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

[Bedshaped]

I'll just chip in here and recommend this: https://www.drugs.com/ingredient/fluticasone.html
In my country it is called Flutide nasal drop. I use the nasal drop not the spray. After 1 week my smell and taste came back and I was almost like a K9 dog.
Now, I'm not a doctor so please check with your GP before getting this. I got it for Allergic Rhinitis and Nasal Polyps, and your problem might be different to mine. Anyways, it came wih my ME and I have tried so many meds before a specialist put me on this.

 

[purrsian]

I read recently that they think now that people who have chronic problems with their sinuses actually have a problem with their beneficial sinus bacteria being too low and it can't keep the bad bacteria in check. I never had sinus issues, or allergies, until I was put on penicillin 26 years ago for a tooth infection. The sinus issues, allergies, and ME/CFS all started at the same time.

I have found that when I'm going through sinus issues it does help to use the neti pot. However, I don't use it all the time as I've heard that you can over use it and wipe out the good bacteria along with the bad. I've started adding probiotics to the salt water. Supposedly kimchi juice can also help to repopulate the sinuses with beneficial bacteria. I haven't tried that yet but will the next time I buy more kimchi.

I've spent years researching and trying different protocols for ME/CFS without much success, so I've decided that for 2017 I'm going to concentrate more on allergies and sinuses. My instinct tells me that if I could find a solution for one of them, that it will be the answer to all of them. Time will tell.

Very interesting, ties in with people with ME getting candidiasis and thrush more often then they should (due to imbalance in gut or lady part bacteria). Also could relate to why it's often worse with how bad our ME is - the worse we are, the less our bodies are able to keep these things in check.

I've always struggled to use a neti pot because I find it absolutely draining on my energy. Even when my nasal passages aren't the problem (but I've still used it to try and get some salt water to entrances to sinuses and back of throat) and the water goes through easily, I still feel horrible afterwards. Is that normal and just something we need to put up with?

 

[CFS_for_19_years]

My nose sometimes feels a little stuffier after using a neti pot (or sinus rinse). After a mild cold, I was trying to get rid of mucus and thought I would try this:
1. Do the usual neti pot or saline sinus rinse.
2. Follow that with a rinse of Alkalol - you can adjust the strength to suit you.
https://www.amazon.com/Alkalol-Natural-Soothing-Solvent-Cleaner/dp/B003YFG0M0
Alkalol - A Natural Soothing Nasal Wash, Mucus Solvent and Cleaner Kit

When mucus builds and clogs nasal and sinus passages, it can be hard to breathe. Alkalol Nasal Wash – the only saline rinse with a proprietary blend of natural extracts and essential oils – provides invigorating relief from nasal congestion and sinus pressure caused by colds, flu, and allergies. Alkalol is a safe, fast-acting, and refreshingly-strong solution that leaves your sinuses feeling clean and revitalized.

Real Relief You Can Feel
With its select blend of natural extracts and essential oils, Alkalol Nasal Wash provides an invigorating sinus rinsing experience regular saline solutions can’t match. Alkalol’s unique ingredients, like wintergreen, spearmint, and cinnamon, help dissolve mucus, reduce nasal congestion and sinus swelling to help you breath better quicker.

Alkalol Nasal Wash Key Features

• Provides natural relief from nasal congestion caused by colds, flu, and allergies
• Invigorating extracts and essential oils
• Thins and dissolves mucus
• Helps clean and moisturize nasal passages
• Preservative free
• Doctor recommended for over 100 years
• Refreshingly strong

Ingredients
Purified Water (USP); Menthol; Eucalyptol; Thymol; Camphor; Benzoin; Oils of Wintergreen, Spearmint, Pine, and Cinnamon; Potassium Alum; Potassium Chlorate; Sodium Bicarbonate; Sodium Chloride; Alcohol (2/100 of 1%); Caramel Color

 

[rosie26]

On a side note, do those of you with sinus issues also get rhinitis after/during eating? I get this from eating anything, doesn't have to be hot in temperature or spicy. And it doesn't necessarily occur with specific foods (ie. some mornings I get it from my breakfast which is always the same, sometimes I don't at all). It's something that's developed later in my ME history like my sinus issues, so wondering if others with sinus stuff experience that too.

