covidlonghaulers

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The original was posted on /r/covidlonghaulers by /u/Old_Actuary_3472 on 2023-07-31 04:29:24.

I know doctors don’t really know yet but I’m still confused if CFS stemming from long covid is the same as original CFS.

It’s been two and a half years for me now dealing with these symptoms and sometimes I remember how long it’s been and lose hope that I will get back to my old self. The PEM just never goes away. No matter how much I rest. And the brain fog and fatigue are life changing to say the least.

I’m a person like everyone else that has things to do and it feels so unfair I can’t do them. Not to mention being able to do activities that bring enjoyment to my life.

Seeing 5% as the recovery rate is hard to wrap my head around. I dont know how people with CFS have lived like this for so many years. Life feels pointless.

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The original was posted on /r/covidlonghaulers by /u/RichAf26 on 2023-07-31 00:34:20.

The massive anxiety/panic & depression I had the beginning of Covid for months is now back after not having it for like 10 months. It is so brutal. I literally panic just walking to the kitchen sometimes. I can’t go anywhere. It is unbearable. I thought it was gone for good but it feels almost as bad as the beginning of longhaul anxiety. Why would it come back after being gone for months?

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The original was posted on /r/covidlonghaulers by /u/CH2599 on 2023-07-30 23:41:54.

As the title states

I’m looking to see if anyone from UK has been successful in calming pip and how they managed to do so.

I have no formal long covid diagnosis, but it’s put on all of my sick notes as “long covid under investigation”. I also have a crap ton of history over the past year of all my visits due to the illness, plus a counsellor stating I do not need his help as he also thinks this needs further investigation physically (nice not to be gaslight for once).

From what I’m seeing the chances of me getting accepted for pip isn’t looking great, and I desperately need it to continue being able to live/function, work is most certainly not an option at the moment.

Any advice or suggestions would be appreciated!

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The original was posted on /r/covidlonghaulers by /u/SanaFraley on 2023-07-31 04:56:28.

One of the crappy parts about being a dude...once you lose your masculinity you are dust.

She would have left if I stopped working anyways, which is inevitable. Gotta be a wallet!

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The original was posted on /r/covidlonghaulers by /u/DarthZiplock on 2023-07-31 02:49:38.

Just looking at all the research coming out that says long COVID can involve pretty much any tissue in the body.

Coupled with studies finding that the spike protein behaves an awful lot like a neurotoxin…

Can every symptom reasonably be attributed to spike protein persistence at the roots?

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The original was posted on /r/covidlonghaulers by /u/Intelligent_Dead1 on 2023-07-31 01:07:00.

I’m currently in the process of figuring out what illness I have and the doctors keep saying long covid after all my test are normal and unremarkable.

I’ve read that post viral syndromes are usually only meant to last a year and are non progressive and here I am with over 40 symptoms that are worsening with all normal test results . What are some of you guys opinions? I’ve been seeing every type of specialist and every single test I’ve had is normal . Not knowing what’s wrong is killing me faster than my symptoms .

The worse problems I have are muscle pain / weakness , impending doom mixed with adrenaline dumps daily , dry mouth , headaches , erectile dysfunction , fatigue and heart palpitations also stomach pain and constipation

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The original was posted on /r/covidlonghaulers by /u/TheproducerPHD on 2023-07-30 20:58:42.

Hey, does anyone know how to go about disability or how to get aid with money in the USA.

I haven’t worked in 8 months and I’m trying to figure out money. Selling everything I have. Luckily I’m still young enough and on parents health insurance.

Please let me know! Any help or suggestions are great.

I could probably only work online 5 hours a week max rn. So please let me know!

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The original was posted on /r/covidlonghaulers by /u/TTx_333 on 2023-07-31 00:20:14.

Greetings All,

As the title suggests, I currently have ground glass nodules in my lung, one is

7mm and two others are 2mm. These haven't grown or shown any signs of anything

other than scarring, presumably damage from COVID-19 which I've gotten repeatedly

over the last few years, although the lung with the larger node is showing loss of volume).

This recent bout was in December. Its been 8 months and even

though I had almost 3 weeks where it relented, the same cluster of symptoms seems

to have returned :

• Gasping for air fairly often

• Serious 7/10 - 9/10 pain headaches

• Tingling in the limbs

• Dizziness, Extreme Fatigue, Post-exertional malaise.

