Have you always had sinus problems with infections all throughout your ME?

[rosie26]

Just wondering if there is a subgroup of ME who gets the constant sinus problems with infections whenever you overdo it. I have had this all the way through my ME. I have it quite bad at the moment, sore throat with it, also. I don't want to take antibiotics because of the bad reaction I had last year to two antibiotics that I was given. I have never had problems with antibiotics until then.

It's summer here and I am going try and see if I can get to the beach at least twice a week and gently soak in the seawater and get some up my nose and see if I can get some control of this sinus infection. I haven't been to the beach for years, it's only a half hour by car or 45 minutes by bus. The journey always puts me off but I guess if I can lie down at the beach under a tree that will help rest me for the journey back home. I think this is my only other decent option, seawater.

How many others of you have had this sinus problem all the way through? Anyone else get the aching in the front sinuses of the face (cheeks)?

 

[CFS_for_19_years]

I had chronic sinus infections at the start of this illness. My allergist told me that chronic sinus infections were a sign of allergies being out of control and that the best course to take was allergy shots. It's been at least 20 years now since I've had a sinus infection.

Before I went on the course of allergy shots, which took a year or two, I saw a naturopath several times who was able to cure me of the chronic sinus infection I had then. I don't recall what she gave me, but she brought a stop to them at that moment in time. However, I did follow up with the allergy shots.

If you have allergies, for now at least you could try rinsing your nose with a Neti pot once or twice a day to remove allergens from your nose.

I don't know what horrible reactions you had to antibiotics, but they must have been pretty bad to put up with chronic sinus infections now.

 

[Valentijn]

I have chronic sinus problems. But I stopped getting sinus infections when I went on antibiotics for Lyme and Bartonella.

 

[alex3619]

I have answered no because the question asks "always". If it asked "often" I would answer yes. I always have some sort of sinus issue, but its not always related to infection. Indeed my hypothesis is that a subgroup have some kind of vascular issue that resembles sinusitis, but isn't, and so is not easily treated.

 

[Thinktank]

I have chronic sinus inflammation in an obstructive way, but never had a sinus infection since ME.
I believe that my sinus inflammation stems mostly from food allergies and (pseudo) intolerances.

 

[hellytheelephant]

I have had sinus problems on and off throughout, together with persistent sore throats, although I am finding that the GF diet has really helped to eliminate this.

 

[SilverbladeTE]

not infections, but constant sinus problems: harder to breathe through them, gotta dig the bogies out like hacking coal to keep breathing

though when I got two teeth out and in both cases they lead to severe sinus infections
infection + M.E. = horrendous

 

[dannybex]

Ditto what @alex3619, @Thinktank, and @SilverbladeTE said. Sinuses never really drain well at all, nose is very stuffed, dried (esp in the mornings) and blocked up w/thick mucus. Even when I was a kid when I got a sinus infection, it was always thick and gluey, and w/a deviated septum, it was always a challenge to get that wad of gum out, but when I did, it looked like (spoiler alert!) a mass of mucus and (almost) brain matter.

But like Alex, it comes and goes, but is there most of the time. It most recently flared in early 2013, and got worse after abx, suggesting fungal issues and/or worsening of food intolerances as a result of killing off beneficial bugs w/the abx.

 

[perchance dreamer]

I have chronic sinus problems, too, in spite of surgeries and twice a day irrigations at home. I get thick mucous, and bacteria cling to it.

I have had both pseudomonos and a fungal infection for some months now. I've tried nebulizing medicine and am now using medicine in my sinugator, but don't appear to be getting better.

My ENT said since the topical treatments haven't worked I should go on Cipro since it and Levaquin are the only 2 meds that eradicate pseudonomos. I'm doing research and trying to figure out if the cure is worse than the disease.

Sinus ozone treatments did get rid of a sinus staph infection before, but they haven't helped with the pseudonomos.

 

[perchance dreamer]

I wanted to provide a link to the NeilMed Sinugator. I think a lot of us with sinus problems irrigate our sinuses, and I've found this much more thorough than using either a Neti pot or the squeeze bottle.

Some people reviewing on AZ have found that the sinugator stopped working, but I haven't had a problem and figured it's not just a huge investment, anyway. I don't advise dropping it on the floor, though, the way I did with my first one:

https://www.amazon.com/NeilMed-7-05...qid=1482774135&sr=1-3&keywords=sinugator&th=1

 

[MountainMonkey]

it looked like (spoiler alert!) a mass of mucus and (almost) brain matter.

Ah, yes.... The orange-grey brain matter looking blob...

I've had sinus problems for 35+ years.

 

[Mel9]

I have chronic sinus problems. But I stopped getting sinus infections when I went on antibiotics for Lyme and Bartonella.

Me too

 

[perchance dreamer]

These sinus problems really suck. When my sinuses are particularly clogged such as when I have an infection, my sleep is seriously affected. My ENT explained that when you don't breathe well through your nose it over activates the sympathetic nervous system, which affects sleep.

@MountainMonkey, your avatar pic is quite something!

 

[MountainMonkey]

@perchance dreamer Thank you - I think

 

[perchance dreamer]

@CFS_for_19_years, do you remember if you reacted with increased symptoms when you had the allergy shots?

I started on prescription sublingual allergy drops in Nov. I do get increased mucous and congestion, so my allergist had me back down on the number of drops and lengthen the titration schedule.

 

[CFS_for_19_years]

@CFS_for_19_years, do you remember if you reacted with increased symptoms when you had the allergy shots?

I eventually had fewer symptoms (plugged up ears and nose) when I had the allergy shots. The only other reaction I had to allergy shots was a local reaction to the shot itself - an itchy arm.

 

[rosie26]

I have answered no because the question asks "always". If it asked "often" I would answer yes. I always have some sort of sinus issue, but its not always related to infection. Indeed my hypothesis is that a subgroup have some kind of vascular issue that resembles sinusitis, but isn't, and so is not easily treated.

I was going to give an extra option Alex but decided against it. I wanted to know more whether it was a problem high on the list or not, kind of thing, for other MEs.

 

[anne_likes_red]

I had none 'til I got mono 14 years into my illness. Since then severe sinus problems plagued me...ie: debilitating headaches and repeat infections on the right side.
I have not had many problems the last few years (except in Scotland for some reason!), as I'm doing much better overall but I believe some low level sinus issue is still present...
(I didn't answer the poll because I haven't had obvious sinus problems the whole duration of my illness.)

 

[belize44]

I've had sinus problems on and off since becoming immobilized by this disease. I also have a deviated septum. Part of the problem that aggravates it all is dust mites! Since our apartment has carpeting it has been an ongoing battle which I have finally surrendered to. I just don't have the energy to keep after it all. Most of my issues are inflammation, sleep Apnea, and being hypersensitive to many antibiotics.

 

[rosie26]

I'm going to be a bit out of order replying everyone, brain fog. And it could take a week or more. Thanks for all your replies.