Long covid rare symptoms

I would suggest it’s a physical nerve problem then …write a diary for a few weeks seeing if when you get it you are using your neck in any particular way. Check which nerves re mouth etc area relate to which vertebrae. I get my spine very gently manipulated every 6 or so weeks by a McTimoney trained chiropractor…stops a lot of my neck and peripheral problems…might be worth considering?

So interesting!!!! I'm going to look into this! Even if it means I go to Italy!!!! 😉

I do know you can get the supplement posted from Uk to US( if that is where you are from, think there was a difficulty with US customs from Europe ie Italy, though that might have been fixed) . For more info.Google the Uk charity ‘Abscent’ and link to Ckos Network: the head of Abscent , Chrissi Kelly, is very big in the smell training etc world.

I had Covid four weeks ago.
I mostly had neurological symptoms, no cough, no congestion. Dizziness, headache, malaise. I never lost my sense of taste or smell. I Improved over the ensuing weeks, but would still get waves of dizziness and just not feeling good. Wanting to lie down. Today is one of those days. And my husband was boiling hotdogs and to me it smelled like burning plastic… I have never had anything like that before, and it would not go away. So bizarre!
I feel for you… I feel for all of us!

I have been diagnosed with post covid syndrome and B12 deficiency. Not sure which has caused my symptoms, or if something else, like spine…..

After mild covid in Sept 2023 I got smell/taste disorder. Failed smell tests by ENT….realized my taste was off too. No interest in food, which helped my weight loss. Also had recurring phantom smell of fabric softener. And a constant metallic, then bitter taste that remains. Neurologist ruled out most things. Since then, I did do intermittent smell retraining and went on daily mega dose Vit b12 per neurologist order. A couple of months ago, I was retested by ENT on smell test and smell is now normal. The odd smell went away. Sadly bitter taste remains. I don’t know if that will ever leave.

I also had burning in my mouth intermittently. As well as hands and arms. And, hair loss, congestion.

During my research, I have read about something called burning skin syndrome. Here’s a link about burning skin…..there is a medication mentioned at the end, but I can’t take that med due to blurred vision.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9369885/#:~:text=Paroxysmal%20attacks%20of%20burning%20and,skip%20fashion%20irrespective%20of%20dermatomes.
Also, check your B12. It can cause a lot of symptoms like stinging, burning, etc.

I too have olfactory symptoms. Smells like an old cigarette burning, or electrical fire. Nauseating. A neurologist I saw recommended saline spray. I got the .09% I believe. It works very well to relieve those symptoms. No side effects from using it. Can use several times a day but I use it one time and it works for a very long time. If I sense it coming back, I just spray and it keeps it at bay.
Hope this helps. Since my last infection in February, 2024, I can barely smell or taste anything. Except for the disgusting smells of course! Par for the course. Good luck to you.

Im so sorry you’ve lost your taste and smell for that long! I am going on 2 years in December and I can tell you, it’s awful! I just came back from a trip to Europe (Paris on Viking Cruise Line) and Vienna, Austria. I couldn’t taste a single thing…. I’m having Stellate Ganglion Block injections and have had 5 so far. The Doctor in the pain clinic tells me to keep coming, but I’m not sure why as it’s not really helping me. I will be making my 6th appointment and will talk to him more about next steps as this is just frustrating me.

I still have most of my basic tastes eg sweet, sour, salty etc, just not the smell but that is what makes the subtle flavours…weird somethings I just cannot eat anymore as texture horrid, like pizza. Yes you missed out with some delightful French and Austrian foods! I belong to a Long Covid forum run by an anaesthetist ( Robert Grosman) who performs the SG block (and has provided lots of detail in posts exactly how it should be done), I thought it was a more invasive procedure than just an injection…but even that procedure seems to have a varying success rate: no difference to noticeable for say 6 weeks to almost a cure. But like you I would wonder if the same person is performing the injection 5 times without success why would a 6th make any difference, less he/she meanwhile has done more homework and knows to for eg alter the angle of it?

I go out infrequently - my spouse works at home 3 days/week and 2 in an office where he masks all the time. When we rarely do go out, it's theatre only for the masked performances, and if we meet friends for a meal, only one restaurant where the ceilings are VERY high and I feel safer bec of ventilation.

Like you, after I'm out, and if I have even mild sniffles, I test.

And I'm not searching for a 'cure' which is a long way off. I just want comfort from the symptoms.

I don't wear a mask. As soon as I heard the mandates were lifted (phone alert), I was in Lowe's garden section and pulled it off faster than you could blink an eye. I've tested at home about 3 times before big family gatherings.... ONLY if I felt that burning sensation.... because that was one of my very few symptoms during the time I had the virus. Otherwise, I don't worry about sniffles or a cough or test for covid if I do. Covid is here to stay.