The Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Sore Throat Poll

[Cort]

From Mady Hornig's Swedish Presentation:
[fright]

[/fright]

And we’re also doing the microbiome analysis which is including both the bacteria in the gut as well as in oral pharyngeal areas, where many patients are starting with a sore throat, swollen glands in the head and neck.....​

I did not have sudden onset, nor did I have swollen glands but I had sure had a constant sore throat for about ten years. In truth, it was the least of my worries but it always there - mildly inflamed and then eventually it just went away.

I don't know what it means but it must mean something. I never had a problem with sore throats prior to getting ME/CFS/FM.

The throat, of course, is a common place for pathogens to enter. Infectious mononucleosis / glandular fever often causes sore throats, fever and swollen glands.

Did you or do you experience sore throats post ME/CFS/FM?

 

[Who Me?]

I can't remember that far back but i don't think I had one. I get one now after I talk.

 

[weyland]

Didn't vote because I don't match any of the options. I did not have a sore throat for the first year of illness. Upon starting inosine I developed a severe sore throat for several weeks and my tonsils became quite swollen and red and remained that way for about a year until I started amantadine which made them shrink quite a bit. Like Who Me? I also get a sore throat after I talk.

 

[Upgrayedd]

I really don't remember sore throats, though I may have had them, because I had an active Mono infection.

What I do recall is chronic sinusitis - swollen, stuffed nose that made it hard to fall asleep sometimes because I couldn't breath well through my nose. That's mostly gone now, thought I still have pretty sensitive allergies.

 

[San Diego]

I really don't remember sore throats, though I may have had them, because I had an active Mono infection.

What I do recall is chronic sinusitis - swollen, stuffed nose that made it hard to fall asleep sometimes because I couldn't breath well through my nose. That's mostly gone now, thought I still have pretty sensitive allergies.

I had this and constant bronchitis/pneumonia/exercise induced asthma prior to and during onset.

As a result, I took so many antibiotics that my gut went south - constant diarrhea for over a year. That was the last straw. The sinus issues remain, with sensitive allergies like you, but haven’t had chest troubles since early on.

 

[Empty]

Bad swollen throat/lymph nodes on sudden onset. Fluctuating sore throats with red crimson arch.

 

[madie]

No sore throat associated with CFS, but my submandibular glands have been enlarged for years.

 

[Upgrayedd]

I had this and constant bronchitis/pneumonia/exercise induced asthma prior to and during onset.

Yes, I forgot about the asthma. I had breathing difficulties from the onset, but I never described it as asthma. I didn't think of it as shortness of breath, more like shallowness of breath... I remember sitting on a couch exhausted, completely obsessed with my breathing, not understanding why I couldn't seem to breath properly.

I finally went to a pulmonologist who diagnosed it as asthma and got me on meds for it. I took them for years and they were a big part of my initial improvement, but I finally weaned off and only take them when the asthma acts up.

 

[San Diego]

Yes, I forgot about the asthma. I had breathing difficulties from the onset, but I never described it as asthma. I didn't think of it as shortness of breath, more like shallowness of breath... I remember sitting on a couch exhausted, completely obsessed with my breathing, not understanding why I couldn't seem to breath properly.

I finally went to a pulmonologist who diagnosed it as asthma and got me on meds for it. I took them for years and they were a big part of my initial improvement, but I finally weaned off and only take them when the asthma acts up.

Exactly. It wasn’t really asthma, but the docs called it that for lack of anything better.

I’d been a runner my whole life, and suddenly I was always short of breath. Had to keep stopping to rest.

I literally just recently learned how to completely fill my lungs again. I know that sounds weird, but it was painful learning to do so. Like something had frozen and I had to break it. Odd.

 

[LavenderDojo]

About 4 years into my illness I got a sore throat + globus sensation on the left side of my throat only. It has persisted every waking moment since (roughly 4 years). I've had multiple ENT examinations. They never found anything, but took my tonsils out just in case. That didn't change anything.

A recent positive development is that it has moderately decreased in intensity, concurrently with the worst of my fibromyalgia pain subsiding. The worst of my fibro pain (burning and aches unrelated to pressure points) was also on the left side. Curiously, just about every symptom I've had has been worse on, or exclusive to, the upper left side of my body: sore throat, pain, knots, spasms, tinnitus, a maxillary cyst, and a really pustulant eye infection that lasted 3 years. The left eyelid remains really droopy, which, hah, I almost like because it somewhat expresses my fatigue.

