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Sjogrens Topics => Living With Sjogren's => Topic started by: LizPetillo on October 18, 2011, 05:55:41 AM

Title: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo 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.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes 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???
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Joe S. 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.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 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!! :-\
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo 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
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes 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.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Skylar 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.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Madison Granny 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.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo 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
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: annken on October 18, 2011, 02:24:38 PM
i was SPINNING to day! :-\
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: meh07 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. 

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: SueAnn 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
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Michael 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!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: deeindiana 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
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Jozee 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!.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Meld256 on October 19, 2011, 03:55:33 AM
Liz,  this really is a good description.  :)

Michael, I'm so glad that you had a wonderful day to enjoy with your wife.  She sounds like a special lady and as Jozee said, kudos to you for mentioning how wonderful she is.

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 19, 2011, 04:33:45 AM
I've turned the wheel and today I'm just a bit tired (is the medication against my neuritis, and the pain is much less ;-)), a little pain in my joints and that's it. So it's a good day! And that's good because my daughter has vacation (school closes here for a week in the fall) so I think we will take a trip tomorrow to sea world.

Hope you all made a good turn on The Wheel today!
Stans
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 19, 2011, 04:42:47 AM
Can I undo my spin and try again?  This nausea is a bit overwhelming.  Been up all night with it.  Ginger ale can only do so much.  I WANT A RESPIN!   :o
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 19, 2011, 04:53:12 AM
Sorry to read that you spinned the nausea today! I wish we could respin when we wanted. But unfortunately... we can't. It's like Forrest Gump said: "Life is like a box of chocolates. You never know what you're gonna get."
Hang in there and hopefully tomorrow a better spin!
Stans
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: mshistory on October 19, 2011, 04:57:00 AM
What a great image! I think my wheel is stuck on fatigue right now - other symptoms come and go since starting Plaquenil but this fatigue hasn't budged  :(
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Bucky on October 19, 2011, 06:49:16 AM
I think this wheel should be like the game Farkle on Facebook . . . you get a bonus spin every 4 hours!   ;D

I agree, there should be prizes on this wheel too . . . and I don't mean SURPRISES!!   ;)

Talking about a spinning wheel . . . several years ago we DID have a real spinning wheel at school for staff appreciation week.  Everyone got to spin the wheel and you DID win prizes.  Most employees had already spun the wheel by the time I clocked into work at 9 a.m.  There weren't many prizes left to claim on the wheel by that time.  So, I spin the wheel . . . . then, I let out a loud yell (they could hear me down the hallway, so I'm told  ;) ) . . . I had won $250!!   ;D  I loved that wheel!!

I think this Sjogren's wheel would have spin stops along the way like:  take a nap, take your pills, get a back massage, sweater on, sweater off, skip today all together, take another nap, phone a friend, skip housework, call into work and tell the boss - "take this job and . . . . . ", go shopping, sing the Lazy song, etc.   ;D

Bucky
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 19, 2011, 08:58:15 AM
I think this wheel should be like the game Farkle on Facebook . . . you get a bonus spin every 4 hours!   ;D

I agree, there should be prizes on this wheel too . . . and I don't mean SURPRISES!!   ;)

Talking about a spinning wheel . . . several years ago we DID have a real spinning wheel at school for staff appreciation week.  Everyone got to spin the wheel and you DID win prizes.  Most employees had already spun the wheel by the time I clocked into work at 9 a.m.  There weren't many prizes left to claim on the wheel by that time.  So, I spin the wheel . . . . then, I let out a loud yell (they could hear me down the hallway, so I'm told  ;) ) . . . I had won $250!!   ;D  I loved that wheel!!

I think this Sjogren's wheel would have spin stops along the way like:  take a nap, take your pills, get a back massage, sweater on, sweater off, skip today all together, take another nap, phone a friend, skip housework, call into work and tell the boss - "take this job and . . . . . ", go shopping, sing the Lazy song, etc.   ;D

Bucky

I TOTALLY agree!!  I've already spun for a 3 hour nap.  Now all I need a maid spin and another nap spin.  It'll have to wait though.  Got my first opthahooziewhatsis (hahaha!!  My autocorrect picked up on my new word and saved it!!) appt in a couple of hours.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 19, 2011, 12:13:40 PM
Hmmm, wow.  I spun the wheel again.  A crazy, ignorant wench runs a stoplight and nearly t-bones me.  Let's call that one panic.  My optha dr tells me I'm at risk for glaucoma.  Let's call that one a little more panic.  On the bright side:  it's just a sty that won't heal, so let's call that relief.  One out of three ain't bad!!  My favorite daily saying:  it could be worse!!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: A66eyroad on October 19, 2011, 12:19:07 PM
Spun the wheel and the breeze has given me a sore throat...