@purrsian I haven't been aware of anything that I have eaten flaring my sinuses. There probably is but I can't think of it right now.

But cold weather is a huge trigger. I notice it at 13C (55F). Not surprising to anyone, though. Cool temperatures bring on colds and flu.

 

[rosie26]

If I lie on my side then the upper nostril unblocks, even without mucus. If I roll over it shifts to the upper side again. This particular issue does not fit with sinusitis or infection, its almost certainly about constriction, and that is most likely to be vascular. Of course if an allergy or infection kicks in my breathing is even worse, and the lying on the side trick does not work.

There is an autonomic pattern of nasal constriction, first one side then another. Its entirely possible this whole thing is autonomic, with allergy or infection as added complications some of the time.

When I roll onto my side I get a very uncomfortable blocked, stuffiness as if there is some kind of congestion. I think it might be the vascular problem you mention because I don't think I am overly blocked with mucus.

And if I have a cold I find lying on my side will unblock one nostril and same when I turn over.

Both those cases are different.

 

[TreePerson]

I used to get sinus infections before I got ME. They have been better since the ME, presumably due to upregulation of immune system. I think I have had two in 24 years. I still get sinus pain and sensitivity very easily.

 

[rosie26]

Another thing to consider is the possibility that neti pots and frequent nasal irrigation may be flushing away beneficial bacteria.

I would agree with that. Maybe once or twice a week, preferably once, could be beneficial for those who feel better for it. I felt worse with the neti pot.

 

[dangermouse]

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)?

I don't know when (in the almost 11 years that I've had ME) the sinus issue began, but I've had it many years and it's awful. It's sometimes in combination with hayfever (also developed after ME) and it affects the left side of face, eye included. My cheek and forehead hurt, jaw and teeth, gums and glands swell in neck. Pain goes down left side of neck and at the bottom of my skull it gets incredibly tender. I can't eat on that side of my mouth when it's bad.

 

[arewenearlythereyet]

I've put no since I'm not bothered by sinus infections. I seem to remember having more before I got ill? Now skin infections I've got...let me tell you. Well I won't because that's not the purpose of this thread....and this thread is gross enough .....we don't want puss as well as mucus......retches

 

[Little Bluestem]

I had an antibiotic-rebound sinus infection that was probably the real start of my disorder (I generally blame the initial infection). I continued to have a lot of problems with sinus infections until I found MSM. Now I am in the continual stuffy nose, post-nasal drip camp.

 

[boolybooly]

I have had CFIDS for 30 years. I had perpetual rhinitis for about 20 of those until I stopped eating dairy.

More recently I also had recurring upper respiratory tract fluey colds which were temperature dependent which began at the time of the swine flue epidemic in 2009, so if I got a bit cold I would get a full blown bout of head cold, repeatedly. Apparently some viruses are low temperature activated.

A further manifestation of this was every year I would get a headcold with very badly swollen nasal passsage membrane just after the pollen season. Previously I had very bad seasonal grass pollen allergy causing asthmatic hayfever which began the same year as ME CFIDS onset (with another recurrent virus), though this initially severe allergy attenuated over 20 years and improved more when I gave up dairy, to the point I could treat it with loratidine and didnt need anti-asthmatics.

I later discovered that loratidine causes a side effect of upper respiratory tract infection in the young. So I stopped using it and stayed indoors and took zinc which helped a little and showers and nasal salt water washes whenever exposed to pollen and the allergy has been manageable. But my post summer colds and recurrent colds have (touch wood) stopped too. It seems loratidine was somehow suppressing my immune system and causing these recurring summer head colds every year with very pronounced nasal membrane inflammation / polyps after some weeks of use.

My other virus(es) still recur but the headcold one seems less problematic now than it was for the last 7 years since I stopped dairy and stopped loratidine.

