1. < Post-COVID Recovery & COVID-19

When to accept permanent long covid?

Posted by gregorb @gregorb, 4 days ago

Had Long Covid for 11 months. Is there still a chance it could go away or is it time to accept as permanent. Have heard give it anywhere from 1 to 2 years. Any feedback on that?

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gregorb | @gregorb | 1 day ago
In reply to @lkirnbauer "First of all, I am so sorry you’re suffering for so long. I am going on..." + (show)
@lkirnbauer

First of all, I am so sorry you’re suffering for so long. I am going on 3 years in December with Long Covid, (no taste/smell, lightheaded and feel like I’m on a boat, tremors in my body if I overextend myself). I had more of the light headedness early on, now it is less often as I believe the water in my head is dissipating. I’ve had 2 brain MRI’s and it showed left sided swelling on my brain. The Chief Neurologist at Northwestern Chicago told me that this was something he thinks happened during childbirth. How he knows that, I don’t know! I believe it’s from long covid! I wish I had a magic wand to help you, but unfortunately, I don’t. He also told me that after 1 year of no taste/smell I probably won’t be getting those senses back. I pretty much walked out of there with no hope! I am a strong willed woman and am refusing to loose hope! Keep looking for web sites that are positive and keep hope alive for us living with Long Covid.

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So many unknowns. Keep fighting and refuse to lose hope. Best wishes.

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gregorb | @gregorb | 1 day ago
In reply to @srqqd "I am dealing with the same, and CFS baffles me...I'm just exhausted, but not all the..." + (show)
@srqqd

I am dealing with the same, and CFS baffles me...I'm just exhausted, but not all the time. Stressful situations seem to bring it on.
Chronic cough, muscle aches, brain fog are rotating symptoms that accompany the fatigue

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Yes. So baffling. This CFS.... one day, reading or a conversation can be exhausting. Next day, no effect after an hour of something physical. Don't understand why mornings symptoms are tougher than later in the day. Feel almost normal then. Guess I'll just take it as a win.

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froggiiii | @froggiiii | 1 day ago

Now a 72 YO female.
First Long COVID episode was January 2021. Spent 18 months housebound 2022-2023.
At this point my perspective is that I have a poorly understood ongoing condition.
I am functional, can do a couple outside activities 2-3 times weekly.
Fatigue is the remaining major symptom.
So I'm taking it easy and adjusting to make the most of my awake hours.

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ann728 | @ann728 | 23 hours ago
In reply to @diverdown1 "I am going on 3 years with Long COVID. I am not as sick as I..." + (show)
@diverdown1

I am going on 3 years with Long COVID. I am not as sick as I was the first year, but I still have symptoms daily. Some mornings are worse than others usually due to fatigue and post exertion malaise. That being said, I have wondered the same thing? I have found that I do what I can, when I feel like doing it and I usually pay the price the next day but when I stay in the day, mindful that this day, hour, minute is really all I have that helps with the acceptance in that moment. I went through a very hopeless period and there are still mornings that I feel that. I try to remind myself that it can always be worse and remember that I am not homeless, have food, and all basic needs met. I am not trying to make it sound easy, it isn't but after 3 years of this, I do still have hope and when I practice staying in the moment and not spinning out with fear about the future (because I have no idea what the future holds) it helps. I hope this makes sense? Thanks to everyone that posts here. This support group has helped a lot as well.

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Thank you for sharing.

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gregorb | @gregorb | 22 hours ago
In reply to @srqqd "I am dealing with the same, and CFS baffles me...I'm just exhausted, but not all the..." + (show)
@srqqd

I am dealing with the same, and CFS baffles me...I'm just exhausted, but not all the time. Stressful situations seem to bring it on.
Chronic cough, muscle aches, brain fog are rotating symptoms that accompany the fatigue

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To me stress seems to be the key to triggering so many symtoms. In my case many stress triggers have a limitation of time attached. I find limiting the amount of time I spend on doing something will lower my stress level. Slow down. Spread out the workload. I use 15 minutes with a timer.

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celia16 | @celia16 | 21 hours ago

I never had fatigue or brain fog as part of my LC, but I did have other things including nasal congestion, phlegm, drainage, nose running water…..but recently that has dissipated considerably! I’m cautiously optimistic. The only things I’ve done different is occasionally using Astepro nasal spray….like once every couple of days and using plain saline nasal spray twice a day. I’m so much better. I’m keeping my allergist appointment anyway. There is a 1 year wait list at Duke Allergy. 😧

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janetlbhughes | @janetlbhughes | 20 hours ago
In reply to @ann728 "What symptoms suggest microclots?" + (show)
@ann728

What symptoms suggest microclots?

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All the over 100 symptoms I have experienced may be related to microclots, I’m not sure. That’s something that may be in Dr. Vaughns articles. Right now, cross my fingers, all my symptoms, and I’ve had a lot, have gone away except sweating at night and maybe I’m still catching up with the cognitive loss. It’s amazing. Im still holding my breath that it lasts.

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ann728 | @ann728 | 18 hours ago
In reply to @janetlbhughes "All the over 100 symptoms I have experienced may be related to microclots, I’m not sure...." + (show)
@janetlbhughes

All the over 100 symptoms I have experienced may be related to microclots, I’m not sure. That’s something that may be in Dr. Vaughns articles. Right now, cross my fingers, all my symptoms, and I’ve had a lot, have gone away except sweating at night and maybe I’m still catching up with the cognitive loss. It’s amazing. Im still holding my breath that it lasts.

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Such wonderful news. Truly happy for you. Keep us informed.

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dmphillips | @dmphillips | 17 hours ago
In reply to @leo4404 "Hi, I had Covid the end of 2019, beginning of 2020. I had ( have )..." + (show)
@leo4404

Hi,
I had Covid the end of 2019, beginning of 2020. I had ( have ) long haul covid. My problem has been my Dr. s they treat my symptoms separately. No one sees the problem as just being one thing. Then there's the Dr's that say everything looks fine on your test, I'm not seeing anything. Then I doubt myself, am I crazy? The ringing in my ears that never stops, extreme fatigue. I don't go to Drs now, I have given up on even trying to see if anyone can help. When I have asked about long haul covid as being a problem, they tell me that maybe I should see if I can find someone who specializes in the long haul. I figure this is what I have to live with. I use to own a restaurant, now I can't even go into a restaurant. My business is gone, my husband has passed away. There is nothing left, unless you count long-haul covid.

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Where are you located? There are long haul clinics throughout the USA.
I had my first visit last week; I have seen more health professionals than I care to mention as we winter elsewhere and that is where I developed LC - so also have a medical team here (gastroenterology, cardiology, pulmonology, dermatology, allergy, ENT). We have a LC clinic here (Boise) and also have a few clinics in Arizona where we winter. As there is no “test” for long covid, getting an appointment is often self-reporting. The physician (internist) at the clinic here is helpful, including his team. He said he’s willing to try a large variety of therapies. He’s even had patients that make their own LDN (crazy) as it has to be made in a compounding pharmacy and can be expensive.
I find the most difficult thing about getting medical help is feeling well enough to get to the appointment or test. LC is a barrier to getting help - feeling so ill and gathering enough energy to get out the door.

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srqqd | @srqqd | 16 hours ago
In reply to @gregorb "To me stress seems to be the key to triggering so many symtoms. In my case..." + (show)
@gregorb

To me stress seems to be the key to triggering so many symtoms. In my case many stress triggers have a limitation of time attached. I find limiting the amount of time I spend on doing something will lower my stress level. Slow down. Spread out the workload. I use 15 minutes with a timer.

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Thanks so much...it's mostly people and technology for me🙄

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