Author Topic: How much do your symptoms fluctuate?  (Read 194 times)

Deseree

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How much do your symptoms fluctuate?
« on: December 01, 2018, 09:26:04 PM »
Hi everyone, I'm just curious about how much your symptoms fluctuate. I seem to have days where the dryness is horrible and other days where it's much better. I'm never 100%, but like today, it would almost be easy for me to forget I have this it's so mild (so thankful for the good days!). Maybe it's because I'm still in the early stages, but I'm wondering how normal this is for everyone. Thanks!
30 year old female. Positive ANA and RF. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

finallyadx

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Re: How much do your symptoms fluctuate?
« Reply #1 on: December 02, 2018, 06:46:24 AM »
YES!!!  Unfortunately I have some days that are just horrible (like today) and others that are much better!

Sending positive thoughts and prayers your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Sharon

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Re: How much do your symptoms fluctuate?
« Reply #2 on: December 02, 2018, 09:40:32 AM »
Yes. My sicca symptoms are always there but fluctuate between "bad" and "intolerable".
 
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

warmwaters

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Re: How much do your symptoms fluctuate?
« Reply #3 on: December 02, 2018, 09:41:54 AM »
Lots of fluctuation. And the frustrating thing is you will spend a lot of time trying to figure out what you did (or didn't do) that leads to the good days. Unfortunately, the bad days sometimes will just come, not matter what you do.

I don't want to underestimate trying to do things that help, but understand there will be days where the dryness or pain just happens.

I just had two good days, and it was great.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

irish

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Re: How much do your symptoms fluctuate?
« Reply #4 on: December 04, 2018, 12:04:25 AM »
If there is a good thing about Sjogrens it is that it is fickle. Here today big time and the next day it can be a nagging thing that is much less bothersome. The problem with this is that life is hard to plan cause you never know how you will feel 2 hours after you get up. I find that immediately in the morning I can often feel "fair" and in two hours I can't get off the couch I feel so lousy. A crazy way to live isn't it. Irish

araminta

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Re: How much do your symptoms fluctuate?
« Reply #5 on: December 04, 2018, 02:11:52 AM »
Just as others have said, the symptoms are always there, but more bearable some days than others.   Usually there seems to be absolutely no rhyme or reason to the changes.   However I have noticed that stress makes things much worse.   For instance I always come back from holidays now with either (a) a rash, (b) a nervous twitch, (c) red eyes that make me look as if I've been crying the whole time, or (d) any combination of these.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

bluegardenia

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Re: How much do your symptoms fluctuate?
« Reply #6 on: December 04, 2018, 03:31:03 PM »
cold weather  and wind are bad for my eyes and dry mouth. so spring and summer are better for me. lack of sleep and stress are the triggers for me.
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds