Anyone else experience getting signs of a cold but never coming out fully?

[anniekim]

I am one of those people with ME who does not seem to get colds. However, I sometimes have the feeling I have signs of a cold but it never comes out fully. Does anyone else get this? I have felt a little nasally (but not to the extent I need tissues) and hot the last two weeks and my ME has been even worse with really bad pain (I am bedridden 24/7). I wonder if my body is unsuccessfully fighting a cold virus?

I'm sorry due to pain I can only write online very briefly so will not be able to write more but just interested in other people's experiences/thoughts. Many thanks in advance

 

[maryb]

I do get some cold symptoms regularly, and think every time its one coming, and then nothing, same with cold sores I keep thinking I'm getting one and then it disappears, strange..... I've been told my immune system is set too high, I need an immune modulator to help,, at the moment too sick to think about yet another supplement.
So sorry to hear you are so ill. Wish there was something I could do to help.

 

[helperofearth123]

Yes, for the past 10 months of my nearly 4 year long moderate/severe CFS 'experience' I've had recurrent cold like symptoms on and off.

I've spent about half the days (not exaggerating) feeling like I'm coming down with a cold only for it not to 'come on' fully. All year round my nose has felt never properly clear, it's always a bit bunged, and my ears are all bunged up with wax. It's been like that 100% of the year, but that's what I call it 'being dormant'. The other half of the days in the year It just sot of starts to grow into a cold again, with a slight cough + splutter/flem in the lungs, and runny nose and muscles will start aching all over and feeling really heavy, brain fog gets (even) worse, just when it feels like the cold-like symptoms are at their worse. So my CFS gets worse when these cold-like symptoms are worse. Then the cold symptoms will suddenly dry up and I'll feel a tiny bit better all round and have a few days of feeling not quite as bad (still very ill though). Then the cold like symptoms will be back for a few hours, or a day, then gone again, then back for a week, then gone for 2 weeks, back for day, etc. Never getting a break from it for longer than 2 weeks.

This recurrent cold-like symptoms started in me after catching a nasty flu (just a really bad cold) a year ago which triggered a relapse. I had rocked up to about 70% better doing 3 hours of walking a day last summer after getting neck massages from an aruvedic doctor in a 'glory period' lol, lasting about 6 weeks. Then I caught the flu, came crashing back down and was left with these recurrent mini-cold like symptoms for the past year. Ever since I've had these cold symptoms the neck massages wont work anymore.

An NHS neurologist told me he has a theory that bad infectious can make glands in the neck swell up which restricts bloodflow + drainage of the brain, which I thought sounds very interesting as I had had such a huge boost from the neck massages. He's going to try putting balloons in my neck to open up the veins, maybe that will be like a more extreme version of the neck massage.

Hoping you feel better soon.

 

[anniekim]

Thanks everyone for sharing your experiences, very helpful. If our dysfunctional immune systems are not dealing with the cold virus, does it mean we never get rid of the cold virus or it just takes a lot longer? Any thoughts? Would this be harmful? Once again many thanks in advance.

 

[MikeJackmin]

This has been a very consistent sign of over-activity for me.

I can easily distinguish these symptoms from the flu by the following test - lay down and rest for a while, not reading, not stressing over anything, just relax and do nothing. The symptoms subside. Now add some light activity - try reading a book, or paying the bills, or washing dishes - and if the symptoms come right back, well, that's not the flu.

My opinion is that if you are pushing yourself so hard that these sorts of symptoms are a frequent occurrence, that's a gold-plated warning sign to *slow down*. I've learned that pushing harder to try to get things done despite these symptoms is an extraordinarily bad idea, and I've also found that doing less, over a period of a few days, makes them go away completely.

 

[helperofearth123]

I'm not sure, I've been living under the impression that 'there is no virus' but rather that its my immune system is 'stuck' in virus fighting mode which produces these symptoms. But no one knows, maybe there is a virus. I'm waiting for the results of the Celebrex + Valtrex study to come out. If its an amazingly positive result I might try and persuade one of my doctors to prescribe them.

