Author Topic: What are your flare symptoms?  (Read 1870 times)

gurs

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What are your flare symptoms?
« on: August 07, 2011, 06:27:44 AM »
Just curious what others go through during your flares??? Here is mine...

always starts with a headache or migraine
Dizziness-bad!
extreme, extreme fatigue
joint pain all over-esp hands, feet, legs-neuropathy
stomach upset
shortness of breath
crabby ( ha ha) mood changes
allergies/sinus seems to be worse
hair loss seems to be worse-but always losing hair anyways
Hormones seem to be off kilter...more hot flashes, my normal lose dose estrogen seems to aggravate me even more.

I take more medrol and motrin/tylenol...but NOTHING helps...ughhhhhhhh

gursie
« Last Edit: August 07, 2011, 06:44:15 AM by gurs »
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Joe S.

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Re: What are your flare symptoms?
« Reply #1 on: August 07, 2011, 07:32:25 AM »
The flair determines symptoms.

Sjogren's: dry eyes, mouth, sore glands and ears, dry A$$.
Fibro: muscle pain
Arthritis: joint and connective tissue pain.
Migraines link to all of the above.
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gurs

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Re: What are your flare symptoms?
« Reply #2 on: August 07, 2011, 07:38:27 AM »
oh yeah, forgot the extreme-dryness everywhere..thats a given right!!
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

mshistory

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Re: What are your flare symptoms?
« Reply #3 on: August 07, 2011, 02:12:19 PM »
FATIGUE - oh gosh, that is the worst for me right now.
Joint pain
Dizziness
Nausea
sore throat
hair loss worsens
dry cough
sore gums or sores in mouth

Some of these symptoms are constant or keep coming and going - maybe because I haven't been on Plaquenil long enough for it to actually improve any of my symptoms.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

katyjo

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Re: What are your flare symptoms?
« Reply #4 on: August 07, 2011, 04:05:44 PM »
I always have dry eyes.

On a bad day,
headache neck pain
pain on shoulders, torso front and back,
hip pain, knee pain, feet and ankle pain
loss of interest

Most days I am pain free with only some tightness in the morning.  no meds yet.

hollowoakfarm

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Re: What are your flare symptoms?
« Reply #5 on: August 07, 2011, 04:59:02 PM »
Seriously increased joint pain.
Cardboard mouth
nosebleeds
eyes too dry to open for more than a few minutes at a time.

Edited to add...I forgot the impacted salivary glands.  How could I ever forget those!
« Last Edit: August 10, 2011, 06:22:34 PM by hollowoakfarm »

Navigator

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Re: What are your flare symptoms?
« Reply #6 on: August 07, 2011, 06:04:06 PM »
I haven't had a real flare since I got used to plaquenil.  Without I had pains moving around neck and shoulders, excruciating headache, toothaches, tingling in my lower arms, pain in pads of feet.   Now... I always have to deal with dry eyes and mouth but I know when my body "would" be primed for a flare when I get a headache in a certain spot...top back of my head...which is no where anyone would get a headache...but it doesn't progress any further.

The tingling and pains etc are all gone. How long that will last is anyone's guess but I am not complaining.
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Luna

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Re: What are your flare symptoms?
« Reply #7 on: August 07, 2011, 08:42:12 PM »
constant problems that I do not consider flares, cause they never go away are:
Pain and swelling in right thumb, wrist and middle finger.
Pain and swelling on side of left foot.
Dizziness, dry mouth,nausea,
Back and neck pain.
Brain fog
 Headaches are regular too.

What I consider flares are:
Worst pain and swelling in thumb, wrist and middle finger to the point I cannot use them at all.
Lower back pain is so bad I cannot walk.
Top of my foot will swell, start putting off heat and throb with pain. I cant put weight on it when that happens.
Toe will do the same as the top of the foot. Knee swells and does the same as foot.
nose bleeds, sinus infection.
Fatigue feels like I either got hit by a truck or have a bad case of the flu.
Tingling and numbness in arms, hands , legs and feet. (happens daily) just not all day
Muscle weekness (which happens daily) just not all day.
Muscle twitching
I think I got it all.

Patze

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Re: What are your flare symptoms?
« Reply #8 on: August 07, 2011, 09:22:41 PM »
Good question Gursie,

Lets see....  the exhaustion gets worse, as do my eyes, the left side of my head aches and pain, my skin gets hyper sensitive as well (fibro pain goes from 7 out of 18 points to 15/16 out of eighteen).  Also the dizziness increases, and the sleep cycle gets worse, much worse, yadda, yadda, yadda...ugh.


Patze
« Last Edit: August 08, 2011, 06:38:10 AM by Patze »
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eyeamdry

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Re: What are your flare symptoms?
« Reply #9 on: August 08, 2011, 02:30:40 AM »
I am not sure if I get flares or not.  Sounds good, eh?  Not.  I just am not sure what a flare is for me, unless I am completely down in bed and can't move and only get out to use the bathroom.  I hurt all over, chills, etc. but am not sure if that's just part of SJS but worse on those days.  I remember one day two years ago I could not get out of bed.  Everything was on fire and painful. 