 

[alex3619]

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

I had this with one tooth. First acute sinusitis, then chronic sinusitis. It turns out some upper teeth are close to sinus tissues. I also have breathing issues such that sometimes I can only breath through my nose. I am glad they never happened at that time, as being unable to breath through either nose nor mouth might have been a problem.

 

[SilverbladeTE]

Has serious problems breathing through my nose since I've had M.E., one nostril mostly tight/closed
And I choke very easily as well now :/

 

[alex3619]

And I choke very easily as well now :/

I have a friend who is a long term patient who has similar issues. They can be life threatening at times. My own problem is more like severe bronchial spasm, I simply cannot draw any breath at all. I found resveratrol mostly blocks this breathing issue.

 

[rosie26]

It turns out some upper teeth are close to sinus tissues.

A relative of mine had trouble for a few years with a hole through to a sinus cavity after having had an upper tooth out. It took quite a while to mend and then would break open again. Seems fine now though.

 

[SilverbladeTE]

A relative of mine had trouble for a few years with a hole through to a sinus cavity after having had an upper tooth out. It took quite a while to mend and then would break open again. Seems fine now though.

I had same thing hence two sinus infections :/
Delays caused by asshole bureaucracy and not being able to go some medical checks (since one can only go on a "good day" and those can't be arranged to suit!) meant it was 6 months to I got surgery

Hospital 400 yards from my home and asshole bureaucracy had me going to Glasgow and Monklands instead, grrr! Docs I saw there were horrified and apologetic over that and got the operation in that local hospital, jeesh

 

[SilverbladeTE]

I have a friend who is a long term patient who has similar issues. They can be life threatening at times. My own problem is more like severe bronchial spasm, I simply cannot draw any breath at all. I found resveratrol mostly blocks this breathing issue.

Yeah when I get infections breathing becomes difficult, and I have to be careful eating or I get a sort of "air lock" and can't swallow OR breathe, had to make myself puke a few times to clear that, ugh!

 

[rosie26]

I had same thing hence two sinus infections :/
Delays caused by asshole bureaucracy and not being able to go some medical checks (since one can only go on a "good day" and those can't be arranged to suit!) meant it was 6 months to I got surgery

Hospital 400 yards from my home and asshole bureaucracy had me going to Glasgow and Monklands instead, grrr! Docs I saw there were horrified and apologetic over that and got the operation in that local hospital, jeesh

You just reminded me of an appointment I am waiting for at the hospital to remove a skin cancer from the top of my shoulder. It has started to grow and really needs to be removed, now. When I saw the dermatologist 4-5 months ago the skin cancer growth didn't look urgent, now it does and I am getting nervous.

Like you, I live very close to a hospital and because of that I have to try to remember to call them and ask if they could call me if there is a cancellation. That's something I must do in next few days. But I know what you mean about never knowing if you are going to be "good" on the day.

 

[Pyrrhus]

Related discussions:

Is sinusitis a thing with us ?
https://forums.phoenixrising.me/threads/is-sinusitis-a-thing-with-us.83298/

Fatigue & sinusitis
https://forums.phoenixrising.me/threads/fatigue-sinusitis.20462/

 

[Arius]

I've had chronic sinusitis for about 27 years and CFS/ME for the past 7. I've tried to treat the sinusitis twice with minimal success. The second time was recently. I would say I nearly eliminated it, but not quite. I still use my neti-pot daily.

And my other friend with CFS/ME has a chronic sinus infection situation as well. Apparently the infection got into the bone and cannot be healed.

Anyway, I would say I've reduced my sinus symptoms by maybe 70% in the last year with no discernable improvement in my energy, brain fog, etc.

Oh, and others reported, I also get a runny nose at meal times for no obvious reason. I am quite confident I've eliminated all possible allergens from my diet, but something about eating makes my nose run. Maybe the chewing massages my sinuses and gets things moving? I have no idea what that's about.

It's also an issue if I come in from outside during the winter.