(This set of symptoms tends to "hit hard" relent, and repeat.. for years)

I've done some reading into how series these ground glass cysts can become (fibrosis,

cancer, ILD, etc) and also how these can be benign and go away on their own. The last

lung CT showed no growth and no artifacts of fibrosis or cancer.

The doctor didn't seem concerned enough for a follow up, just to repeat the control measurement within a year. At my last meeting with him, he suggested its a fairly normal occurrence from COVID and was nothing to worry about, assuming follow up scans were normal.

Everything I'm reading suggests that fibrosis is a possible but much less likely outcome,

but nothing is really clear to me. The stuff I am reading is really alarming me.

• CAN these GGN's go away on their own, even years after multiple COVID infections?

• Are the constantly recurring symptoms (which are themselves really worrying) just

normal post-COVID stuff? A lot of people say this eventually remits on its own and it just

takes patience, pacing and time.

• Took a recent COVID test to see if it was a re-infection. Does not seem to be the case.

• I've read getting another dose of vaccine can help - would this be wise to try? What

about hyperberic treatments?

I know nobody can offer medical advice but I really just wanted secondary opinions on

anyone who might know more or have a better idea of what could be happening here.

Much Appreciated.

TT

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The original was posted on /r/covidlonghaulers by /u/No_Mathematician2983 on 2023-07-31 01:30:01.

This may be hard to explain I’m 18 months into long Covid never had this problem before but just started recently feeling like at times it is harder to breath and I check my O2 and it’s 96-100% every time and I I also will get theses random well the past 2 days random feelings were it’s a bit more intense it feels like something is squeezing my right lung the lung don’t hurt but like I can’t fill it up like my airways are restricted and I don’t know what this could be them episodes will last about a minute long it makes my heart go up because I get so damn scared and I don’t even have a idea of what it is or where to start chest X-rays look good bloods good O2 good anyone have advice non vax 26 year old male also pretty healthy before Covid 6 ft 170 lbs not over weight any advice would be huge thank you all 🙏

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The original was posted on /r/covidlonghaulers by /u/Jjbates on 2023-07-30 23:29:01.

Hello all,

I wanted to pass along this company / device that my long Covid Clinic sent me. This would be for those of you with dysautonomia and lots like symptoms. No prescription needed.

No scam here. This is from my team at Ohio State. They seemed excited about its efficacy and so I wanted to share.

Take care of yourselves.

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The original was posted on /r/covidlonghaulers by /u/Prestigious_Wait3813 on 2023-07-30 19:30:29.

Has anyone else had a bad reaction to iron? It’s making me feel sick, like REALLY sick, my doctor told me to take 325mg a day bc I am deficient, but even the smaller amounts are making me feel horrible. Body aches, pins and needles, headache, can’t sleep at all, more anxiety. Any else?? Or anyone know why?

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The original was posted on /r/covidlonghaulers by /u/Wild_Citron1234 on 2023-07-31 00:15:23.

Luckily people and docs always did believe that I'm severely sick, cause I faint and look sick. But until now there was no hard evidence, besides a tilt table test that showed I have severe POTS. I also had slightly elevated liver labs, anemia labs and low white blood cells. But besides that there wasn't much "hard evidence". I do have anaphylaxis and turn red thx to MCAS, so that was visible but no lab result...

Now I got some special tests back and well, I am appearantly as sick as I thought. My docs already thought that I had all of this, but they didn't have proof. My doc, a before CFS researcher, now a LC researcher, said I'm one of the worst affected she met so far and it felt horrible to hear, but also validating, maybe someone can relate? There were docs stating I should just stand up and walk more, train more...

Well it turns out I have an extensive mitochondrial dysfunctioning, lactic acidosis- and when I got tested I was as rested and "well" (meaning still bedridden, but didn't feel like actively dyjng) as possible and it was still high, it's probably way higher during pem, finally explaining my sometimes absolutely nonfunctioning muscles.

Neuroinflammation with neurotransmitters completely out of range, my dopamine, glutamate and gaba were through the roof, while my noradrenaline and Cortisol we're low. But I guess that's at least an explanation why I'm not anxious or depressed, with those gaba levels.. And the focal seizures I had and noone even tried to explain, cause everyone heard long covid and just shrugged their shoulders..

