Spin the Sjogrens Symptom Wheel ....

[Gonzo]

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

[Jorja]

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!

[Still in the hunt]

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

[LizPetillo]

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 ... 

[Michael]

oh dang.....knee boobies today.....

[annken]

i had a cocktail of troubles, and fun and embarrassment!

[Still in the hunt]

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,,

[Narablueeyes]

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. 

[sunkissed64]

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?

[Narablueeyes]

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!! 

[KellyG999]

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

[artsyamerican]

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???

[artsyamerican]

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

[KellyG999]

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?

[Narablueeyes]

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.