Sure hope it's only a cold. I'm late with my flu shot this year.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on October 19, 2011, 12:41:00 PM
I spun today (why do I keep doing that?? :P) and got the allover pain that doesn't respond to pain meds. I need groceries but am too sore to go to the store...

Not looking forward to the end of my FMLA - TOMORROW is my last day.... sigh. Sure hope I don't "SPIN" out of control.

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Diane54 on October 19, 2011, 12:42:43 PM
I spun the wheel today and have another one of those "hangover like" headaches.............it's been like an everyday thing lately...could this be related to the barometric pressure? It's been raining here for days!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: annken on October 19, 2011, 12:48:14 PM
my wheel spun so hard today it flew off the spokes and flung itself in the harbour, thats the wheel not me....but with any luck the wheel will drown and leave me alone.
i think wheel spinning is very bad for the chains.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: susan on October 19, 2011, 12:53:07 PM

Very clever way of describing the frustration of changing symptoms! I guess it is not surprising that it is difficult for friends/family to "get it".
I feel less alone after reading everyone's posts!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Bucky on October 19, 2011, 02:17:26 PM
I spun the wheel today and have another one of those "hangover like" headaches.............it's been like an everyday thing lately...could this be related to the barometric pressure? It's been raining here for days!

Diane - yes, I think it definitely CAN bring on the headaches.   :(  Hope you feel better.

Bucky
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: soycoffee on October 19, 2011, 05:59:05 PM
Looks like your energy is losing out all the way around.  Is just after lunch and mine has left the building.

Two days ago, Monday, mine never showed up at all. Does "I just don't feel like doing anything today!" apply? It would, if I had had enough energy to sing it.

Then yesterday I was full of zip, *long* visit to ophthalmologist, back and forth with the pharmacy -- walking, mind you. 

Today was the run of the mill could-be-better, but I can move if I have to.

Sigh
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Meld256 on October 19, 2011, 07:11:00 PM
Bucky,

I love your "pitstop" ideas for prizes, not aches and pains.

Annken,
Maybe your mean wheel will leave you alone!

Nara,

Sounds like a productive (?) visit to the opthamologist.  So the "thing" is a stye; those can really hurt, but at least it's not a cancerous growth or anything that needs "scoopin' out" like a cyst. 

I used to get styes all the time-ugh...  and news that you are at risk for Glaucoma is not as bad as having it.  Hopefully, you have a good eye doc who will keep a "close eye" on it all.  (pun intended)   ;D
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 19, 2011, 08:36:31 PM
Nara,

Sounds like a productive (?) visit to the opthamologist.  So the "thing" is a stye; those can really hurt, but at least it's not a cancerous growth or anything that needs "scoopin' out" like a cyst. 

I used to get styes all the time-ugh...  and news that you are at risk for Glaucoma is not as bad as having it.  Hopefully, you have a good eye doc who will keep a "close eye" on it all.  (pun intended)   ;D

Oh he did offer to lance it wherein the "F" bomb was dropped freely and unsparingly.  Thank goodness he laughed.  I got antibiotic drops and samples of Restive (??). 

This dr is pretty good so far.  Asked a lot of questions, seemed knowledgeable about Sjogren's, and offered several avenues.  He seems to have a good eye for things.  (ba da dum dump!)
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 20, 2011, 03:32:14 AM
Today the wheel for me landed on RASHES and BREATHING. 
Double bonus prize.   :P

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 20, 2011, 08:06:26 AM
Today the wheel for me landed on RASHES and BREATHING. 
Double bonus prize.   :P

Barney!!  Tell us what Liz has won for the double bonus prize!!  Well, Marty, Liz has won a tube of cortisone that might or might not help her rash and she's also won a bottle of oxygen! 

I hope my humor doesn't offend anyone.  Liz I'm sorry you're feel' so pucky.  I hope your body settles down enough to let you breathe.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on October 20, 2011, 09:42:51 AM
Narablueeyes, if we can't laugh we might all lose it...