@MikeJackmin, that's interesting. There have been occasions where I've gone on a short walk (200 meters) and felt like it triggered the cold-like symptoms. It's not really possible for me to do less though as I'm pretty much just doing the basic things I have to do to survive, and POTS doctors in london are telling me to do more!

 

[Helen]

I have that feeling most of the time. In some months I will get labresults from dr KDM, and maybe an explanation to these symptoms (common among PWME. He had questions about this in his questionnaire ).

 

[anniekim]

Thanks, Mike to be clear I'm not talking about the immune system feelings of sore throat, hot etc when you're overdoing it. These I know well, I am bedridden 24 seven and have to be constantly flat. Going over my limit (talking too long etc) severely increases symptoms, I'm talking more about the feeling that the body is getting a common cold virus over and above whatever ME is.

 

[anniekim]

@Helen Helen, may I ask what these questions KDM askson the questionnaire? Eg, Does he ask things like 'do you feel sometimes you are getting a cold that never comes?' Many thanks

 

[maryb]

Yes, for the past 10 months of my nearly 4 year long moderate/severe CFS 'experience' I've had recurrent cold like symptoms on and off.

I've spent about half the days (not exaggerating) feeling like I'm coming down with a cold only for it not to 'come on' fully. All year round my nose has felt never properly clear, it's always a bit bunged, and my ears are all bunged up with wax. It's been like that 100% of the year, but that's what I call it 'being dormant'. The other half of the days in the year It just sot of starts to grow into a cold again, with a slight cough + splutter/flem in the lungs, and runny nose and muscles will start aching all over and feeling really heavy, brain fog gets (even) worse, just when it feels like the cold-like symptoms are at their worse. So my CFS gets worse when these cold-like symptoms are worse. Then the cold symptoms will suddenly dry up and I'll feel a tiny bit better all round and have a few days of feeling not quite as bad (still very ill though). Then the cold like symptoms will be back for a few hours, or a day, then gone again, then back for a week, then gone for 2 weeks, back for day, etc. Never getting a break from it for longer than 2 weeks.

This recurrent cold-like symptoms started in me after catching a nasty flu (just a really bad cold) a year ago which triggered a relapse. I had rocked up to about 70% better doing 3 hours of walking a day last summer after getting neck massages from an aruvedic doctor in a 'glory period' lol, lasting about 6 weeks. Then I caught the flu, came crashing back down and was left with these recurrent mini-cold like symptoms for the past year. Ever since I've had these cold symptoms the neck massages wont work anymore.

An NHS neurologist told me he has a theory that bad infectious can make glands in the neck swell up which restricts bloodflow + drainage of the brain, which I thought sounds very interesting as I had had such a huge boost from the neck massages. He's going to try putting balloons in my neck to open up the veins, maybe that will be like a more extreme version of the neck massage.

Hoping you feel better soon.

So is that a definite that the neurologist is going to put balloons in your neck, what test results made him think this was an option if you don't mind me asking.
Its just that I've been reading another post on PR today in which a member said they experienced remission after taking nytroglycerin (sp) which opens the blood vessels up.
Why don't you go back to the practitioner for more neck massage?

 

[Helen]

@Helen Helen, may I ask what these questions KDM askson the questionnaire? Eg, Does he ask things like 'do you feel sometimes you are getting a cold that never comes?' Many thanks

I am sorry Anniekim but I cannot recall the questions as precisely as that. It was questions about immune reactions and infections, among many others, that I never had got before from doctors. Some of the answers put together could give the picture of an infection that could be coming. He also asked further in areas where I had marked for problems in the questionnaire. I felt that his questions covered my situation very well. I am really sorry to hear about your bad situation.

 

[maryb]

I know KdM doesn't ask that question.
Some doctors do ask things like, do you get colds/flu regularly since getting sick? but not as you say, just feel like you're getting something and then it doesn't materialize.

 

[helperofearth123]

So is that a definite that the neurologist is going to put balloons in your neck, what test results made him think this was an option if you don't mind me asking.
Its just that I've been reading another post on PR today in which a member said they experienced remission after taking nytroglycerin (sp) which opens the blood vessels up.
Why don't you go back to the practitioner for more neck massage?

