Nasopharyngeal Symptoms

[Feliscumpleanos]

As I described in my introduction, a big part of my experience with ME/CFS seems to revolve around my nasopharynx area. When I trigger a PEM episode, the first thing I notice almost immediately after activity is an irritated/inflamed/tingling sensation in my nasopharynx, and over the course of the next few hours the inflammation seems to diffuse across my whole body and I become achy, fatigued, etc.

It also seems like this area is very sensitive. I get dry very easily from talking and have to constantly drink water, and if my throat gets too dry it tends to trigger a crash. I’ve noticed allergy meds and sprays dry that area out and have caused some diffuse physical symptoms after that. I tried Xlear nasal spray for several days and started feeling much worse, which makes me really curious to understand if that was a good thing and I was fighting some sort of infection there, or if it’s a bad idea to stimulate that area.

I find myself frequently reaching for spicy foods, hot drinks etc to try to soothe the area. It’s not congested, just very irritated and if I were to try to locate the fatigue in one place in my body, it would be there.

I’m curious if this feeling is prevalent for other people with ME/CFS and if anyone has had any luck with sprays or other things to try to soothe it. I keep thinking that given its connection to my fatigue, finding something that clears up that area could have some major effects on my overall well-being. Thanks in advance!

 

[hapl808]

There's that doctor in Japan who focuses on lighting abrading that area or something? I can find the link if you haven't already seen it.

 

[Feliscumpleanos]

Thanks, yes I have read that thread! Wish there were a place in the US to try it. I don’t think I’d feel comfortable trying to do it myself. I wonder if anyone’s had luck taking to an ENT about it? I’ve seen one during my workup but he didn’t find anything noteworthy.

 

[hapl808]

I feel the same. If I were in Japan I might want to try it, but I'd like to at least talk to some people who have had it done. I'm curious if they had long term ME/CFS diagnoses and symptoms, or more recent cases that might have resolved on their own. Hard to know if there were too many confounding factors.

 

[Hip]

There's that doctor in Japan who focuses on lighting abrading that area or something? I can find the link if you haven't already seen it.

Yes, that's Dr Osamu Hotta in Japan, this is the thread. He just rubs a cotton swab dipped in a zinc chloride solution on the nasopharynx to treat patients. It's very straightforward, and it might be possible to find a doctor willing to try this.


Dr Markov believes that ME/CFS is caused by a bacterial dysbiosis either in the kidneys, and/or the nasopharynx. He uses antibacterial vaccines to target these areas, and claims his vaccine treatment is able to fully cure 93% of ME/CFS patients. Dr Markov's theory and treatment of ME/CFS is detailed in the first post of this thread.

I tried Xlear nasal spray for several days and started feeling much worse, which makes me really curious to understand if that was a good thing and I was fighting some sort of infection there, or if it’s a bad idea to stimulate that area.

I had a similar experience using an anti-biofilm nasal spray, which I detail in this post. I may be that the bacterial die-off is exacerbating symptoms.

 

[Pyrrhus]

You may find this discussion interesting:

Is sinusitis a thing with us ?
https://forums.phoenixrising.me/threads/is-sinusitis-a-thing-with-us.83298/

 

[Rufous McKinney]

It also seems like this area is very sensitive. I get dry very easily from talking and have to constantly drink water, and if my throat gets too dry it tends to trigger a crash. I’ve noticed allergy meds and sprays dry that area out and have caused some diffuse physical symptoms after that.

yes: frequently and much of the time....dry mostly. Throat, tongue, sinus. The thought of "assaulting" my nasal pharynx is a no go in my book. I am so far refusing any COVID tests, shoving things into my sinuses.

I tend to want to drink very cold things...because my tongue and throat are so messed up.

(they got the tonsils and adenoids already)

 

[Feliscumpleanos]

Thanks all! A lot of good info to read and it sounds like this is a fairly common thing. Hoping to give Xlear another try when I get through introducing some new prescriptions.

 

[Booble]

*raising hand*
Yes.
Though I feel like my screwy nose and throat are not related to my screwy heart/blood flow.

 

[Judee]

Hoping to give Xlear another try when I get through introducing some new prescriptions.

I use a thymus glandular mixed with ascorbic acid and then gargle this mixture with some water. Mine is more the soft palate (crimson crescent area) but I wonder if that would be helpful to you as well. Also I've found when I swallow at the same time as looking up (to approximately where the wall meets the ceiling), the liquid tends to 'splash' up the back of my esophagus before it goes down.


You could maybe try this with the thymus and ascorbic acid mixture. Anyway, just a thought.

Also, I don't buy the expensive thymus supplements, though you could try that if you wanted to. I just use Swanson's thymus glandular and tapioca vitamin C powder. The two together really numb the area and make it feel much better a short time later.

 

[Feliscumpleanos]

Thank you! I think soft palate would still help. It’s kind of my entire nasal cavity + soft palate that seems affected. I tend to eat spicy things to try to soothe it so gargling sounds like it would reach a similar spot

I will add this approach to my list. Right now I’m doing a saline rinse with a neti pot every morning and using a facial steamer every evening. I think it’s helped a little bit but the sensation still comes back when I over exert.

 

[Judee]

Right now I’m doing a saline rinse with a neti pot every morning

Just be careful of long term use of the neti pot.
https://abcnews.go.com/Health/WellnessNews/frequent-neti-pot-sinus-infections/story?id=9054035 (I can't find the original study but I have seen it before.)

"Nsouli and colleagues said they conducted the study because, despite its popularity, this type of nasal saline irrigation had not been assessed for efficacy.
The researchers recruited 68 patients who had used nasal saline irrigation frequently for a year, then discontinued the practice for a year. A total of 24 control patients who continued to wash out their noses with salt were also included.

The investigators found that 62 percent of people had a significant drop-off in the frequency of their rhinosinusitis infections after discontinuing the treatment.
Those patients also had 50 percent fewer sinus infections than those who remained on the nasal saline irrigation therapy.
Nsouli said the likely explanation is that irrigation depletes the nasal mucus, which contains several key defense mechanisms -- including immunoglobulin A, immunoglobulin G, lactoferrin, and lysozyme.
This "good mucus," Nsouli said, contains "antibacterial, antifungal, and antiviral agents that clear any microorganisms from the nose."

 

[Rufous McKinney]

the liquid tends to 'splash' up the back of my esophagus before it goes down.

I feel that often, too-

something in the back area is swollen but mostly dry in my case. And that splash thing happens...

 

[Feliscumpleanos]

Just be careful of long term use of the neti pot.
https://abcnews.go.com/Health/WellnessNews/frequent-neti-pot-sinus-infections/story?id=9054035 (I can't find the original study but I have seen it before.)

"Nsouli and colleagues said they conducted the study because, despite its popularity, this type of nasal saline irrigation had not been assessed for efficacy.
The researchers recruited 68 patients who had used nasal saline irrigation frequently for a year, then discontinued the practice for a year. A total of 24 control patients who continued to wash out their noses with salt were also included.

The investigators found that 62 percent of people had a significant drop-off in the frequency of their rhinosinusitis infections after discontinuing the treatment.
Those patients also had 50 percent fewer sinus infections than those who remained on the nasal saline irrigation therapy.
Nsouli said the likely explanation is that irrigation depletes the nasal mucus, which contains several key defense mechanisms -- including immunoglobulin A, immunoglobulin G, lactoferrin, and lysozyme.
This "good mucus," Nsouli said, contains "antibacterial, antifungal, and antiviral agents that clear any microorganisms from the nose."

Ah this is really good to know, thank you! I will switch to just doing it as needed in that case