How do you experience colds?

[purrsian]

I'm in the "sick who don't get sick" group. Got glandular fever in 2003 (thought it was bad strep throat as I didn't fit the normal glanduar fever presentation) and was never the same after, gradual onset ME/CFS with diagnosis in 2006. Since that glandular fever, I've only had two or three colds/flus. I've even kissed my fiance and drunk out of the same bottle as him while he's sick - never get sick. I think that the reason there are two distinct presentations (sick all the time or never sick) is because we have different subsets of ME/CFS that aren't yet clearly distinguished due to lack of knowledge.

I was diagnosed in 2000, and didn't catch a cold for thirteen years. No matter how bad a cold was going around, I was immune to it. Then, in November of 2013, I caught a sinus flu that was going around. No, let me amend that. I caught it BAD. It featured an intense head cold and other cold-ish symptoms--feverishness, fever, aches and pains, coughing, blurry visions, tinitus. (I'm sure it was flu because it also featured some digestive catastrophes.) Trouble is, this sinus flu never left. I no longer have the head cold part, but I have the sensation of terrible pressure in my head, throat pain, blurry vision and a very fierce ringing in my ears. (No, I don't have allergies.)

I hate the throat pain but can live with it. Unfortunately the blurry vision (even with prescription eye drops) is so bad that I can't read for several hours a day, and the ringing in my ears sounds like an approaching army--shrieks, rumbles, whistles and roars. I often don't hear the phone or the t.v., and constantly ask people to repeat themselves. I have even woken up from a sleep because the noise in my head is so revved up. At this point my doctor (a new one, who keeps her expression carefully blank when ME/CFS comes up) seems to think I am the worst somatic case she has ever seen.

Well, I do feel like I'm going mad. My brain feels like it is spending all its time addressing these terrible sounds, and so it engages only partly with the world beyond.

I don't imagine anyone can give me anything to stop whatever's going on. God knows no prescriptions or over-the-counter solutions help. But I would like to pay for a histamine test, as that might at least prove to my doctor that things are not exactly as they should be.

I have had a similar issue since the last time I got sick in Feb 2014. Before then, I never had any ear or sinus issues. I got a terrible flu in Sydney (my mum did too but nowhere near like I had it) and then we had to get a plane back home while I was still sick. Ears popped, couldn't hear clearly for rest of day. The following year was filled with symptoms I'd never had before - sore throats, sinus face pain and full feeling, postnasal drip. Had CT scan of sinuses and they couldn't be more perfect and healthy looking. Of course.

Gradually the worst died off, but I'm still left with the pressure and full type feelings and constant tinnitus (not as bad as meadowlarks though, you poor thing!). The dizzy/full/pressure type feelings make it very hard to focus on daily life and when bad, I avoid doing things like driving. I do actually have a tiny amount of fluid visible to the doctor in my eardrum, so at least there's something physically there to show her!

I really believe that I still have a very low grade infection that my body just can't deal with. I believe that "I don't get sick" purely because my body just can't muster up the energy to fight anything off and thus produce an immune reaction. I think that's why when we are feeling better overall (the sick who don't get sick subset), we actually finally get sick, as our bodies can finally deal with the bugs.

I've just started taking LDN to try and re-regulate my immune system. I have a really positive reaction to nurofen plus codeine (@meadowlark - it might be worth trying to note if opioid medication helps your head symptoms) and I've heard some people's immune systems improve on LDN and they actually start getting sick. Only been on it 5 days on very low dose.

 

[roller]

this has been already mentioned in the ebers papyrus.
and still there are no meds.
you can just try symptom relief.

the pressure on planes makes it so much worse.
im wondering, if this effect could be utilized with some sort of treatment.

 

[meadowlark]

I've just started taking LDN to try and re-regulate my immune system. I have a really positive reaction to nurofen plus codeine (@meadowlark - it might be worth trying to note if opioid medication helps your head symptoms) and I've heard some people's immune systems improve on LDN and they actually start getting sick. Only been on it 5 days on very low dose.

How rotten that you've been going through this. Unfortunately, LDN, codeine and opiates do nothing for me, I think nurofen is like ibuprofen up here (Canada), and unfortunately that doesn't help me either. But if you get help from them, that's fantastic. It does help me to know that someone else, somewhere, has experienced something similar to me. Thanks so much for posting.

 

[SK2018]

I haven't had a cold in 14 years(since I was diagnosed with ME). I used to catch any bug that was going around. At first I thought it was done to lack of social contact, I just wasn't being exposed to sick people as when I was at work. But over the last few years I've actually made a point of being in contact with people who have colds and nothing happened, not like the colds I used to get(bunged up, streaming nose etc). But I have had several chest infections.

Your immune system is most likely stuck in overdrive ie "red alert" mode chronic immune activation thus it will knock invaders out faster

 

[SuzieSam]

Wow, this is so good to read. I can't remember the last time I had a cold. My daughter gets them all the time, and sneezes all over me in her need for constant affection, bless her.

She's got a horrible one now. I'm having a bad crash. I thought I'd pushed myself too hard the other day making soup for her. Maybe it's that my immune system is over-reacting.

Another weird thing is my hayfever vanished. Had it badly. Some connection there. Too foggy to make it.

 

[hinterland]

Me too! My experience is very similar, thanks for posting this Persimmon! It's very interesting what you say about a prodrome as I've noticed that too, sometimes the onset of a cold happens in slow motion and invariably they go on for a protracted period of time. It may become interwoven with the ME/CFS, it may partially resolve only to recurr, or sometimes I seem to get 2 or 3 viruses in a row. If other healthy contacts around me get the same bug it may express in them with more classic URT infection symptoms, and it might be more acute for one or two days but then they make a rapid recovery while my illness persists.

The other interesting thing I've noticed is that sometimes I have a period of reduced ME/CFS symptoms, more energy and clarity of thought in the 24hrs +/- 12hrs before getting hit by a viral infection. This can be quite misleading as I sometimes make arrangements and plans to catch up with tasks in this calm before the storm, only to have the wind taken out of my sails.

I think everyone here appreciates a good nautical analogy...

Since contracting ME, my experience of colds involves:

(1) An unusual and protracted prodrome, during which I typically assume its just a fluctuation of regular ME symptoms (ie "I must have overdone it and so am experiencing worse than usual sore throat, low/grade fever and light headedness").
After maybe 5 days of this, I start to wonder if I've misinterpreted these symptoms, and whether a cold has started. There might be several days of not knowing which it is.
Eventually it becomes obvious I have a cold.

&

(2) Lingering symptoms.
My cold might "break" repeatedly, like multiple waves
(ie I go through the stage of sneezing, running nose and watering eyes; then it dries up; then the fluids flow again; then it dries up again...)
After that process, the whole thing dies down very gradually, with some symptoms (typically coughing and unusual sore throats) lingering for maybe 3-4 weeks.

From start to finish, the process never takes less than a few weeks, and might last for 2 months.

 

[paul80]

I used to get no colds but now i get everything going and they affect me much worse than people around me. Only good think about it is my sleep seems to be much better when i have one, probably due to drowsiness.

I tried some things dr myhill suggested lately and think i actually managed to avoid a cold my partner got. Here is the page i got the info from.