Can I ask you - does the Klonopin help you? Is it for anxiety?

KellyG
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 20, 2011, 09:48:02 AM
Narablueeyes, if we can't laugh we might all lose it...

Can I ask you - does the Klonopin help you? Is it for anxiety?

KellyG

That's what I'm afraid of, losing it.  So what the heck!!  LAUGH!!

I take Klonopin for the muscle relaxant feature.  I don't take it everyday but I've read that it can help with depression and anxiety
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: mshistory on October 20, 2011, 11:19:51 AM
Quote
Can I ask you - does the Klonopin help you? Is it for anxiety?


Hi Kelly,

I know this question was for Narablueeyes, but I'm also on Klonopin (clonazepam) and I do take it for anxiety. I take .5 mg twice daily and it helps tremendously. One of the benefits of Klonopin for anxiety is that it is fast effecting (but its effects also wear off sooner) - I recently tried to go down to once daily use and that lasted less than a week  :-\ I actually have an app't with my psychiatrist today ... I'm hoping he doesn't expect me to wean myself off of it because my anxiety just goes nuts (or maybe I do...?)  :o
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on October 20, 2011, 01:46:45 PM
 8) MS History,

Thanks for jumping in there with info on your experience with Klonopin. I have terrible anxiety resulting from the "attacks" I get from sjogrens. It feels like my throat is dry, swollen and suddenly I can't swallow. PANIC! I take a lorazepam when it gets bad, but it really doesn't seem to help very much. I am also on Zoloft which I don't think is helping at all...

KellyG
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 21, 2011, 07:07:43 AM
Spinning the wheel ... spinning .. spinning .. lands on TONGUE ULCERS. 
Tongue ulcers is the sjogrens prize of the day for me.  Full of 'em today.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 21, 2011, 07:28:49 AM
Spinning the wheel ... spinning .. spinning .. lands on TONGUE ULCERS. 
Tongue ulcers is the sjogrens prize of the day for me.  Full of 'em today.


OUCH!!  Is there ANYTHING to help with that kind of pain?
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 21, 2011, 07:37:45 AM
My spin landed on wide spread body pain followed by mouth and teeth pain after eating a blueberry muffin.  That's a weird one but one that I experience whenever I eat something with sugar in it.  Pop tarts ( I know, I know but it's the plain strawberry without icing) and now blueberry muffins.  My teeth ache like nobody's business and the inside of my mouth aches, sometimes to the back of my throat.  I stopes the pop tarts months ago but muffins???  REALLY???  Come on!!  At least my beignets haven't started bothering me...yet.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Still in the hunt on October 21, 2011, 02:45:59 PM
cold weather,, body wide pain that makes me want to cut my arms and legs off
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 22, 2011, 05:27:01 AM
Today the spin lands on 'tight chest' ...   :-\
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 22, 2011, 08:05:48 AM
I spinned muscle pain in my left leg but I didn't know it is on the wheel so I'm a bit worrying....
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 22, 2011, 08:14:25 AM
I spinned muscle pain in my left leg but I didn't know it is on the wheel so I'm a bit worrying....

I get pain in the back of my left leg right around the knee area.  I think mine is due to my tendons being to tight.  Might have something to do with my plantar fasciatis (sp??).  I have to do a lot of stretching. 
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 22, 2011, 08:20:35 AM
@Narablueeys Sounds painful! But it's not that. It's the muscle in my thigh and it feels a bit like I did too much exercise, but it feels differently, more painful...
Hope it will be gone tomorrow. Then my worries will gone too ;-)
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 22, 2011, 08:49:19 AM
@Narablueeys Sounds painful! But it's not that. It's the muscle in my thigh and it feels a bit like I did too much exercise, but it feels differently, more painful...
Hope it will be gone tomorrow. Then my worries will gone too ;-)

Ahhh...I haven't ever experienced that.  I hope it doesn't last much longer.  Will be something to bring up with your dr next visit.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Meld256 on October 22, 2011, 01:35:04 PM
My spin landed on "Painful joints" today.  Ok, that's every day but this is like a 7 out of 10 on my "crappy scale."   :P 

