The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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what causes the sore throat we get?

Discussion in 'General Symptoms' started by Andrew, Jul 10, 2015.

  1. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Below is a list of my symptoms. I can easily see all but one being caused by inflammation in the central nervous system. That one is sore throat. Which I rarely get now. But it is odd the way it happens. It is mild and doesn't last long. That is unlike the sore throats I used to get with colds. So are there any ideas of how this soreness happens.

    orthostatic intolerance
    shattered sleep
    sinus pressure
    intermittent mild sore throat
    achy throughout my body
    intermittent loss of concentration and memory
    easily fatigued
    post-exertion symptom exacerbation that can last for days or weeks
    sensitivity to light and temperature
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    In my case, I have come to believe that my sore throats are due to material dripping into my throat from my ears, and/or possibly post-nasal drip. The reason I think this is that it only seems to happen when I have blocked ears, or when they are starting to unblock and smelling horrible, suggesting infection, or similar with my nose (I get a horrible smell here too at times).

    It may be different for others. Strep throat?

    Although I get hayfever a lot nowadays, I haven't noticed sore throat with that.
  3. lansbergen

    lansbergen Senior Member

    If you want to tie sore throat to the cns think cranial nerves, Those come from the brainstem..
    merylg and maryb like this.
  4. minkeygirl

    minkeygirl But I Look So Good.

    Left Coast
    I think virus. I have yet to figure out why I get a sore throat when I talk. It lasts for a long time.
    maryb likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

    If throat feels itchy or swollen it can also be from mast cell reactions/ MCAS for some of us.
  6. halcyon

    halcyon Senior Member

    I think it's just part of the overall increase in lymph activity. As we get sore, swollen lymph nodes we also (at least I do) seem to get sore swollen tonsils as they are lymphoid tissue as well.
  7. Mary

    Mary Forum Support Assistant

    Southern California
    I used to get very frequent mild sore throats, generally accompanied by fatigue. I'm guessing there were 3 possible causes, operating at different times: strep, EBV and pantothenic acid deficiency.

    The recurring strep infections I would get, I'm guessing were due to a weakened immune system. Every once in awhile I would take ABX for the sore throat and it would go away, but only to return.

    Sore throat is also a symptom of pantothenic acid deficiency. Your sensitivity to light and fatigue can be linked to adrenal problems. I also used to get burning feet with one particular sore throat - I never went to the doctor for that because I just could not bring myself to tell him about that particular symptom. And then I read that burning feet are also a symptom of pantothenic acid deficiency. Pantothenic acid is the B vitamin crucial for adrenal health and so I started taking it, and the burning feet stopped.

    And then I wonder if sometimes it was EBV. Testing indicates I had an active EBV infection at one time but I was never diagnosed at the time. And sore throats are a symptom of EBV.

    FWIW, my sore throats have stopped - I rarely get them any more. Perhaps my adrenals and my immune system are in better shape than before.
    Lou likes this.
  8. Forbin

    Forbin Senior Member

    This is a good question.

    At this point, I'd wouldn't be surprised if this feeling was actually caused by the elevated cytokine levels that Hornig/Lipkin found early in the course of the illness. Elevated cytokines can make you feel crappy in other ways (possibly as an evolved strategy to force you to conserve energy), so I wouldn't be surprised if they can also somehow cause conditions that either feel like or actually are a sore throat. For me, at least, this would be consistent with the sore throat being a prominent symptom early in the course of the illness, but one which faded after a couple of years.
    TrixieStix likes this.
  9. JAH

    JAH Senior Member

    San Jose
    I also think it's viral. I always get them more when I go off anti virals. I still get them when on them, but quite minor, mild, intermittent.
    maryb and minkeygirl like this.
  10. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Now that you people have helped me focus, I guess it makes sense that sinus pressure and swollen lymph nodes means infection. And infection can be a result of reduced immunity. Or it could be related to infection that causes CNS inflammation.

