Author Topic: When do your symptoms disappear? Is there a pattern? Mine just did, when...  (Read 3235 times)

wally

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My symptoms come and go in the same day. I had pain in my jaw that I know was a gland (had it before) and it lasted 4 hrs. then went away. Last time it turned into an infection and I had to get antibiotics. The muscle pain comes and goes at random but for me...the fatigue never seems to leave.   Wally
Female, 48 years
Primary Sjogren's Syndrome
Hereditary Hemochromatosis
take: Prozac, punctal plugs, multiple eye drops, prednisone for flares
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Prairie Gal

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Ritamarie, there are researchers working on trying to figure out what triggers/causes SjS.  We all hope they'll find out soon, but a number of AI symptoms seem to be different from person to person, so it may be a long road.   They did say at a conference I attended in April that a new drug for Lupus was going to be released later this year and they're hoping it will help SjS patients, too.

 If you're interested in participating in a clinical study, the Sjogrens Syndrome Foundation site usually lists some, along with the various research projects they're funding.

BTW, my parotids haven't swollen at any time and since my SjS Dx and I've had only two colds.  Didn't notice much difference in my symptoms, I'm sorry to say.   Symptoms do wax and wane, so I'm glad you got some relief for a while.
72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

cmacd

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I think that when I was really sick last month, in hindsight, that my paratoid gland swelling was not as predominant on my symptom radar.  Prior to the fatigue of these past few months that has been my major complaint and is what led me to a rhemy and a sjogren's diagnosis in the first place.  Does anyone know of any other condition where swollen paratoid glands is the primary symptom?

deeindiana

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My rheumy told me that antibiotics can sometimes help a little bit with SS symptoms that are caused by inflammation. I've felt the relief a couple of times with my mouth pain when I was on Keflex. Both times the symptoms came back, but the short relief was a wonderful break from the pain.

My symptoms seems to change every hour -- Crap! This hurts. Darn! Now that hurts! Egads! Now it hurts over there! -- although I normally feel better in the mornings. It's no wonder that so many SS patients struggle with depression and anxiety. It's a roller coaster of pain, discomfort, anticipation and fear.
Deb
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

Blue Kat

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I was feeling pretty darn good for a couple of weeks about a month or more ago and I thought, "The medications are finally working!"  Needless to say, it wasn't long lasting.   :-\

wiccagal

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I have noticed that when I have a cold or something else... I tend to be less sjorgrenies... I seriously do think well its giving my immune system something else to focus on.  I saw this doco on bee sting therapy were people with particular immune disorders go and get stung by bees.  The body's  reaction to the venom lessens the symptoms of the immune disease for a while..  so I started thinking that well maybe when I get a cold or what not my body's over- reacting Tcells do actually focus on other issues!! 

irish

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RitaMarie, If you had the parotid thing going on and took antibiotics with some relief that is not unusual. One thing to remember also is that our body often continues to heal even after the antibiotics are finished. Also, if you have an ear infection this changes the pressure in your eustacian tubes and causes swelling that may press on the parotid gland ducts. This pressure might have helped to "milk" the duct and the parotid swelling went down.

There are so many things that can happen. Also, if you are on another course of antibiotics for the ear it is entirely possible that this added antibiotic therapy helped finish the healing in the parotid gland. And again,infections and inflammations are so closely related in some ways that it is hard to really know what is going on.

As was said, you may be interested in joining a clinical study which would help your feel useful in finding a cure for these diseases. No one is trying to be flip about your experience. My gosh they are dead serious that they wish it would happen to them. There are so many things in the medical world that can happen, improve, get worse, change, and the list goes on and on. The bottom line is much of the time the educated people don't know what.  So much to learn, so little time, as the saying goes. But we are making progress every year. Times have sure changed in the years I have been ill.Irish

lelole

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Hi RitaMaria,

I find that when I have a cold or something, my arthritis and sjogren's symptoms seem much less evident, and I usually feel a bit better overall than when I am not "sick".

It's something that my partner has always noticed.  We joke that my immune system has finally got some work to do, being kept busy doing a proper job instead of pursuing its hobby of destroying my body!!

Leah

Epson

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My symptoms dissapear every night after an Ambien and a glass of bourbon.
To alcohol! The cause of - and solution to - all of life's problems!  Homer................Simpson

Joe S.

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:) I think it is the bourbon :)
« Last Edit: October 13, 2010, 09:49:08 PM by Joe S. »
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BonusMom

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I think I'm going to have to try Epson's nightly "cure".

Meld256

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Epson,

You are so funny... :D
57, female, Sjogren's dx 09/2010, Fibromyalgia and CFS dx 04/2009, meds: Savella, trazodone, Relafen, Plaquenil, Restasis, FreshKote eye drops, Bepreve drops, Optive Refresh, Biotene OTC products, retired/SS 12/2010

http://www.sjogrensworld.org/chats.htm
http://www.sjogrensworld.org/index.html

Woolygimp

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I definitely feel better when I'm sick.

RitaMaria

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Thanks for all your replies.  I have primary Sjogren's (high SSA and SSB levels) and have not had any joint involvement or RA thus far.  I have definitely noticed when I'm exposed to something, like when my bf gets a cold, my painful parotid glands go away temporarily.    I used to get tonsilitis every year since I was a child (I almost had them taken out), and they were perpetually swollen.  I also got a lot of terrible colds too, which no longer happens.  I have a suspicion that the chronic tonsil infections are what triggered the Sjogren's in the first place.   That, or the whooping cough I had two years ago, just before my Sjogren's diagnosis.

It's interesting to see that other people may experience the same depression of symptoms. 

BTW I usually feel much worse when I wake up in the morning, because my jaw hurts terribly and one side or the other looks like I have the mumps.  I try to chew some sugarless gum when I go to sleep.  You can get Trident gum now that recalcifies your teeth.

As the day wears on and saliva is produced, the swelling goes down, although the initial breakfast can be a very painful experience.

The painful parotids first appeared when I started with a CPAP machine that completely dried out my mouth.

sage

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Rita-Marie: You have had a lot of different things in the last few years - whooping cough which can be very serious in an adult, a blood clot in your leg - something else that can be very serious, shingles at about the same time as your bf, a diagnosis of sjogren's based on SS-A SS-B, tonsil inflammations and swollen parotids which can sometimes also be caused by mono.  I expect you had medications for some of those things and sometimes meds can give false positives on anti-nuclear antibodies and SS-A SS-B.

You should most surely have further blood testing on the viral and bacterial problems - maybe you do still have something else and the sjogren's might not be definitive.

I just checked my pulse and I am still in the land of the living  ;D  - seriously, sometimes I wake up feeling like I am all better....... and then I move!

Time to get more help from one of your doctors.
Edith