Author Topic: Spin the Sjogrens Symptom Wheel ....  (Read 14918 times)

LizPetillo

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Spin the Sjogrens Symptom Wheel ....
« on: October 18, 2011, 05:55:41 AM »
Picture the Price is Right with that big wheel going around and around ....

Seems every day I spin the 'Sjogrens Symptom Wheel' ...
What will be the 'stand out' symptom of the day?
There is always one that seems to take the lead over the others.

Today I landed on 'hard to breathe'.

Does that seem to happen to anyone else?
You have the symptoms but each day one seems more than the others?

Haven't decided which is the worst.
It seems to me I change my mind each day ... depending on
which symptom the sjogrens symptom wheel lands on.

Narablueeyes

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #1 on: October 18, 2011, 06:13:51 AM »
Picture the Price is Right with that big wheel going around and around ....

Seems every day I spin the 'Sjogrens Symptom Wheel' ...
What will be the 'stand out' symptom of the day?
There is always one that seems to take the lead over the others.

Today I landed on 'hard to breathe'.

Does that seem to happen to anyone else?
You have the symptoms but each day one seems more than the others?

Haven't decided which is the worst.
It seems to me I change my mind each day ... depending on
which symptom the sjogrens symptom wheel lands on.

Mine are pretty consistent at this point, although lemme tell ya the dang fire drill they had at work this morning blew my normally low blood pressure out the roof!!!

I can count on fatigue, sometimes manageable, other times overwhelming.
I can count on a headache although I'm pretty sure it's going into migraine mode this morning.
I can count on some nausea but I have found that if an ice cold Capri Sun doesn't help, I can always rely on my trusty Zofran.
And the ALWAYS constant pain.  The upper back (from my injury) to my legs -thighs to feet. 

Did I land on the $1.00???

Joe S.

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #2 on: October 18, 2011, 06:40:15 AM »
The challenge is that the symptoms change through our the day. They are intermittent. I know from my time in electronic repair the intermittent symptoms are the hardest to track down and repair. You really have to know your functional block diagrams and feed back loops to fix the problems.

With a fibromyalgia group we traced the wheel of symptoms back to the Krebs Cycle.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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KellyG999

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #3 on: October 18, 2011, 08:27:13 AM »
Hi Liz,

I don't know if it's helpful to you, but I "spin the wheel" most days too. Some are obviously worse than others. I get short of breath sometimes, too. My lungs are actually in tip-top shape, I am not overweight, but yet I get winded going up stairs a lot.

I find it hard to locate a rhyme or reason to the various symptoms, but it seems to be the throat swelling, mouth pain and back/body pain and fatigue that hinder me the most.

Good luck, feel better!! :-\

LizPetillo

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #4 on: October 18, 2011, 10:09:39 AM »
Spun the wheel again ... Now my throat feels swollen and I'm extra dry.
The short of breath - tight chest - is lessened.
It's strange ... like I've got a set amount of 'sick energy' and the symptoms
are fighting over the energy to see who can be the strongest.

I can picture it ... shoulda' been a writer of fantasy novels or something.   ;D

Narablueeyes

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #5 on: October 18, 2011, 10:14:53 AM »
Spun the wheel again ... Now my throat feels swollen and I'm extra dry.
The short of breath - tight chest - is lessened.
It's strange ... like I've got a set amount of 'sick energy' and the symptoms
are fighting over the energy to see who can be the strongest.

I can picture it ... shoulda' been a writer of fantasy novels or something.   ;D

Looks like your energy is losing out all the way around.  Is just after lunch and mine has left the building.

Skylar

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #6 on: October 18, 2011, 11:40:05 AM »
Spin the Sjogrens Symptom Wheel LOL - that's a good name for it. I usually refer to it as a roller coaster ride through the fun house at the amusement park. Frankly, on most days that's what annoys me most about Sjogrens - you never know from hour to hour what's going to happen next. With many chronic diseases you have somewhat of a consist pattern of what you have to deal with day in and day out so you can be prepared - not Sjogrens.

Madison Granny

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #7 on: October 18, 2011, 01:31:29 PM »
With SJS I think it's like a box of Cracker Jacks.  You never know what your PRIZE?? will be today.  Some days fatigue, some days aching joint, some days extremely dry everything and then some days all of the above and more.  This disease is one disease is one unfair disease.
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

Gonzo

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #8 on: October 18, 2011, 01:42:02 PM »
Brilliant Liz! In one word what is Sjs, what brings the wheel of Sjs today. It's exactly how it goes for me! I'll think I will never forget your 'wheel' and it's not fun, but it makes me smile. Curious what the wheel brings me tomorrow ;-)
Here it is 22.40, bedtime. And give the wheel a turn ;-)
Take care you all,
Stans

annken

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #9 on: October 18, 2011, 02:24:38 PM »
i was SPINNING to day! :-\

meh07

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #10 on: October 18, 2011, 02:53:21 PM »
This is an absolutely great description.  What I think is hard for most people to understand is that we have no idea what's going to be wrong next.  Will it be fatigue, will it be aching legs, will it be muscle spasms, swollen parotids, dry eyes, etc.  I think if we had consistent every day symptoms in one(maybe two)areas it would at least seem like there really was something physically wrong. 

You just don't know and you can't always predict what's going to be wrong today, tomorrow or the next day. 


SueAnn

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #11 on: October 18, 2011, 04:09:52 PM »
Great description Liz,  I have been spinning everyday since Friday. 

Friday = great day
Saturday = fatique & sick feeling all day
Sunday = pain, but felt ok
Monday = so much pain that I had tears rolling down my cheeks
Today = some pain, but feeling better
tomorrow = spin the wheel again.


SueAnn
Sjs
LDN, Plaquenil, Evoxac, Prednisone, Restasis..
Vit B complex, calcium, Vit D
Female - 50ish

Michael

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #12 on: October 18, 2011, 04:36:09 PM »
LOL...spinning the wheel is a good one!
Guess I spun a "vertical day"...and it is one I won't forget.

My wife told me that it was a beautiful day, and the leaves are in full color. She said if she put the boat on the back of the truck and packed a lunch and a ton of blankets would I feel like going out on the lake..I said lets do it.
 The lake was like a sheet of glass with not even a slight ripple..the sun was low and not very strong but warm. We were the only boat on the lake. I got to fish for a little..but no luck!

What a great day!.......there is very few of them

I sure do love my wife!

deeindiana

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #13 on: October 18, 2011, 05:07:47 PM »
You aren't alone. Vanna White spins the Wheel of SjS for me all the time.
Deb
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 62
Difficulty swallowing, fibromyalgia, burning mouth, GERD, anxiety, dry, dry, dry!
Medications: Atenolol, Dexilant, Plaquenil
I am my own worst enemy...

Jozee

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Re: Spin the Sjogrens Symptom Wheel ....
« Reply #14 on: October 18, 2011, 10:32:11 PM »
What a perfect description! Thank you! I hope you don't mind it if I use it too.

Michael - Sounds like a wonderful wife and you too are wonderful for seeing how much she loves you too!.