    FWIW, an otolaryngologist showed me how to massage my neck to get the lymph flowing. The swelling and tenderness are hardly noticeable now. That's why I didn't mention it.
    merylg likes this.
  11. Hip

    Hip Senior Member

    The sore throat from my acute viral infection (that later led to ME/CFS) never went away in my case, and my throat has been continually sore for the 12 years I have had this virus. The sore throat was the first symptom my virus produced (but within weeks the virus also started spreading to other organs like the stomach, giving me chronic stomach aches, and then spread to the intestines).

    Up to two years after my acute viral throat infection, I was still infecting people with my virus, whenever I was in close social contact with anyone (eg: sharing a meal). So clearly my chronic sore throat was not only inflamed, but also shedding infectious viral particles.

    Whether my sore throat is still shedding viral particles 12 year on I don't know; I would only find out if I spent some time in close social contact with a new acquaintance; all my current friends and family have my virus, so they are already infected.

    My original sore throat was herpangina-type sore throat. A herpangina sore throat is one in which there are inflamed red tissues specifically in the area at the back of the soft palette (on the palatoglossal arch — the arch the uvula hangs down from). Herpangina is usually caused by enteroviruses such as coxsackievirus B.

    Interestingly, during the acute infection period of my herpangina sore throat, the red inflamed tissue was found just on one side of my palatoglossal arch, near where this arch meets the tongue. After many months, this redness in my throat very gradually went away, and after some time, a crimson crescent appeared in roughly the same place as the original red herpangina inflammation.

    You can see a picture I took of the crimson crescent in my throat in this post.

    I think it is very interesting that crimson crescents appear to be the long term sequelae of the original herpangina sore throat. Sore throats mark the beginning of many a case of ME/CFS. The crimson crescents might conceivably be an area of the mouth where there is a low level enterovirus infection deriving from the original virus.

    Some have suggested the long term presence of crimson crescents on the soft palette of ME/CFS patients may be a diagnostic sign for ME/CFS.
    bspg, merylg and Aurator like this.
  12. Aurator

    Aurator Senior Member

    I deeply sympathize, Hip. I too have had a sore throat since the very start of my illness, which began with a particularly bad URT infection. I've never been given a good explanation for the ongoing soreness by the NHS clinicians I've seen. Both a gastroenterologist and an ENT specialist were adamant that the soreness must be being caused by acid reflux, and no amount of resistance from me to that explanation succeeded in getting them to change their minds.

    I pointed out that my dietary habits were extremely unlikely to put me at risk of reflux and I had never had reflux before the viral infection. I asked them how it happened that the degree of soreness in my throat was always correlated with how good or bad my other symptoms were, not with what I'd drunk or eaten and when. I also asked how common overwhelming fatigue, PEM and dizzyness on standing were among their other reflux patients. Both doctors had to admit that these were not symptoms that were commonly reported.

    When I asked them to explain then how it happened that I did have fatigue etc. as well as the sore throat supposedly due to reflux, they resorted to saying that these others might be "functional" symptoms.

    I could sense what obstinacy I was up against and threw in the towel. Their responses marked the moment more or less when the cell door closed on me, locking me in that particularly cruel kind of solitary confinement that organised society inflicts on ME patients for having the effrontery to get sick with something that's not yet properly explained in the textbooks. We still have a voice at least with which to try and fight our way out of our confinement, but not much else, and even the strongest voice grows tired after a while.
    merylg, Hutan, MeSci and 1 other person like this.
  13. Hip

    Hip Senior Member

    Acid reflux appears to be a bit of a wastebasket diagnosis, which may be given by default when the ENT doctor cannot find the cause for a chronic sore throat. It's as if they don't want to send you away with nothing in terms of a diagnosis, so they give you this acid reflux label, whether it fits your case or not.

    Apparently this overdiagnosis of acid reflux is particularly common in infants:

    Though my virus seemed to cause a mild chronic sore throat (lasting for longer than 10 years) in a number of people who caught it; it was not just me. My virus also caused chronic nasal congestion and post nasal drip in many who caught it.
    manasi12 and merylg like this.
  14. Chriswolf

    Chriswolf Senior Member


    I have pretty much all of those except nocturia.