 

[Lissa]

Exactly. It wasn’t really asthma, but the docs called it that for lack of anything better.

I’d been a runner my whole life, and suddenly I was always short of breath. Had to keep stopping to rest.

I literally just recently learned how to completely fill my lungs again. I know that sounds weird, but it was painful learning to do so. Like something had frozen and I had to break it. Odd.

Wow!!! This sounds so familiar! I had the same kind of experience. Used to be athletic, run etc. then kept getting shortness of breath. Docs couldn't find anything.

Tested for asthma--- nope. Eventually had a doc call it "exercise induced asthma". Had another doc prescribe an inhaler after a respiratory infection. And another doc tried to imply it was anxiety! Ugh!!!!

All this during the 15 years prior to becoming fully disabled. Makes me wonder if they'd recognized it sooner- would I be so ill now?!

 

[San Diego]

Wow!!! This sounds so familiar! I had the same kind of experience. Used to be athletic, run etc. then kept getting shortness of breath. Docs couldn't find anything.

Tested for asthma--- nope. Eventually had a doc call it "exercise induced asthma". Had another doc prescribe an inhaler after a respiratory infection. And another doc tried to imply it was anxiety! Ugh!!!!

All this during the 15 years prior to becoming fully disabled. Makes me wonder if they'd recognized it sooner- would I be so ill now?!

Makes me wonder how many other people with “exercise induced asthma” went on to have much bigger problems! (or were dismissed as anxious.)

Have you been able to retrain yourself to take full, deep breaths? After so many years, it sure feels good! Cant say that it helps any symptoms, but there’s something about taking a full breath when anxiety gets bad.

 

[Lissa]

Makes me wonder how many other people with “exercise induced asthma” went on to have much bigger problems! (or were dismissed as anxious.)

Have you been able to retrain yourself to take full, deep breaths? After so many years, it sure feels good! Cant say that it helps any symptoms, but there’s something about taking a full breath when anxiety gets bad.

Yes, thankfully. I stumbled on yoga classes a few years before getting full on sick and made great progress with learning to belly breathe. Also some simple meditation-- breathing exercises really -- which really help.

However I must add- I had some body work done once and the woman was working on my neck/shoulder, when suddenly something shifted. Spontaneously I took the clearest, deepest, most full, and easy breath I've had in my whole life! It was amazing and surreal!

Unfortunately that didn't last, but it sure made me wonder --- is that what it's supposed to feel like for "normal" people?! How delicious!

 

[Merida]

Holy Mackerel . I finally got back on. Had to use my main computer. So good to chat again. My big problems started with an injury in 1998. But in 1988 I had a weird virus - like none I had experienced. Very sore throat, severe sudden asthma, sensitivity to many things, hives, severe sulfite, sulfa allergy, terrible sinuses, visual migraines, and insane throat clearing. I was sick, but not disabled sick, for 1 and 1/2 years. I actually called public health to try to find out if they were tracking this weird virus - maybe characterized by throat clearing, asthma. One person commented that one of their nurses had been sick with something like I described, but they didn't know any more than that.

Later, I found several people who had this strange prolonged throat-clearing after a flu-like illness. My son ( who had the severe EBV with neuro problems) also had/has throat clearing. Interesting that thus virus seemed to reoccur every October, but became less and less each year. The asthma finally cleared after a huge shot of prednisone in the rear, a Medrol dose pack, and prednisone inhaler. Was totally gone in 3 months.
Does anyone relate to this?

 

[Merida]

Lissa, so interesting about the body work. I sm still trying to understand this and fix it. Think it is all related somehow - scoliosis ( even mild) is an outward indication of susceptibility?

 

[Merida]

@LavanderDojo
The droopy eyelid is called ptosis and is commonly reported by Chiari people. Do you know about Chiari? No one really wants to consider that possibility, but ...

 

[Kristine Anderson]

I get intermittent sore throats and I have FM and ME/CFS. I also get a lot of fevers, which I used to attribute to FM, but now wonder if they are from RA and Lupus. Maybe there's a connection with all of these diseases that makes the throat sensitive to...something. My skin hurts at times, which I've heard from many others. But the combination of the things I suffer from just meld into the "I don't feel good very often" syndrome. I was recently put on Adderall for excessive daytime sleepiness due to high doses of opioids. Now I see there is research into Narcolepsy as it may relate to ME/CFS. (I think I have that right, but it might be something else.) I might add that while I try not to take any new medicines (and am constantly trying to get off of old ones), the Adderall absolutely changed my life. My depression is gone and I have mental energy that allows me to feel human and have longer days out of bed. That's good news!

