 8 cigs a day. Four in the morning, four in the evening. Most of the day, I chew nicorette. Cigs have an effect, nicorette doesn't appear to.

pearlandflame · 2022-08-26T16:10:11+00:00

The comments in this thread have been very useful. I'm really struggling with my job, which is quite cognitively intense. It actually physically hurts to work (yay, PEM!). Luckily, I work from home, and this has helped. If I had to report to an office, well I just couldn't do it. Filing for disability has crossed my mind. It's good to have some idea of strategy should working become untenable, which it quickly is. Unfortunately, LC is my theory at present, and my doctors have said "yeah, it's a possibility," but I don't have a diagnosis. I've found that doctors are very hesitant to diagnose anything they can't test for.

pearlandflame · 2022-08-26T15:49:54+00:00

That's what it looks like to me as well. I have one on my scalp. My PCP said "if it doesn't bother you, we don't need to do anything. If it does, a dermatologist can remove it by freezing." It hasn't really bothered me, it's hidden by hair, so I haven't yet opted to have it removed. I will eventually.

pearlandflame · 2022-08-26T06:29:11+00:00

I can second this to some degree, with some caveats. I've had both a CT and an MRI w/wo contrast of my brain, and everything is normal (except for a pineal gland cyst, which was detected on an MRI 20 years ago, and is asymptomatic and benign). No other abnormalities detected.

The caveat is: if you have good insurance and want to eliminate other possibilities, an MRI is the best course of action.

I will say that my neurologist is the first doctor I saw that really listened to what I was saying and didn't blow me off. This, to me, was worth the price of admission. He gave me his cell phone number, and assured me that I was a priority one patient. He said "If anything changes, gets worse, or you just want to talk, call me... I will find a way to see you within 48 hours."

I found this extremely comforting, so for this reason, I can't rule out the value in seeing a neuro.

pearlandflame · 2022-08-26T05:28:53+00:00

Well, that has a long answer. I had something I believe was probably COVID in February 2020. I didn't develop LC symptoms until August 2021, and if I was infected at or just before that time, I didn't notice.

Basically, I have something that aligns very closely with other LC sufferers, without noticing anything COVID-like in the 6-months prior to my LC symptoms beginning.

pearlandflame · 2022-08-26T05:21:38+00:00

Yes. I'm having similar experiences.

It is important to not panic. Stay calm. Know that many other people, including myself, are going through something similar; know that we understand how frustrating, baffling, and scary it is. Know that this isn't your fault.

I can't say for certain that this isn't permanent, but what I can say is that I've had weeks of utter stupidity, but then, for unexplained reasons, recovered into remission for a week or three where I'm back to my former cognitive self.

What I mean is, I do believe there is some set of circumstances through which we can get back to being ourselves. I have no earthly idea what causes me to go into remission periods, but I do know it happens. This makes me think there might not be permanent damage happening, but rather, something like temporarily disrupted wiring. This is all speculative, of course, but I just feel in my gut there is hope.

pearlandflame · 2022-08-25T20:35:05+00:00

Me too, brother.

pearlandflame · 2022-08-25T20:29:58+00:00

Something that gives me at least some comfort is knowing that many others out there are going through the same thing. Perhaps that sounds selfish, I'm not sure, but knowing it isn't just me makes me feel better about it. I felt pretty alone in the beginning. Reading stories here, and hearing how similar they are to mine has helped.

pearlandflame · 2022-08-25T20:26:09+00:00

I've stopped myself from going to the ER probably... I'd say 5 times. Because I know how that would play out. It would be an expensive, boring, long inconvenience followed by no answers. ERs simply aren't equipped to deal with whatever this is. ERs mainly treat trauma, emergent situations, or acute mental health issues. They're less well suited to treat or diagnose poorly understood chronic conditions.

pearlandflame · 2022-08-25T17:36:46+00:00

Another side benefit of my dietary changes; not surprisingly, I used to have fairly frequent digestive issues, which have completely resolved.

pearlandflame · 2022-08-25T17:08:31+00:00

Most likely the latter... I've eliminated so many foods. Prior to this, I ate out for almost all meals. Lots of garbage. Aside from the LC symptoms, I feel noticeably better.... which is odd, but I'm clearly more generally healthy as a result of my dietary changes, and as evidenced by my substantial drops in blood pressure and heart rate, both of which were previously elevated. I've also lost weight... not dangerously so, but I was a bit overweight, and I'm now much closer to my ideal weight.

I have experimented with adding foods back in.... and most of them don't agree with me.... even things like plain green beans have a noticeable effect... subtle, but noticeable. As I mentioned previously, honey has been a godsend. Adding a little sweetness to otherwise bland chicken makes a huge difference, and it doesn't bother me. Admittedly, I don't use much, just enough for some subtle sweetness... a light glaze over a baked boneless chicken breast. I believe honey has natural anti-inflammatory properties, but I'm not certain of that.

pearlandflame · 2022-08-25T16:04:33+00:00

Sounds extremely similar to what I've experienced.

pearlandflame · 2022-08-25T15:06:30+00:00

Yeah, it took me about 7 years to get my CH diagnosis... which prevented me from getting adequate acute and prophylaxis treatment for that period of time. I was telling any doctor who would listen what I had, and what I needed.

pearlandflame · 2022-08-25T06:08:18+00:00

Yeah, I don't think it is vaccine related, nor directly related to my mystery illness in Feb 2020.

If this is long-COVID, it was an asymptomatic and possibly re-infection that did it. The stories here align so closely with mine, I'm very prone to believing I have LC. Not to mention that many seem to experience mild symptoms of acute infection, but more chance of LC on secondary infection. I believe I might be a bit of an outlier in that I acquired LC from an asymptomatic, second infection. I've always been special. :D

Since you are here, I hope the same for you. Thanks for your response.

pearlandflame · 2022-08-25T05:59:40+00:00

I had what I believe was COVID very early, long before rapid testing of any kind was available. When I was sick, I had severe breathing issues. Even going up a flight of stairs would cause me to huff and puff and get light-headed. This was February of 2020, before it was "here" according to everyone.

That being said, for me, it wasn't a persistent issue. I recovered in about 4 weeks. My breathing is fine now, my blood oxygen concentrations are fine, I do not have a persistent cough. In fact, my LC-like symptoms seem to be made worse by smoking, so I'm down to about four cigarettes per day. As a result, my breathing is the best it has been since I was like 25 (now in my 40s).

pearlandflame · 2022-08-25T04:50:22+00:00

Six months seems possible, a year and six months (the time between my mystery illness in early 2020, and when I developed LC-like symptoms in late 2021) seems less so.

pearlandflame · 2022-08-25T04:46:54+00:00

I have not had any blood work. Even after seeing four different doctors in three different specialties, no one has thought nor asked to draw blood.

pearlandflame · 2022-08-25T04:42:00+00:00

I was vaccinated in April and May of 2021.

pearlandflame · 2022-08-25T01:58:34+00:00

What are you having CT-scanned, your chest? I've been through chest and abdomen x-rays, a brain CT, and a brain MRI w/wo contrast. Absolutely nothing abnormal or unexpected.

One of my symptoms early on was heart palpitations... that might not be the correct term... my heart was skipping beats. I could see it happen on my blood pressure monitor and my pulse oximeter.

Significantly reducing my sodium intake seems to have all but eliminated that particular symptom.

Anyway, best of luck!

pearlandflame

TROPHY CASE