    I'm pretty sure the incidents of throat soreness I get have a viral origin, there's no other practical explanation.

    I get acid reflux here and there, but my sore throat feels specifically like my tonsils and adenoids are irritated. Most of the acidity problems in my stomach stay there, very rarely is it bad enough to cause tenderness, almost never.
  15. Kathevans

    Kathevans Senior Member

    Boston, Massachusetts
    @Hip I certainly may have had acid reflux in my 40s prior to getting really sick. I took zantac for 8 years, often at a half dose only at night to relieve symptoms, which, by the way, it never really did. Six months into taking it, I began to burp much more than usual. When I told the doctor, he said I was swallowing air. I don't think so.

    Six months after taking an antibiotic for an infection on my foot, I began to suffer from weakened muscles, no exercise recovery, rashes and small red spots on my tongue. They were sore and over the years they've grown worse, fissures along the sides that open and close depending on the food I eat the the stress I'm feeling. At night my mouth feels dry and sticky. When I eat too many carbs or sweets, I get a sore throat. This isn't thrush, though possibly some other form of fungus or bacteria. My OAT Test actually shows more bacterial issues than fungal.

    Who knows. I've always known that it was the zantac that made this particular symptom viable, that the ph of my gut was out of whack when I took those antibiotics, and that it was just a hop skip and a jump from my gut into my mouth once that imbalance existed.

    For me, the mind-body connection was made clear when I finally could get off the zantac only three weeks after starting to chant with the Buddhists. Getting my stomach acid levels back up has been the work of the last decade. But I'm still working on the tongue/throat/stomach whatever-it-is.
    Last edited: Jul 25, 2015
    manasi12 likes this.
  16. Hutan

    Hutan Senior Member

    New Zealand
    Have there been any studies to try to identify the cause of our sore throats?

    I get mine at the beginning of a crash, along with prickling/shivery chills, a feeling of being unwell and an inability to keep warm. Usually it just lasts an hour or so.

    Surely, given the throat is fairly accessible, it wouldn't be so hard to study. And surely there is something to find, either visually or from a swab or biopsy, that accounts for the pain.

    Do I remember correctly that Lipkin had a study underway looking for pathogens in throat swabs? Was that work finished?
    manasi12, Isaiah 58:11 and mango like this.
  17. NelliePledge

    NelliePledge plodder

    Got this at the moment. I have two levels of throat problems. When I'm at my current normal level of functioning I get a croaky very slightly sore throat when my energy is about to run out. It is a warning sign that I need to stop. Then like now when I have PEM and a worse spell the throat is worse too. Right now it feels a lot worse like a full on laryngitis/pharyngitis and I can't talk without it hurting. I was off work with laryngitis/flu type symptoms regularly for 3 or 4 years before I got diagnosed 2 years ago which obviously went down on record as viral infections. Including having to get signed off sick by the Dr a few times because I was ill for two or three weeks. I'm having to see GP tomorrow as I'm not able to work my 15 hour part time from home hours so need to get signed off again. I'm not sure whether this is repeat viral infections I'm picking up or if it is purely down to the ME. Obviously the first type when I'm low energy is the ME but the worse type could be either I think. I guess either way it is a result of the ME. Low immunity susceptible to new viruses or reactivation of existing one or ?....
    merylg and Hutan like this.
  18. NelliePledge

    NelliePledge plodder

    Hi @halcyon I get swollen glands too is this down to increased lymph activity I'd seen it suggested that lymph system is probably sluggish.
    Last edited: Aug 12, 2017
  19. tudiemoore

    tudiemoore Senior Member

    Southeast U.S.
    Early on I very often had rather mild, fleeting sore throats.
    I say fleeting--at times at times they disappeared overnight.

    I developed a severe version, but no congestion, inflammation, etc., when social plans abruptly changed one evening, had to wait for taxi, etc. and was up almost all night.
    My throat hurt more and more severely.
    Twenty-four hours later after I had gotten home, rested well, my throat was completely normal.

    I never have sore throats now other than during allegy season.
  20. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I had some mild sore throat that disappeared the same day it appeared.

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