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Marybeth Jarubas

Face and sinus issues.

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Hello

 

I was hoping just maybe I could find some help.  I was on here a bit ago and everyone is very supportive.  

 

I have an Anticentromere of >8.  My Rheumatologist diagnosed me with limited scleroderma.  I am not sure what to expect.  Not much to go on here.  I am accepting it if it comes to pass in manifestations.  I have had very low Vitamin D and that went up to standard.  My knees are stiff, toes and feet get pain, but very mild and fingertips a bit tingly at times.  The stuff travels around, so who knows?  Had PH test but they found mild bronchial dilation whatever that means.  My rheumatologist said she saw no systemic activity.  Same symptoms from last fall when diagnosed.  I can accept all that.  Now this is where it gets interesting.  

 

I was was given very large doses of Vitamin D.  Then I started to develop a sinus issue.  Never had them in my life.  I take Lisinopril/HCTZ for blood pressure currently.  The doctor said I don’t have Sjogren's, so what's up with my sinus?  Saw ENT and had no allergies, but may be Sinusitis or Rhinitis.  Say what?  Okay, with that said and done I still have a sinus issue.  Lots of things cross my mind.   Then I started to get anxiety attacks.  Well POA for my mother in another state, full time job, diagnosis, just a lot.  So it goes and everyone is trying to get me to take buspirone; probably will start now. 

 

Here is the question.  Is this face or sinus pain possibly attributed to the scleroderma?  Or is it inflammation or could it be face tightening starting?  It seems to happen every day and can make me a bit wobbly.  Today it feels a bit like a vice right across my forehead and down my nose.  Pressure.  So I guess I am at a place now where I need to ask, is anyone out there having same thing or explain what this face tightening is?  Sometimes my scalp is sensitive and I can’t wear my hair up anymore.  Weird and more weird.  Of course I have had carpal tunnel for years and I am losing hair from who knows what.  I am post menopause.  The bane of my existence is this stupid sinus thing.  

 

So there is my tale of woe. Any input would be great and thanks.

 

MJ

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Hi Marybeth,

 

I'm sorry to hear that you're suffering with unpleasant symptoms. Sinus problems are not normally a common feature of scleroderma, but that doesn't mean to say that they don't occur. Skin tightening can cause facial discomfort, but the problem with suffering with a disease like scleroderma is that it's very easy to attribute every sign and symptom to it and it can blind one to any other health problems.

 

The best idea is to consult your doctor/scleroderma expert with any new and worrying symptoms, as the sinus trouble may be a sign of something else, which does require professional help and advice. It also may be worth you considering counselling to help with the anxiety with which you're suffering, as anxiety can cause all sorts of physical and psychological problems and can certainly exacerbate any autoimmune problems like scleroderma. 

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I take beconase ( beclometasone dipropionate) for my sinus issues.  They occurred long before my SSc was diagnosed, but I get the feeling that they may be related.  

 

My general practitioner originally diagnosed Rhinitis, hence the beconase prescription.  It does help though, but most of my pain is in my ears.  Apparently, the build up in the tubes from my nose to my inner ears is putting pressure on my eardrums.

 

Several other brands of cortisoid nasal sprays may of course be equally effective.

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I would take a look around at environmental type things. Anything new you're eating, cosmetics, hairspray, chemicals, or do you live in an area of farming land and orchards that may be spraying? I grew up in the city, and later on moved to a rural area. I have NEVER had sinus issues in my life, but do now and no I don't think it has a thing to do with my Scleroderma. But when I moved here it seems everyone has "allergies". I inquired about it and one doctor told me "If you live here long enough you'll have problems too" (because of orchards and all the blooms, chemicals that go along with). As we get older things can just change.  I would be really surprised if your sinus issue was related to your diagnoses, but weirder things have happened! :lol:

But I do know how frustrating, and annoying it can be so I'm sorry you are dealing with it. I would ask your ENT what you can take to help, and then follow up with him/her after you've tried the treatment for awhile. I say this because that is exactly what I did and I wasn't getting better, so they did a sinus CT and guess what? I had a huge FUNGUS ball taking up the entirety of my right maxillary sinus.  I had to have surgery. I am a nurse, so I do know a little bit about what I'm talking about. haha, but I hope you can get some relief I feel for you!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Marybeth,

 

As it happens, it is possible to have sinus problems related to scleroderma, according to scleroderma expert Professor Chris Denton of the Royal Free Hospital. Please see How Post Nasal Drip Can Be Related to Scleroderma

 

That said, treatment for it would likely be the same as treatment for any regular sinus problems. Importantly, a sinus problem would *never* be considered part of the diagnostic criteria for scleroderma, so scleroderma itself is rather a moot point when dealing with your doctors. And it is far more crucial to consider all the most common causes first, lest you overlook something more easily fixable. 

 

Like, for example, Sweet's rather amazing case of a huge fungus ball!  What if she had just chalked it up to "only" scleroderma and thought nothing could be done?  She could've suffered the whole rest of her life -- unnecessarily. 

 

I've had lots of nose/sinus stuff that for me, is probably more related to Sjogren's than scleroderma, but scleroderma can also cause dryness, so who knows?  Sinus problems also cause a feeling of pressure and that should not be confused with scleroderma skin tightening on the face.  When the skin is tightening, it is felt overall, where it is occurring, and not only in the sinus area. Any listed scleroderma expert should be able to distinguish skin tightening from sinus issues. (And, it is possible to encounter both at the same time, of course. But perhaps that is less likely.) 

 

I've been affected by microstomia, which caused my mouth to become smaller. That was a painful process that involved a lot of TMJ (temporo-mandibular joint pain) and tooth loss and alignment problems.  Now my mouth is child size.  But the positive side effect of scleroderma affecting my face is that I still look younger than my years and I've been fortunate in that my facial involvement settled down a few years ago. 

 

I've also had plenty of sinus problems caused by normal run-of-the-mill sinus infections and allergies. Also, allergies can blossom unexpectedly!  I developed an allergy to white ash trees in the springtime -- when I was over 50.  And some years, I am not bothered by it at all. It is also common to develop new allergies within so many years of moving to a new place.;

 

Hopefully it's something that can be sorted out soon, and having you feeling a bit better again!  Remember, we're always here for you. 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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