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Living With Sjogren's / Re: Facial rash
« Last post by Carebear on March 17, 2019, 10:22:00 PM »
Hi Deb,

I have a similar sounding rash.  Mine is rosacea.  It can spread across my nose, and on to my chin, cheeks and forehead.  When it's at it's worst it is so painful, feeling prickly and burning. 

As I type this I realize that since taking gabapentin my rosacea has cleared up.  There may be no connection though.
Living With Sjogren's / Re: Possibly heart issues
« Last post by Carebear on March 17, 2019, 10:15:12 PM »
Thank you, Irish.  That's good advice.

I think it was you who said many years ago, "I don't worry until the doctors tell me to worry".  Or something like that.  Or maybe you didn't say, but it sounds like you, doesn't it?  Good advice, that I follow regularly.  Yes, my family doc is on the ball.  Would the EKG note the neuropathy in the heart?  I'm not clear on what it is measuring.

Oh, Bucky.  I had no idea you went through all that.  No, I haven't recently had a stress test.

Your description is exactly what I experience - the pain or pressure in the middle of my chest.  It wakes me up a couple of times each night.  And when my heart seems like it is skipping a beat, I cough too.  Another very strange thing happened the other night.  I got settled in bed, rolled over on my side, and my heart started pounding at double speed.  It returned to normal about 30 seconds later.

Bucky, my TSH bounces around like that about every 5 or 6 years.  Then it just settles down.  Just like you.  I have never gotten an explanation.  Not even from an endocrinologist. 

Well, you are all helping me a lot.  And if I get to blame it on Sjogren's, I doubt any of us will be surprised.

Enjoy the upcoming week.
Living With Sjogren's / Re: Possibly heart issues
« Last post by Bucky on March 17, 2019, 07:53:52 PM »
Carebear - sorry to hear you've been experiencing more than usual tiredness.  One of the first things I have checked if I'm feeling more tired is my TSH, as I have under active thyroid.  I've had times where the numbers are all over the place too, and never really found out why.  They would adjust my meds up and down and then it would finally settle down.

Have you ever had a stress test?  I found out at my test that at times I have a double beat, and occasionally a triple beat.  I can feel the triple beats and it makes me cough - which to me, seems like it gets it back in regular beat rhythm. 

I've set off alarms before when my heart beat got in the 40's when I was in out-patient at the hospital for observation in 2008.  At that time, I was having pain in the middle of my chest, especially when taking a deep breath, which they ruled out as not a heart attack, but was diagnosed with chest wall inflammation.  Was it caused by Sjogren's?  I don't know, but I would suspect that it was a contributing factor.  With Sjogren's we do tend to have lots of inflammation.

I hope you find some answers to what is going on with you.

Take care,
Living With Sjogren's / Re: Help with EYES: What now?
« Last post by irish on March 17, 2019, 06:54:16 PM »
That is really interesting about the doxycycline drops. Doxycycline is one of the antibiotics that have an anti-inflammatory effect. Every time I take doxycycline for a sinus infection I would feel so much better all over my body. Good to know that this is something to be used on the eyes. Hope others can read this thread and find out the good news. Irish
Living With Sjogren's / Re: New Member - Male 33 UK
« Last post by irish on March 17, 2019, 06:49:06 PM »
It is good that your lungs sound good and your O2 sat is good. However, I think you are right in your thinking to pursue a CT to rule out anything that might be give you a good picture for comparison in the future. Also, our bodies are so weird at times and we can show up with things that doctors don't think of. That is just the way it is with people with autoimmune diseases. Good luck. Irish
Living With Sjogren's / Re: Possibly heart issues
« Last post by irish on March 17, 2019, 06:38:49 PM »
I would hope that the referring doc has filled the cardiologist in on your health history. The one thing I would want to ask the cardio is if these symptoms are related to the Sjogrens. We have had some people on this site who have had to have pacemakers and/or a defibrillator.

Sjogrens can cause some neuropathy of the nerves to the heart causing some weird symptoms. Irt is good that your doctor is taking this seriously and getting you to the right person. Take it easy as you wait for your appointment. Good luck and please keep us informed on how things are going. Irish
Living With Sjogren's / Facial rash
« Last post by Deb 27 on March 17, 2019, 04:32:40 PM »
Does anyone else get red rashes on their face? It kind of looks like a lupus rash but it's also on my forehead. What do you do for it? Thanks!
Living With Sjogren's / Re: New Member - Male 33 UK
« Last post by Kathy57 on March 17, 2019, 11:49:43 AM »

I had/ have symptoms like you describe and I was diagnosed with asthma.  Many people with Sjogrens can develop asthma.  If I get any type of upper respiratory infection, it really aggravates it.  I try to have a vaporizer going all the time as moisture really helps me.

My sinuses are horribly dry and this causes thick dry mucous which doesn?t help at all.  Dry heat, strong wind, and fans really dry me out and make me cough. 

I use nasal irrigation?s with Budesenide daily and I actually think it helps.  It?s a steroid and you need a prescription but it cuts down on inflammation and the saline nasal rinses help moisturize and gently clean out the gunk.  My ENT ordered this for me.   I have steroid inhaler too but I try not to use both steroid meds at once as it predisposes me to thrush.

Welcome to the forum.  I?m so sorry that this has happened to you but you will learn how to deal with it and minimize the symptoms.

Sounds like you have a great GP.

Living With Sjogren's / Re: Help with EYES: What now?
« Last post by Tharrell on March 17, 2019, 09:34:01 AM »
It helped clear up the blepheritis which in turn allowed the natural oils to again mingle with the tear film and thus it helped the dry eyes. Cause and effect.
Living With Sjogren's / Re: New Member - Male 33 UK
« Last post by Joe S. on March 17, 2019, 05:53:23 AM »
I have a simple meditation that helps me. I get into a comfortable position and close my eyes. With my eyes closed, I look to the top of my forehead. As I breathe in I think, "I am". and as I breathe out I think, "calm". I try to repeat this for 15 minutes.
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