New and Flare Advice

[SonicEm]

Hi All,
I am a new member. I am currently undiagnosed but have a lot of SS symptoms. I saw a Rheumy yesterday Friday - he did not think I had SS, could not be sure. Will get blood test results Tuesday. Am searching for another doctor to get a second opinion.

I believe I'm in the middle of a flare. I've had a burning sensation in my chest, and today more than normal fatigue. Slept 6 hrs last night without any sleeping aids so that was a good night for me. I have not been sleeping well for the past several nights due to symptoms like dry throat, mouth, eyes. I have some products that are helping but I still am bothered at night in particular.

Funny thing about the chest burn is that it comes and goes. Last night after dinner, it was better. This morning much worse. No shortness of breath, just intense burning pain.

Am trying not to get too anxious or stressed as that seems to make things worse too. Am wondering if this is a bad sign, I should contact my Dr (it's the weekend so they will point me to the ER) or ride this out?

[susan]

Burning pain in your chest makes me wonder if you should rule out a cardiovascular problem. Is this a symptom you have had before?

[Pisces24]

The burning made me think of acid reflux too. Mine doesn't burn but sometimes about 4 hours after I eat I feel the food is 1/2 way up my chest. My gp said it was acid reflux and to take Mylanta when I get it.  IF I find I seem to be using a lot of Mylanta, he'll put me on med for it.

For me the "pointers" or if you want to call it the AHA moment was when the immunologist tested my blood:   ANA,  SS-A and SS-B.  I am off the charts with ANA and SS-A & -B are very high also. Course I have other symptoms, etc. but the drs like to point at some test and go AHA! 

I had a Schermer's test - which is basically a small strip of ph paper is put on your lower eyelids and dr times it on how wet it gets. Not painful. I got a 0 and 1 on my eyes for that. I know there is a salivia test but not sure of name.
A humidifier helps moisten the air. We have had a very dry winter here in eastern Iowa. I would recommend that and sinus rinses (nettipot) which is basically a bottle w/a hole in the top you fill with sea salt (Not iodized!) and distilled water. It helps rinse out the germs. Dry sinuses can make your throat feel dry too.

With the shortness of breath I would definitely call your dr. It could be anxiety/stree or it could be something else. I wouldn't wait around on that. If you can't see your Rheumy ASAP, call you regular dr - they can usually get you in if needed and this is needed. Good Luck!

[eyeamdry]

I am with the folks who have GURD.  I get this painful burninng in my chest. (to be specific between my breasts)  When this began, I went to ER because I thought I was having a heart attack.  Since I take so many pills for SJS, the dr put me on a stronger pill Prilosec.  It is better, but I still get the burns.  I will also chew a bunch of tums when I get this.  It takes about 2 hours to run it's course.  If my husband rubs my back, it helps.

I have a feeling this comes on after I've eaten something I shouldn't have or had too many Diet Cokes and it probably tears my esophagus up.  Trying to throw you some ideas.  Lucy

[Joe S.]

Welcome to the forum SonicEm. Since it could indicate heart problems or heart burn, it would be worth while to have a doctor check it out.

[SonicEm]

Thanks for the advice!

I do not have shortness of breath. Now that I was tipped off about GERD and read the symptoms, it sounds more like that. There are food triggers so I'm paying attention to that and taking Mylanta. This morn it seems to have subsided a bit, so I am encouraged.

The main problem I'm having is sleep disturbance due to my symptoms. Waking up with a dry throat sucks. I have throat sprays, a Rx saliva replacement gel which does help my dry throat a bit, plus Orajel by my bed. Drinking water during the night makes me pee so I try to limit that.

I am now back on sleeping meds - low dose Klonopin of .125mg or below. I was off for a week and that's when the SS kicked in. When my blood pressure is up, I have to take Propanolol. All of these meds seem to have a drying effect. Are there any other alternatives.? Or should I think about Salagen or Evoxac?

[A66eyroad]

Welcome, Sonic!

I take Carafate for GERD. It's the best medicine on the planet! You need a script for it, but any PCP will give you one.

I hope you get as much great info as I have from this site. If I have any specific questions, the search box on the top right is the first place I go. But there is no question too big or too small! And if you see someone else has asked a question, feel free to jump in and post if you think you might be able to help.

[eye2dry]

hello sonicEm

It probably is more likely to be GERD...however...many a person (men and women) have shrugged it off as that and have had a heart attack.

I say..err on the side of caution and see a dr.

hoping this goes away for you..with NO return.

eye2dry