It was a few weeks ago when he gave me a lumbar puncture. It's his own 'pet theory', highly experimental, I think its only done at Addenbrooks hospital in Cambridge, I'm lucky to have it done. I had a small improvement for a few days after the lumbar puncture which he said was a good sign and he said he'd like to try doing some 'ballooning' where he'll put baloons in different places in my neck and see how I do. Apparently he's done it on a small bunch of CFS patients and about half of them had big improvements. It's to do with ideopathic intracranial hypertension (IIH), a headache causing syndrome, which is his field of expertise. I don't get many headaches but he thinks there's a link between IIH and CFS.

I went back to the neck massager quite a few times but it just stopped working after catching the flu, once the mini-cold symptoms appeared.

 

[*GG*]

I am one of those people with ME who does not seem to get colds. However, I sometimes have the feeling I have signs of a cold but it never comes out fully. Does anyone else get this? I have felt a little nasally (but not to the extent I need tissues) and hot the last two weeks and my ME has been even worse with really bad pain (I am bedridden 24/7). I wonder if my body is unsuccessfully fighting a cold virus?

I'm sorry due to pain I can only write online very briefly so will not be able to write more but just interested in other people's experiences/thoughts. Many thanks in advance

Yes, I do not get colds often, 1 or 2 times per year? My symptoms from CFS/CFIDS/ME seem to have subsided since amping up my Vitamin D levels and starting to take LDN in 2009. Have you heard of LDN?

Had a major flare up of my symptoms in 2009, was out of work for nearly 3 months! Pain was a big part of my issue then, still have pain, just not on the scale of that episode, thank god so to speak!

GG

 

[maryb]

@Matthew Jones
very interesting, good luck with it.

it reminded me of I had a dog with a restricted oesophagus as a result of bloat, became unable to eat normally, a very good vet suggested she had a balloon inserted (under anaesthetic ) every week for a couple of months, it worked fantastically well, she was able to eat normally after this treatment and lived a long life.
Sometimes its just luck finding people who think outside the box.

 

[helperofearth123]

@Matthew Jones
very interesting, good luck with it.

thanks

 

[Kati]

This year I got my very first cold, in 6 years of disease. It surprised me as it happened in the summer, and it was very very mild, quite unusual. My father was just in for a week from out of town, and likely caught a cold in the plane coming in. So far I didn't get what he got. (Fingers crossed)

Of note also my initial illness was EBV, and at the time i had severe flu-like symptoms, sore muscle, extreme fatigue, sore throat. i felt like the flu was coming but never came. I was diagnosed with EBV a week later, with IgM equivocal. i had liver involvement as well.

 

[MeSci]

This thread about catching colds or flu (or not) may be of interest.

I used to think I was getting colds or flu frequently until I finally linked the symptoms with prior exertion, commonly about 2 days earlier, so that the symptoms were in fact post-exertional malaise (PEM). I don't seem to have had an actual fever for 18 years - until a few weeks ago, even when getting the frequent hot flushes.

I'm looking out for differences between PEM and normal colds and flu, and keep hoping to get normal colds and flu as I think that in my case, at least, it would indicate significant progress towards recovery!

 

[LisaGoddard]

I am one of those people with ME who does not seem to get colds. However, I sometimes have the feeling I have signs of a cold but it never comes out fully. Does anyone else get this? I have felt a little nasally (but not to the extent I need tissues) and hot the last two weeks and my ME has been even worse with really bad pain (I am bedridden 24/7). I wonder if my body is unsuccessfully fighting a cold virus?

I'm sorry due to pain I can only write online very briefly so will not be able to write more but just interested in other people's experiences/thoughts. Many thanks in advance

Hi, Just to add my experience. I had cold-like symptoms all the time - sore throat, some nasal congestion etc. But I also found that when my husband had a cold - a few days later my symptoms would worsen as though I was about to come down with a cold but it never progressed. Then it would return to the 'normal' level after a week or two. I'd never get a real cold. I hope you feel better soon.