I have a leaky gut together with a dysbiosis, leading some gut bacteria to produce high toxin levels and appearantly my labs show signs of being poisoned. I also have high nitrosative stress labs and my kidney labs are not good too.

Plus my new food intolerances got confirmed, even though they now need more clarification, but I do have them, together with fat and carb malabsorption and insufficient digestion. Plus my inflammation markers are high.

I also have autoantibodies, but they aren't my primary problem according to the doc. But I wonder if the blood clotting ones do cause some problems in that department..

Has anyone else had this lab results? According to research most of them seem to be common in a subset if LC patients and my doc said the same. Mitochondrial dysfunctioning and gut dysbiosis are pretty common in her study, also the autoantibodies.

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The original was posted on /r/covidlonghaulers by /u/aviiiva92 on 2023-07-30 21:13:23.

Original Title: Suffering from neurological issues (neuropathy, "burning" in neck and head, brain fog) which is the worst from smells like gas station, fire smoke, perfumes, laundry detergent etc. Does somebody have similar experience?

Hi, would like to hear does somebody have the same experience and advice how to recover.

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The original was posted on /r/covidlonghaulers by /u/zakjaycee on 2023-07-30 20:57:59.

I had everything (fatigue, Brain fog, memory loss, anxiety, panic attacks, Persistent headache, squeezing head, insomnia, dizziness, derealization, visual sharpness and blurriness, photosensitivity, sensitive to sound. Rash. Used to wake up gasping for air sometimes, Persistent cough. Thermal perception messed up (feeling like its too hot). Eye has extremely prominent blood vessels, vision loss at night/loss of detail at night. Balance feels off. Angina after waking up from sleep (noticed mid September 2022). Massive irritation and discomfort focusing at objects long distance. Feel off balance and have spatial issues. Adrenaline dumps dysautonomia.). Remaining symptoms are brain fog and headache now. Chronic fatigue is still there but significantly better. I'm able to exercise even with the squeezing head sensation. Anyone able to get rid of these 2?

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The original was posted on /r/covidlonghaulers by /u/GimmedatPHDposition on 2023-07-30 21:05:58.

I had previously mentioned the preprint .

The paper has now been published: .

Background

Post-COVID-19 syndrome (PCS) is a lingering disease with ongoing symptoms such as fatigue and cognitive impairment resulting in a high impact on the daily life of patients. Understanding the pathophysiology of PCS is a public health priority, as it still poses a diagnostic and treatment challenge for physicians.

Methods

In this prospective observational cohort study, we analyzed the retinal microcirculation using Retinal Vessel Analysis (RVA) in a cohort of patients with PCS and compared it to an age- and gender-matched healthy cohort (n = 41, matched out of n = 204).

Measurements and main results

PCS patients exhibit persistent endothelial dysfunction (ED), as indicated by significantly lower venular flicker-induced dilation (vFID; 3.42% ± 1.77% vs. 4.64% ± 2.59%; p = 0.02), narrower central retinal artery equivalent (CRAE; 178.1 [167.5–190.2] vs. 189.1 [179.4–197.2], p = 0.01) and lower arteriolar-venular ratio (AVR; (0.84 [0.8–0.9] vs. 0.88 [0.8–0.9], p = 0.007). When combining AVR and vFID, predicted scores reached good ability to discriminate groups (area under the curve: 0.75). Higher PCS severity scores correlated with lower AVR (R = − 0.37 p = 0.017). The association of microvascular changes with PCS severity were amplified in PCS patients exhibiting higher levels of inflammatory parameters.

Conclusion

Our results demonstrate that prolonged endothelial dysfunction is a hallmark of PCS, and impairments of the microcirculation seem to explain ongoing symptoms in patients. As potential therapies for PCS emerge, RVA parameters may become relevant as clinical biomarkers for diagnosis and therapy management.

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The original was posted on /r/covidlonghaulers by /u/stubble on 2023-07-30 21:04:46.

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The original was posted on /r/covidlonghaulers by /u/notyourname584 on 2023-07-30 20:30:58.

I went to the long COVID clinic and the Doctor mentioned that they're finding a lot of people with long COVID have type A personalities and really ambitious people that end up getting struck down with this. Has anyone else heard similar? Or have any studies been carried out to look into this? Being type A myself, I am very curious!!