 

[JudeAU]

From Mady Hornig's Swedish Presentation:
[fright]View attachment 1533 [/fright]

I did not have sudden onset, nor did I have swollen glands but I had sure had a constant sore throat for about ten years. In truth, it was the least of my worries but it always there - mildly inflamed and then eventually it just went away.

I don't know what it means but it must mean something. I never had a problem with sore throats prior to getting ME/CFS/FM.

The throat, of course, is a common place for pathogens to enter. Infectious mononucleosis / glandular fever often causes sore throats, fever and swollen glands.

Did you or do you experience sore throats post ME/CFS/FM?

There are not really enough options for me to be accurate in the poll but the closest one is the last one. I had tonsilitis on and off during my childhood = sore throat. I had glandular fever at 16 = sore throat but I don't remember between 12 and 16years whether I did or did not but it was never a major symptom for me when it was chronic so I assume that is why I cannot remember. I was diagnosed with fibrositis during my teenage years but the fatigue was mostly ignored even by me because I wanted to keep up with my peers - again no recollection of sore throats, did not make mental notes about this which maybe because it was a chronic condition. But I do know that I have had sore throats on and off since I really began taking notice of my symptoms after childbirth. These days I would say on more than off but I do notice a seasonal variation for instance since the beginning of the autumn 'cool night' weather change till the end of spring at least, I will have a constant sore throat - it has always been more of a "viral"sore throat pain more than a "bacterial" sore throat pain (which I experienced in my early years) so I know the difference. Stingy pain verses deep muscular pain. If you can put up a box for that in your poll I will pick it. lol

 

[JudeAU]

Holy Mackerel . I finally got back on. Had to use my main computer. So good to chat again. My big problems started with an injury in 1998. But in 1988 I had a weird virus - like none I had experienced. Very sore throat, severe sudden asthma, sensitivity to many things, hives, severe sulfite, sulfa allergy, terrible sinuses, visual migraines, and insane throat clearing. I was sick, but not disabled sick, for 1 and 1/2 years. I actually called public health to try to find out if they were tracking this weird virus - maybe characterized by throat clearing, asthma. One person commented that one of their nurses had been sick with something like I described, but they didn't know any more than that.

Later, I found several people who had this strange prolonged throat-clearing after a flu-like illness. My son ( who had the severe EBV with neuro problems) also had/has throat clearing. Interesting that thus virus seemed to reoccur every October, but became less and less each year. The asthma finally cleared after a huge shot of prednisone in the rear, a Medrol dose pack, and prednisone inhaler. Was totally gone in 3 months.
Does anyone relate to this?

I am really disabled these days after nearly a lifetime of ME/CFS/FM/Borreliosis but this lung stuff is a relatively new comer and it seems to be associated with chronic sinus problems that don't make me even think of sinus problems because the sinus symptoms themselves are not always obvious. The symptom that my optician helped me with was deep eye socket pain affecting the muscles or tendons in the eyeball movement. He said it was a sign of chronic sinus infection and recommended an over the counter steroid nasal spray. Low and behold, slowly it worked but it did not just work on that!!! I had also been having this throat-clearing and chest-clearing need in connection with what I could only call wheezes and squeaks. My GP said a touch of asthma on a day I know I did not even feel a wheeze so when I brought it up next time she listened and heard nothing but this was after the over the counter spray use for maybe 3 weeks. She still has not heard what I have been experiencing since February (after my neighbour, not me) had a virus going around. I did not catch the cold part, as per usual, but I had an increase in post-nasal drip (another chronic thingy since childhood). I had a "smokers" cough during all this so was referred for a lung HRCT scan. They found a nodule as yet not identified - either infection, aspiration or neoplasm the report suggested. If I can get my legs back enough to walk into radiology, I will have a rescan tomorrow, however I also have mycoplasma pneumoniae antibodies so I personally think it is a reactivation of that. Had it feel like it has reactivated before now too but no-one will believe me because I am not presenting a positive IgM. But hey I really just meant to say yay for prednisone inhalers. I don't know what Medrol is.

 

[JudeAU]

Lissa, so interesting about the body work. I sm still trying to understand this and fix it. Think it is all related somehow - scoliosis ( even mild) is an outward indication of susceptibility?

that's interesting, I have congenital scoliosis.