Author Topic: My top 5 least favorite SJ symptoms  (Read 22457 times)

momomom

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My top 5 least favorite SJ symptoms
« on: February 22, 2010, 07:40:05 AM »
These are my favs for the day. I could have done a top ten considering there are so many other symptoms that are right up there with these but I thought I would try to narrow it down. I can always edit later depending on symptoms.


1. Brain fog- Losing count four times while counting change at the store, forgetting where I am while driving just long enough to scare me, having someone speak to me and then immediately forgetting everything they just said. Having to write EVERYTHING down and then forgetting to read what I wrote (even the many notes I write on my hands and arms).

2. Dry/red/swollen eyes- "Dry" being an understatement. So dry that my eyelids stick in place while I sleep often to the shape of my pillow, so dry and red that I squint constantly which has actually prompted many people to ask me if I am high! So swollen that my eyelashes now bend downward!

3. Exhaustion- Sleepiness that comes on at the worst moments like while I am driving, or in college in the middle of finals, or ten minutes before I have to be out at the bus stop waiting for the kids. Fighting sleep all day to the point when it is finally bedtime I CAN'T sleep.

4. Dry skin- Coating myself with hundreds of dollars worth of oils, creams, lotions, and preparations. My bathroom looks like the cosmetic isle in a department store. Trying to shave my legs requires careful planning of moisturizers, soaking time, and expensive razors, or razor burn is inevitable.

5. Nosebleeds- That come on out of nowhere and gush like geysers. The worst is when I am out in public, wipe my face and discover that my nose is bleeding again and then I wonder how long I have had blood on my face and if anyone noticed. This morning my nose actually bled down into my mouth! EWWWWWW! It was so disgusting. Once I walked through my kitchen and noticed a trail of blood. I followed it for a while before I realized the trail was following me. Then of course it dawned on me that my nose was bleeding again.

navydad

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Re: My top 5 least favorite SJ symptoms
« Reply #1 on: February 22, 2010, 09:05:56 AM »
Mine
The Neuropathy,, its getting worse
The dry sinuses,,, and only some kind of goo that I get out of them,,
Trouble swallowing,
Oh,, theres so many I cant think right now,,, Brain fog,,

Bernice

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Re: My top 5 least favorite SJ symptoms
« Reply #2 on: February 22, 2010, 09:17:54 AM »
I can sum mine up to
full body pains , from cheeks to toes
brain fog
exhaustion

Scottietottie

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Re: My top 5 least favorite SJ symptoms
« Reply #3 on: February 22, 2010, 10:03:41 AM »
1. Stinging eyes

2. Brain fog

3. Having to unstick my tongue from the roof of my mouth with a finger when I wake up

4. Sore joints

5. IBS
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Claire the Red

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Re: My top 5 least favorite SJ symptoms
« Reply #4 on: February 22, 2010, 10:41:33 AM »
1. Brain fog (I think I used to be much sharper... but I can't quite remember!)
2. Constipation (thank goodness for Miralax, but sometimes even that does not solve it)
3. Dry nose/sinuses, which is just so uncomfortable and hard for me to treat! Also get nosebleeds, but nothing like Momomom (poor thing! Yikes!)
4. Dry cracking skin on my hands. Every time I bump into something, it breaks the skin and I wind up covered in Band-Aids. Going through lotion at an alarming pace these days. Fingers crossed for an early Spring.
5. Always chilly, frozen hands & feet.

Also, my eyes are very dry. Last week I "failed" my latest Schirmer's test. The technician who administered it was clearly surprised and had to ask her colleague how to grade my results, because it was basically a zero. However, the eye docs are pretty aggressive in treating me for this, and now that my punctal plugs are in again, I am feeling more comfortable.
 

ohiolady

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Re: My top 5 least favorite SJ symptoms
« Reply #5 on: February 22, 2010, 11:24:03 AM »
1.    Totally messed up digestive tract.