Really need to do some shopping with hubby today, but walking through the house is a chore.  Hmmm...wish me luck!  I'll be adding "epsom salts" to the list.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 22, 2011, 02:24:14 PM
I literally feel your pain, Meld.  Literally.  Shopping is THE ONE THING I hate the most.  Hubby has offered to do it for me.  Woohoo!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 22, 2011, 02:25:05 PM
We should switch Meld; here it's 23.22, I'm going to bed. Take care today, I hope you can manage the pain and do what you want to do today!
Stans
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Aquarius on October 22, 2011, 04:48:41 PM
For those who feel like the spinning wheel stops often on anxiety like me, I currently take a small amount of zyprexa and celexa.  Zyprexa as the psychistrist said helps with the following:  1) sleep, 2) stimulates appetite, and 3) helps with anxiety and depression.  He said not to be concerned that it is labeled an anti psychotic; what I needed to do is concentrate on how it helps the three things listed.   

Anyone who is overweight should definitely not take Zyprexa.  It is a god send for me since I have difficulty maintaining weight or even feeling like eating.  This ever since severe Sjogrens came on literally overnight and turned my entire life upside down and then  some.   
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Michael on October 22, 2011, 05:14:33 PM
Yipeee!! I spun a flair....guess I have to pay, to play...That is the suckey part.

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 23, 2011, 04:12:24 AM
Today I landed on numbly feet.  Considering everything it could land on ... I'll take it.  It's better than landing on choking or tight chest ... ya' know?

Geeeze .. what a 'life'!!     :o
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Meld256 on October 24, 2011, 02:35:22 AM
No shopping Saturday, but we drug ourselves out today for a short while.  I don't think I've ever had this extreme pain in my fingers, toes, knees, back, hips and elbows like this before.   I'd prefer it not to happen again for a long while!  Whew, ok, that's my vent...

 Nara, don't think I could get him to do the shopping all the time, although he is very good about asking on his way home from work if we need anything.  He will make a short pitstop.

Thank you, Stans. Very sweet of you to wish me a better day. It's getting there...I hope your Monday is good, too.  ;)
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 24, 2011, 04:37:47 AM
No shopping Saturday, but we drug ourselves out today for a short while.  I don't think I've ever had this extreme pain in my fingers, toes, knees, back, hips and elbows like this before.   I'd prefer it not to happen again for a long while!  Whew, ok, that's my vent...

 Nara, don't think I could get him to do the shopping all the time, although he is very good about asking on his way home from work if we need anything.  He will make a short pitstop.

Thank you, Stans. Very sweet of you to wish me a better day. It's getting there...I hope your Monday is good, too.  ;)

You know  that venting is a requirement on this board.  :-)

I'm not sure I'm ready to give it up to him completely.  I like trying new things, especially gluten free, organic, and Asian.  He is SO none of those things!!  He wouldn't even venture into those departments. 

I spun the wheel last night when I ate a cherry pop tart with icing.  MIGRAINE TRIGGER.  another day of missed work.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 24, 2011, 02:11:08 PM
@Meld Sorry to read you are having a lot of pain in so much joints! Hope it's better today!
My day was not too bad. Pain in my nerve is still there but manageable. But the painkillers make me foggy so I was a bit slow at work today. So I worked slowly today ;-) That's the Sjs wheel for me today.
Take care Meld, and all of you!
Stans
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Meld256 on October 25, 2011, 02:10:07 AM
Stans, Nara,

I'm much better today; yeah! Hope you both are doing better, too.  ;)

I know venting is a requirement...if you look back at older posts of mine, you'll see I've really done my share of it! I'm just managing pretty well right now.
Take care, all!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 25, 2011, 03:56:20 AM
Spinning Spinning Spinning ....
Today it lands on "muscle and joint pain flare up".

That's the main symptom today.
All the rest are still there of course.
But they take a back seat to the main one of the day.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on October 25, 2011, 05:00:00 AM
I spun the wheel really hard, hoping for something good. I landed on deep searing psin in both shoulder and the feeling of creepy, crawly things on my left leg. Super! At least my throat is semi-OK.

Have a great day, friends.