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The original was posted on /r/covidlonghaulers by /u/GA64 on 2023-07-30 19:58:03.

Do you find that your long COVID symptoms such as brain fog and fatigue constantly get better then worse again in a repeated cycle, over a period of around 3 or 4 days?

I find that that I will suddenly get a good day, where my brain fog and fatigue seem much improved, and then I think I have left LC behind to an extent, only to find that a day or two later I get substantially worse again. And this cycle of getting better then worse keeps repeating.

This cycle has nothing to do with PEM, since my daily exertion is very similar every day. And in any case, I am always aware when excess exertion has triggered a worsening of symptoms leading to PEM.

The cycle I experience is not PEM, and does not appear to be linked to any external factors or medications. This cycle seems like some intrinsic phenomenon of my long COVID itself.

I wish I could uncover the mechanism of the cycle, and figure out the reason why I get these up and down swings in symptom severity, over a repeating cycle of around 3 or 4 days.

Prior to catching COVID over a year ago, I had had ME/CFS for a number of years (originally triggered by an enterovirus infection), and so I am used to the brain fog and fatigue of ME/CFS. But I never had any ups and downs with my pre-existing ME/CFS; my ME/CFS symptom severity would normally remain constant from day to day (except if I had PEM, of course, or if I took some new medication that made me better or worse).

This cycling of symptom severity only appeared once I developed long COVID on top of my pre-existing ME/CFS.

Do any other long COVID patients experience a similar cycle of symptom severity over several days? And if so, do you have any theories about what might cause the cycles?

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The original was posted on /r/covidlonghaulers by /u/sighing_flosser on 2023-07-30 17:04:31.

If so, how was your experience?

Any symptoms re-emerge or was it smooth sailing?

I'm feeling much better these days and have been on 4.5 mg for a year and a half.

Quick google search says no need to taper due to such a low dosage, but feel like we are the exception to every rule haha

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The original was posted on /r/covidlonghaulers by /u/Aggressive-Toe9807 on 2023-07-30 13:51:56.

I’m personally a big fan of NotRecovered and MillionsMissing who really focus on using the names and faces of people in their campaigns and are very visual with their approach, but open to other suggestions.

I mean, do we push for biomedical research? Do we direct citizens to a specific website? Do we just keep it simple with a striking image and a slogan? Do we use it as a ‘warning’ about Long Covid?

Please respond if you can and share ideas. A few people are working on a crowdfunding campaign to get some billboards up (starting in the UK) and just waiting on replies from some charities and well known advocates, but in the meantime would love to see as much ideas as possible!

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The original was posted on /r/covidlonghaulers by /u/Pablogelo on 2023-07-30 16:41:38.

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The original was posted on /r/covidlonghaulers by /u/CoyoteAffectionate47 on 2023-07-30 13:48:42.

I keep relapsing. Every time I get a little better and grow hopeful, something or the other happens which sends me back to being bed bound.

And every time it gets harder to get back up and try again.

Constant dizziness, tachycardia, pre-syncope every time I stand up, light and sound sensitivity right now. And I genuinely thought I was getting better before this crash.

I didn’t even do anything strenuous to bring this upon me, one day I was fine and the next day here.

Losing hope and reasons to keep trying.

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The original was posted on /r/covidlonghaulers by /u/fitz177 on 2023-07-30 16:03:28.

Like , has anyone been actually cured fully ? Are we all just going around and around spending money on supplements that don’t really work? I feel like one thing heals a bit( or else a different pain overwhelms that pain and it all just a vicious circle in the end! ) has anyone actually had all the symptoms and are completely back to normal again after all this? To me it feels like I’m just struggling all the time , no mater what I do or take , the end of this all is nowhere to be seen in my eyes anyways!

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The original was posted on /r/covidlonghaulers by /u/Finitehealth on 2023-07-30 14:40:21.

I caught LC 8months ago, but can’t seem to get that last 15%. Is this residual effect from lung damage or is it still possible to recover fully? Besides supplements, healthy food, what else to try?

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The original was posted on /r/covidlonghaulers by /u/Ok-Temporary1726 on 2023-07-30 14:14:28.

And does anyone know why this happens? I feel like the hormonal fluctuations are making the long covid worse.