My knees were both bad. I have one partial replacement and the other needs a full TKR.  I slowly got out of the pain funk, but my left knee never got better.  After a year, I had a couple of cortisone shots and it feels better.  Shots wearing off and I'm back to the knee replacement, which is not necessarily SJS related!  I can say on days when I don't feel well at all "I am in a flare" so that others may understand that I am not my ornery self, just moreso.  I honesly can't tell if I have flares when they are etc. I have had SJS 4 years.

I take MTX, Plaquenil, Lyrica and some other stuff.  Lucy

gurs

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Re: What are your flare symptoms?
« Reply #10 on: August 08, 2011, 06:08:45 AM »
I get alot of the left sided head pain too....then, I have a horrible time trying to sleep for the next 3-4 days usually. I also noticed a very "Toxic" feeling that I normally have, but it gets super bad during flares. Ive been in one this last week and Im just miserable. My joints also hurt (hands and feet) and they are itchy? my mom said my face is extremely swollen, but it always is now because of the steriods increasing or inflammation.

thanks guys!!

Gurise
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

A66eyroad

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Re: What are your flare symptoms?
« Reply #11 on: August 08, 2011, 10:53:54 AM »
Gurs, mine are almost identical to yours.  I always say it feels like the worst hangover ever on top of the flu.

Mine always starts with a left-sided headache/teethache/faceache/earache/jawache.
I'm so washed out and useless, I can't move off the couch. Fatigue seems like too anemic a word for how limp and shaky I feel. Sleep doesn't help.
The pain moves down my neck to my shoulders making me feel like I'd love a session on "the rack" just to stretch things out and even out the tension. Weird, I know.
I feel nauseated, as though having a good "sick" will make me feel better.  And my stomach will burn with acid.  And I'll have cramps as though I'm getting an intestinal virus (sorry for the ugly visual, my friends!)
Sometimes my nose and sinuses will hurt. It feels like I'm breathing in frozen air, like I have my nose in a box filled with dry ice.
I get super-crabby and feel like everybody is out to make me feel worse and that nobody gives a rip about me. I cry alot and am so mean (Don't touch me! Bring me some water! Turn the TV off! Stop talking to me! Why is it so cold in here?) that I make myself completely unlovable, even to myself.
Oddly, the left side of my tongue will burn in a throbby sort of way, as though I've eaten a raw jalapeno but only on the left side. Not my whole mouth or my throat, but just the left side of my tongue.
One of the worst parts for me is that I fully believe that I'll never be well again. I lose all hope.

And then I start the Prednisone and, if I've started quickly enough, within 24 hours I'm back to my old self. Good health will last three to four weeks. And I believe I'll never be sick again.

One bizarre aspect of my flares is that I will forget that I should start taking the Prednisone. I don't understand why this is, unless it's because a flare will usually hit me in the middle of the night. I wake up feeling this way. So it's already too late.
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gurs

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Re: What are your flare symptoms?
« Reply #12 on: August 08, 2011, 12:44:39 PM »
I get that darn-left sided headache as well, then, it generally progresses to an all over headache...usually an aura migraine to kick-start the flare.
I always tell people I feel like ive been injected with some poision venom or something toxic. They dont get it. That really nothing is able to help it.



gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

eyeamdry

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Re: What are your flare symptoms?
« Reply #13 on: August 09, 2011, 12:33:30 AM »
Gursie, so sorry you are feeling so BAD!!! I'm not even sure I knew it was you when I posted my remarks.  Sometimes I look at the title of a thread and decide right then if I am going to post or not.  I don't necessarily read all the other posts before mine.  You must be so miserable and you are younger than most of us on here.  I guess age is not a factor though, except when you're older you may normally have less stamina to start with.

I hate to suggest this as I know you probably have tried it:  Lyrica?  Our doc told me about a year ago that I had fibro in addition to Sjogrens.  Well, I had been having stabbing pain in my left eye (and surrounding area) since Lasik surgery almost 12 years ago.  Nothing helped it.  Our doc Carol (heehee-she'll be mad at me)
to try Lyrica.  I said yes and within 3 or 4 weeks I noticed my left eye was not hurting nearly as bad as it had been for 9 years.  I also noticed some of my numbness was less--especially that around my lips, mouth and face.  It doesn't do much for other problems, but the pain in that eye is worth it.  It's way too expensive too, but that and Evoxac are my must haves.  ^The rest MTX, Plaquenil etc are relatively inexpensove. I do hope you're feeling better.  I go see Carol in a week or so.  Lucy

gurs

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Re: What are your flare symptoms?
« Reply #14 on: August 09, 2011, 06:36:03 AM »
Oh, Hi Lucy.....so many people with SS on the site just suffering horribly...it makes me cry. I really have to get my hormones fixed first
, if possible. Waiting to see this top endo later in september, hoping he can help me. Im so afraid to try anything, because I seem to be having immune reactions to everything i take. Its crazy!!!

I heard good things about Lyrica...so glad you found some relief with it. Im still not ruling it out. Hope your appt with doc Carol goes well..let me know ok.

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements