Does sjogrens affect the sinuses?

[jlo211]

I have sjogrens dx 2 yrs ago. Under rheumatology once a year. Have eye drops and saliva pastilles. However, I suffer with very frequent migraines and I think they might be sinus related. I have tried everything. Sinus rinses, painkillers, migraine meds and nothing works. Rheumatologist says sinuses and dry nose are not common complaints with sjogrens?? How can that be true!! If anyone has any suggestions on how to stop these migraines I would be most grateful thx.

[weathervane]

Hi , i have Sjögrens and have sinus problems. The only other thing i can suggest is steaming, 3 times a day when its bad . I use a saline spray twice a day to try and keep things on an even keel . If you are continuing to suffer ask for a referral to ENT as nasal polyps can cause sinus problems. Best wishes i hope you can get some relief as it is awful 🌸

[jlo211 in reply to weathervane]

Thanks. I am under ENT at the moment but things are moving so slowly it’s ridiculous. Initial consultation he said he couldn’t see any issues. I’ll try steaming, thank you x

[weathervane in reply to jlo211]

I must say I didn’t get alot of help from ENT either 🙄

[harmony2]

Absolutely SS affects sinuses! Think of anything in your body that needs moisture. That’s what Sjogrens affects. I’ve had Sjogrens for probably 20 years but diagnosed for about 15 years.

Anyone who says, “oh it’s a bit of dry eyes are dry mouth” is very far off the mark. It may start that way but for some people it involves much much more. I’ve read somewhere about a third of people have that very light symptomatology, about a third of people have more serious symptomatology that causes them to they home from work outside the home or other important commitments, and the last third may have quite a severe case. I can’t remember the source of that. Possibly some rheumatologists or other clinicians have not seen many cases or don’t recognise it when they do see it so they do not know this.

Even in places you do have some residual moisture, these may be poor quality. For example: tears, oils in your skin, saliva and nasal passage mucous, vaginal fluids, digestive fluids, et cetera, often these fluids do not have the proper biochemistry. So, for example, I do have a tiny bit of my own tears which I retain with punctal plugs. But the lipid (oily) component of normal tears, from the meibomian glands, is so poor or so reduced that my tear breakup time (Tear BUT) is about two seconds. So that means within two seconds of a blink, because of my poor tear quality, my eyes have dry spots on them. This is painful and irritating (feels like I constantly have something in my eye on the surface of my eye like dust or fluff or sand). It affects me day and night. So much so, that I must use the so-called “night ointment” for dry eyes (I use Xailin here in UK) both night and day. I have not found any drops, including multiple prescriptions I have sampled, which are sufficient. This eye dryness is not just a small issue. It affects my vision and it causes me to be much more sensitive to light. It affects my driving, reading, computer and a lot of other work. Along with many other symptoms it is painful.

Constant pain, discomfort and stiffness, etc wears on one’s already limited energy.

Can you tell I get quite frustrated with clinicians who don’t know about our disorder even when they are the only known specialist out there to serve us?

Since developing Sjogrens just some of the symptoms I have include: bowel problems, urination problems, swallowing problems, migraine/headache, vaginal issues, severe itching which requires steroid skin ointment multiple times on many locations on my body throughout the day and night, joint swelling with pain, debilitating fatigue, et cetera.

Please look at following website:

-sjogrens.org (website for the American Sjogren’s Syndrome Foundation, eg, They have a silhouette of a human body with lots of symptoms written in words surrounding the entire physical body);

-John Hopkins Hospital Sjogrens website;

-NHS in England;

-Mayo Clinic;

-Cleveland clinic.

With disappointment I note to you that none of these is fully comprehensive but if you read them all you get a better picture of the whole situation with Sjogrens Syndrome.

[harmony2]

PS. Sorry I think I was so frustrated with the report that your rheumatologist said Sjogren’s doesn’t affect sinuses that I got off on that angle. I also have chronic migraine and for a number of years was on two prophylactic medicines. Verapamil and ? — I can’t think of the name of the other prescription, at the moment. They seemed to help for a while and then over time I was able to identify all my migraine triggers and get off those medicines slowly one by one. I still have some breakthrough migraines especially with hormone triggers. I have to use Rizatriptan for those. It’s a disorder of some times there is no cure for but only episodic treatment. Migraines alongside Sjogrens are not uncommon. See the website I mentioned in previous message if you’re interested.

Phooey. Sorry so lengthy. Was any of this helpful?

[jlo211]

Yes very. Thank you. I have a number of other autoimmune problems and to say that I am exacerbated with these ‘specialists’ is an understatement!!

[SusieW2]

You are so correct! My most frustrating symptom of Primary SS is dry sinuses. I have addressed some other symptoms with natural and homeopathic methods. But the sinus issue is chronic. The mucus is thick and I often have to snort to draw it out. I can often feel the sinus pressure and it doesn't entirely go away on one side.

I use non-medicated sinus spray to lubricate. Spray it and breath in several times until you can taste the spray in your throat. You can use this frequently without repercussions and it helps clear the sinuses and reduce congestion & pain.

I also use homeopathic tablets for Nasal /Sinus issues. It is a combination of inert and natural elements. I get a lessening of sinus pain within a few minutes of letting it dissolve under my tongue. There is generally no downside to homeopathic treatments and they are not expensive.

In the winter or when the air conditioning is on I run a diffuser in our bedroom. This and a high level of humidity in our house in general is very helpful. You can add essential oil to the diffuser for better results. I like the Veriditas brand but any high quality therapeutic grade oil is OK.

Good luck.

[harmony2 in reply to SusieW2]

SusieW2 you mentioned, "homeopathic tablets for Nasal /Sinus issues. It is a combination of inert and natural elements. I get a lessening of sinus pain within a few minutes of letting it dissolve under my tongue."

Please would you say what these are, if it is okay on this site to mention names of homeopathy treatments?

[SusieW2 in reply to harmony2]

I get them online from 1-800Homeopathy. They have discontinued the line I use (bought up a bunch). So you'll have to look up the new options on the site. There is a lot of information there. I don't totally understand the homeopathic thinking but it works for me. Not dramatically but distinctly. I also use Natrum Phos which is a single cell salt. It addresses my eczema and burning mouth symptoms. I can tell my symptoms reduce. I've tried Calcarea phos, cell salt, for fatigue. Less dramatic results but I figure it's not producing negative effects.

[SusieW2]

Not for me