2.    Dry Eyes

3.    Very dry mouth

4.    Brain Fog

5.    Fatigue

 
Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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sugarbugar

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Re: My top 5 least favorite SJ symptoms
« Reply #6 on: February 22, 2010, 11:34:23 AM »
My top 5 would be:
1. Neuropathy! I hate it, can't stand the numbness and loss of function of limbs.
2. Body aches that feel like you have the flu x's 10!
3. Feeling my lungs stick from thick mucus and making it difficult to breathe.
4. Constant sores in my nose and mouth ( sorry about your nosebleeds momom!)
5. Dealing with ignorant people who tell me what I'm going through is not so bad that I can't do things at times. My biggest pet peeve is people who don't think I'm sick because I don't look it.

Katybarstool

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Re: My top 5 least favorite SJ symptoms
« Reply #7 on: February 22, 2010, 12:48:22 PM »
This certainly got me thinking. At the moment (I think) my worst problems are

Bladder problems

Bowel problems

Stuffy sinuses

Joint pains

Lung problems

Oh, and one more - the rheumie who thinks this is just 'bad luck'

Kathyx

ohiolady

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Re: My top 5 least favorite SJ symptoms
« Reply #8 on: February 22, 2010, 12:57:40 PM »
Okay, Sugarbugar and Kathyx, you reminded me of what #6 would be.  People who say we look great and act like we are great because they think we look great.  There, I got that out of my system.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

beverley

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Re: My top 5 least favorite SJ symptoms
« Reply #9 on: February 22, 2010, 01:07:56 PM »
Wasn't sure I could limit it to five but here goes.

1.  Fatigue and unable to sleep.

2.  Aching joints from neck down.

3.  Did I mention fatigue?

4.  Dry, sore eyes.

5   Oh and fatigue!

6.  Brain fog.

7.  IBS and bladder problems.

8.  Heart beat in ears and tinnitus.

9.  Dry sinuses.

10. Dry mouth and lips.

11. Oh yeah - and fatigue - perhaps I said that already.

Beverley

Dolly Dimples

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Re: My top 5 least favorite SJ symptoms
« Reply #10 on: February 22, 2010, 02:13:50 PM »
 May as well add mine,

   1 Not being able to go to the shops, cafes, public places, etc', because of this modern day Air conditioning.

    2.Not being able to travel on public transport, by car etc' because of the air, windows, grills, etc' blinding me!

    3.Not being able to eat , chew or sometimes swallow some of my favourite foods,  due to sensitive gums and tongue due to dryness,

    4 Not being able to wear the clothes that I would like to wear due to this broken down thermostat of mine.

     5. Not being able to sit comfortably, due to the dryness and broken skin of my  genital region.

     6 Not being able to accept invites out, due to worrying that I will be ok to go.

     7 Not being able to live like I used to, years ago!

      There's more , but it will keep.   Dolly.
 

louise

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Re: My top 5 least favorite SJ symptoms
« Reply #11 on: February 22, 2010, 03:57:33 PM »
1 swollen painful glands.
2 dry mouth .
3painful joints.
4 digestive problems.
5 dry eyes.
                     

         
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Johnson

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Re: My top 5 least favorite SJ symptoms
« Reply #12 on: February 22, 2010, 04:02:47 PM »
1) Fatigue
2) Fatigue
3) Fatigue
4) Brain Fog
5) Fatigue

The other one's are no fun, but one just stands in the way of me enjoying my life the way I want to.

sugarbugar

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Re: My top 5 least favorite SJ symptoms
« Reply #13 on: February 22, 2010, 05:48:35 PM »
Johnson I hear you! The fatigue can stop me dead in my tracks!!

Patze

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Re: My top 5 least favorite SJ symptoms
« Reply #14 on: February 22, 2010, 06:20:34 PM »
Let's see....

1. Brain fog, brain fog, brain fog, brain fog, did I mention brain fog?
2. Fatigue
3. dry eyes
4. muscle pain
5. bowl issues
6. neuropathy
7. raynaud's
8. sinus problems

And a partridge in a pear tree.............


Patze

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