KellyG

Can someone please spin a calm, restful, pain free and really moist day for crying out loud!! ;D
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on October 25, 2011, 05:18:08 AM
I know Meld.  Just a little reassurance that I hear you.   :)

I spun the wheel this morning and all I got was a knot in my back and neck.  Go figger...
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Gonzo on October 25, 2011, 06:08:24 AM
Well Kelly, I spun a calm day. I'm just a bit tired but no more then usual just as the joint pains. So, I spun a good day ;-)
Hope it's your turn tomorrow spinningwheel friends!
Stans
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Jorja on October 26, 2011, 07:39:51 AM
What a great description of how I have been feeling for 8 yrs!!!  Never knowing what is coming next leaves me confused - never being able to definitely accept an invitation.  Today it's joint and muscle pain along with asthma.  Yesterday it was major back ache and esophageal spasms.  Everyday it's perpherial nerve pain and esophageal  problems.  Oh well, at least we are not boring people.
Thanks for the post.  It was as if you had direct access to my body!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Still in the hunt on October 26, 2011, 10:59:13 AM
My wheel spins wildy out of contro everyday,, hitting every symptoms along the way,,, i wsh it would stop on dry eyes and leave everything else blank,, be like hitting the lottery
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on October 26, 2011, 12:39:58 PM
Surprise afternoon spin .... landing on something new ... left side of the face and the lips are tingling and numbish ...

New ... dang sjogrens neuropathy is spreading ...  >:(
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Michael on October 27, 2011, 03:57:50 PM
oh dang.....knee boobies today..... :'(
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: annken on October 29, 2011, 03:45:24 PM
i had a cocktail 8) of troubles, and fun and embarrassment!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Still in the hunt on October 29, 2011, 04:27:57 PM
its ok Annken,, instead of hitting one place on the wheel,, you hit the lottery and won teh whole wheel,, dont feel bad, I got a house full of spinning wheels,, every one with different symptoms,,
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on November 27, 2011, 12:09:43 PM
I think my wheel is stuck!!  It's been stuck in "ain't no way you're gonna function properly" mode for over a month!!  I'm ordering a new wheel!!  And one with a garmin so I'll stop this getting lost mess. 
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: sunkissed64 on November 27, 2011, 12:16:23 PM
I get a bunch of symptoms from Sjogrens:
- achy joints, achy muscles, dry sandy eyes, dry mouth, dry skin, hair loss (chronic right now SIGH), tightness in my ribcage due to inflamed cartilage between my ribs, brain fog, no energy, depression, wheezing, salivary glands get stopped up.. today it's no energy, foggy head and 'omg i'm gonna need a wig at this rate' day. Anyone have chronic hair loss? If so how did you treat it and did your hair grow back?
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on November 27, 2011, 12:29:51 PM
I was online looking for wigs earlier.  Had an OMG moment with a few expletives thrown in.  I had no clue synthetic (good quality) were so expensive and real hair??!!??  Lets not EVEN go there!! 
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on November 27, 2011, 12:56:16 PM
I saw Jaclyn Smith on 'The Doctors' the other day. She has a line of good quality wigs (at least they claim to be) that are around $99. That is a fairly low price relative to what I have seen out there. They are designed by celebrity hairstylist Jose Eber. Maybe they are worth checking into...

I had a lot of hair loss last year, thank goodness I started with a thick head of hair. It is finally filling in at this point. I don't know what I did, but it seems eating well, taking suppplements and drinking a certain protein drink every day are helping. I was so sick a while back I couldn't eat. so nutrition was kind of a problem.

Good luck!
KellyG
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: artsyamerican on November 27, 2011, 12:59:44 PM
I love your description...everyday is different and unpredictable.  Yesterday was horrrrrriiiible...with feeling like I was not even part of my own body - very surreal - and then the headache - and then the nausea.  I place a lot of the blame on sulfasalazine!! I ABHOR the way it makes me feel.  Today I haven't taken any....but am in excruciating pain....sadly....this is better....because at least I feel like me! Oh brother!

BTW - my hair is thinning a bunch also~ I thought it was from menopause - is this a symptom of sjogren's also???


Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: artsyamerican on November 27, 2011, 01:02:34 PM
I saw Jaclyn Smith on 'The Doctors' the other day. She has a line of good quality wigs (at least they claim to be) that are around $99. That is a fairly low price relative to what I have seen out there. They are designed by celebrity hairstylist Jose Eber. Maybe they are worth checking into...

