Long covid rare symptoms

Excuse my typos!!!

I had very early Covid and for years was told all my odd symptoms symptoms were Long Covid. It turned out I have ET, Essential Thrombocytosis which is a rare blood cancer, and POTS. Your symptoms are different than mine…

Whatever happens, don’t give up and don’t let anyone try to tell you it’s in your head! Finding the correct diagnosis is difficult and time consuming. When you don’t feel well it’s even harder.

Good luck.

have you seen this article?

Our study showed that olfactory and taste function significantly improved in patients with COVID-19. For all anosmia and dysgeusia cases who received fluticasone nasal spray and triamcinolone medications the recovery of smell senses and the taste was within a week.

The outcome of fluticasone nasal spray on anosmia and ... - PubMed

PubMed
https://pubmed.ncbi.nlm.nih.gov › ...

Thanks for sharing; posting the full text link to the article if anyone wants to take a look (seems to have gotten cut off for me): https://www.sciencedirect.com/science/article/pii/S019607092030586X

@cameralens that definitely sounds frustrating. I don’t experience those specific symptoms but I’m in a long COVID study and they always ask in the questionnaires about change in taste or smell, so I don’t think you’re alone. I have my fingers crossed another member may be able to relate and share their experience.

Is the burning a smell or even tingling pain or does it actual blister? I have had no smell post LC for 4 1/2 years now, occasionally smell things oddly but mostly just no smell. I average a smell a day, normally external environmental ones like a particularly mop ( presumably with its unique disinfectant etc) at the swimming pool, but can’t smell the water/ jacuzzi, shampoo/ soap etc. Weirdly very very rarely smell any food/ drink stuffs, or personal smells. Reason I ask about burning is I get sensation like burning in armpits…originally thought I’d got chemical on me somehow and kept washing them then realised it’s a nerve that gets triggered from spine, so could be a something perhaps relating to your upper spine that changes at night time when you for eg settle back on sofa watching Tv, or go to bed…. You can look up which group of nerves come out of which vertebrae and where exactly the nerves run… I’m doing the Italian researchers Glialia protocol of their powders under the tongue, alpha lipoic acid and smell training and after 2 months getting odd surprises of just catching fleeting smells. The fluticasone etc paper seems to be using very recent covid patients rather than long haulers ( sorry brain fog from LC means I have difficulty reading such papers now with any confidence!).

It's awful isn't it? I didn't get COVID until late March 2023 and with it symptoms, one of which was and continues: burning in my mouth and canker sore-like bumps in my mouth. My dentist (whose wife had similar symptoms w/ COVID but hers disappeared) can find no other reason for the continuation. One of my docs prescribed a mouth wash but it doesn't 'go' without great difficult to the area of my mouth impacted (lower jaw and upper right cheek, with some on the left.) It also left my mouth totally numb for too long.

Not exactly what you are experiencing but with similar symptoms. I will see an ENT in a few weeks because of other symptoms that are ENT related and didn't start til COVID.

My greatest frustration is that even the long-COVID specialist I saw said, of course, "no one has presented with those symptoms before" and explaining I'd seen posts here and read medical research papers that did show these, didn't seem to grasp that we should look more into it!

We will all continue to astound the medical community because they are not digging as much as we patients are.

My hope is you and all of us are being the groundbreakers for the next wave.

You’re right, the fluticasone paper was done in people who had recent COVID infection and loss of smell, but I was just posting the link because the in the original post put up by someone else, the link was cut off.

I have heard of others trying smell retraining therapy. It was developed for people who lost sense of smell after a viral infection, but this was preceding the pandemic so I’m not sure if there are recent studies but it is relatively easy to reproduce at home.

Basically, you sniff four different scents (usually essential oils) one after the other twice a day for a few weeks, and then rotate them out. It’s based on the idea of neuroplasticity, so retraining the nerves and central nervous system.

This explains it in overview: https://www.enthealth.org/be_ent_smart/smell-retraining-therapy/

And more detailed steps here:
https://mydoctor.kaiserpermanente.org/covid-19/smell-retraining-therapy-and-long-covid
I can definitely relate to the brain fog. I just feel uncomfortable sharing random advice without giving people a way to trace back where it came from if they’re interested in further research >_<

Yes that’s the smell training bit of the protocol but the other bit is a modified very fine PeaLut supplement designed to pass over from mouth to brain, thus its name Glialia based on the brain’s immune system ‘bits’( brain won’t come up with name I want so forgive unscientific ‘bits’!) , then ALA added which I know from extended smell loss well before Covid is used to limit inflammation in the nose. It’s Italian research originally being used for other brain diseases to pass from ‘body to brain’ as lots of drugs don’t. There are research papers on it by Prof Arianna di Stadio.

It's a general hot sensation. Almost like breathing in hot coals with maybe a tinge of hot sauce. I do have a slight diminished taste and smell but can taste well enough to know what I'm eating and enjoying food. Maybe this is me new normal?!?! If this is the worst I'll ever feel, I'll take it!

I hear you about how the medical profession doesn't know what to do with us! I'm not desperate for relief, just becoming impatient with the these symptoms and lack of info.
But what I didn't express in my original post was that every time I get a significant flare up, like now, I think I have covid again!!! I have compromised in laws and a spry 88 year old dad. The last thing I want is to infect them should I have covid again. I've tested so many times!