I had a lot of hair loss last year, thank goodness I started with a thick head of hair. It is finally filling in at this point. I don't know what I did, but it seems eating well, taking suppplements and drinking a certain protein drink every day are helping. I was so sick a while back I couldn't eat. so nutrition was kind of a problem.

Good luck!
KellyG


Kelly -
I am curious - your bio mentions tumors on your spine - are they Tarlov cysts? Just wondering...that is what I have.  Three large Tarlov Cysts on my sacrum....just thrown in for a little added pain! LOL
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: KellyG999 on November 27, 2011, 02:16:21 PM
Hi Amy - I have nerve sheath tumors, also called Schwannomas. Yes, nothing like something ELSE that causes pain...

What is the plan for your tumors? Watch and wait, like mine?
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on November 27, 2011, 03:23:02 PM
I saw Jaclyn Smith on 'The Doctors' the other day. She has a line of good quality wigs (at least they claim to be) that are around $99. That is a fairly low price relative to what I have seen out there. They are designed by celebrity hairstylist Jose Eber. Maybe they are worth checking into...

I had a lot of hair loss last year, thank goodness I started with a thick head of hair. It is finally filling in at this point. I don't know what I did, but it seems eating well, taking suppplements and drinking a certain protein drink every day are helping. I was so sick a while back I couldn't eat. so nutrition was kind of a problem.

Good luck!
KellyG

I'll check them out.  I'm not at the wig stage YET, but at this rate, it won't be long.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: artsyamerican on November 27, 2011, 04:12:24 PM
Hi Amy - I have nerve sheath tumors, also called Schwannomas. Yes, nothing like something ELSE that causes pain...

What is the plan for your tumors? Watch and wait, like mine?

Basically yes! There are only a handful of neurosurgeons that will even touch a Tarlov Cyst - as they are filled with spinal fluid and can be tricky business!! So...I've learned to just deal with it! Ugh.

Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: LizPetillo on November 28, 2011, 03:49:33 AM
Today .... tongue ulcers.  And those big ol' cracks in my tongue seem deeper.
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Duchess on November 28, 2011, 07:06:03 AM
Well, I spun the wheel and right now I Feel Good!!!

I am going for a walk, YEAHHHH!!!!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on November 28, 2011, 07:15:27 AM
Well, I spun the wheel and right now I Feel Good!!!

I am going for a walk, YEAHHHH!!!!

YAY!!!  I'm glad someone's feelin' it!!
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: soycoffee on November 28, 2011, 10:03:15 PM
I get a bunch of symptoms from Sjogrens:
- achy joints, achy muscles, dry sandy eyes, dry mouth, dry skin, hair loss (chronic right now SIGH), tightness in my ribcage due to inflamed cartilage between my ribs, brain fog, no energy, depression, wheezing, salivary glands get stopped up.. today it's no energy, foggy head and 'omg i'm gonna need a wig at this rate' day. Anyone have chronic hair loss? If so how did you treat it and did your hair grow back?

I did have moderate to severe loss about two years ago. My hair is now thick, though my scalp is dry and itchy. Two things probably helped:
(1) My doctor prescribed Ketoconazole shampoo, where you start out shampooing with it every day, for four days, then every other day.
(2) At that time and continuing to the present I have been taking Jarrow Methyl b12 Sublingual tablets, building up to high quantities. The Methyl b12 has modified many of my autoimmune problems, and reduced CIDP immensely, so that I no longer need IVIG. Not all my skin issues are gone, by any means, but the hair loss has stopped, and I have a full head of hair. If you order from iHerb, using the coupon code  SIG531 gets you $5 off on the Methyl b12. iHerb does ship all over the world, with an excellent record.

Good luck with your diminishing hair,
Soycoffee
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Narablueeyes on November 29, 2011, 06:03:50 AM
Little sleep last night and when I got up this morning, literally felt like gloom and doom.  Oh, I HATE this!!  The Saints pounded New York and I was cheering the team on and feeling pretty good and Pentatonix won The Sing Off last night and I've predicted them from day one.  I was feelin' SSOOOO good last night and now this!!  This is been happening about once a month now for the past year.  Hormones???
Title: Re: Spin the Sjogrens Symptom Wheel ....
Post by: Duchess on December 06, 2011, 09:31:22 PM
Wasn't that cool to have Afro-Blue singing with Smokey Robinson? That is my favorite singer.

Pentatonix is outstanding.


Duchess