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Sjogrens Topics => Living With Sjogren's => Topic started by: flutterfly on December 01, 2010, 04:26:29 AM

Title: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 01, 2010, 04:26:29 AM
 :o SOOOOO...i think its sorta ironic that now for the last year i've been havin' these odd wierd sensations like water truly runnin down my legs!
but as u prob. guessed there's no frickin' h2o! (no piddle either) just the sensation! i tell my diabetic doc & he says that he doesn;t think its due ta my diabetes!
than what IS IT? um i dunno was all i got out him! thanx doc...here's sum more $!

i also do have neuropathies in hands & feet...BUT THIS IS WAY DIFFERENT! i also get these wierd firey waves like all of a sudden my foots on fire!

any 1 else w/weirdies?

thanx ~*flutterfly*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Scottietottie on December 01, 2010, 06:12:29 AM
Hi Flutterfly  :)

I saw my neurologist last week on an annual visit and told him "Well - my skin is still lying to me!"

I haven't had the 'water down the legs' but I have had 'my shoes are full of cold water' (when they are NOT)

I get burning patches of skin that I could pretty well draw lines round but they come and go. My feet usually burn now rather than feeling wet. I'm not diabetic.

I think its a type of neuropathy that goes along with Sjogren's but I'm not medical - its just my opinion.

Take care - Scottie  :)
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Joe S. on December 01, 2010, 08:13:50 AM
For years I have had spots that feel "wet" when they are not. To me they are just weird feelings. As Scottie says, "my skin is lying to me". I have put it off as part of RLS or Neuropathy.
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: deeindiana on December 01, 2010, 09:12:03 AM
Wow...I've been recently having the same feeling. I'm going to keep tabs on your post to see if anyone comes up with a good answer. Thanks for asking it.
Deb
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Shani on December 01, 2010, 09:24:29 AM
I'm not quite sure either.
But it could be Neuropathy related still.
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 01, 2010, 10:59:38 PM
such a long fustratin` day @ hospital 4 our papa ALL DAY...
BACK AGAIN tamorrow...so i will bidcha a good night folks &
i will hope 4 the pillows ta be cold on BOTH SIDES 4 ALL!

much luv commin`atcha!

~*flutterfly takin` fieldtrip ta dreamland hopefully!*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Daisy1234 on December 02, 2010, 02:54:43 PM
I am thinking that perhaps what you are describing may be a type of Paresthesia.  My neurologist explained it as a sensorial neuro disturbance in the nerve endings being out of whack that may give us sensations that are not actually happening.

There are several causes for this issue some of which are:

Alcoholism
Atherosclerosis
Autoimmune disorders
Fibromyalgia (FMS)
Guillain-Barre Syndrome (GBS)
Herpes zoster (shingles)
Hyperventilation
Hypoglycemia (low blood sugar)
Lyme disease infection
Menopause
Metabolic disorders (diabetes, hypothyroidism, hypoparathyroidism, etc.)
Multiple sclerosis (MS)
Nerve irritation
Neuropathy
Vitamin B deficiency (specifically, B5 and B12)
Whiplash

I don't know if this will help anyone but I would suggest talking to your neurologist about this problem to see if there is a remedy available for you.

Hugs, Daisy
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Catilee2 on December 02, 2010, 03:20:30 PM
hi,
my old neurologist  said these weird sensations could be part of the neuropathy as everyone's experience while somewhat similar is also individual.
I'm glad to read someone else has experience the water running down the leg sensation.

Catilee 2
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Prairie Gal on December 02, 2010, 04:52:51 PM
It doesn't happen anymore, but a couple of months before I got the SjS Dx, I had what felt like something taking tiny bites up and down my legs.  The rheumy said it was PN.   I get some tingling in my feet at times now but the nipping hasn't come back, so I think Plaquenil "nipped" it in the bud.

I was lucky to be Dx'd just 7 weeks after my first dr's appt - the "nipping" was the reason I made the appt.  It was my first major symptom.    Then the super-dry mouth kicked in.    I'd had dry eyes for 11 years before all this happened.  The eye doc at that point said it was "quite common for women my age", but I think now it was the first sign of SjS.
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Scottietottie on December 02, 2010, 05:29:06 PM
Hi  :)

My skin started telling me lies in my early thirties - way before menopause and too financially challenged with young children to be an alcoholic. MS was tested for - as a possibility and was discounted.

I was therefore deemed to be a hypochondriac.

This was way before any dryness started. It felt real however. Good news - my skin still lies to me but it hasn't got a whole lot worse than it was then.

Take care - Scottie  :)
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: eyeamdry on December 02, 2010, 05:57:33 PM
I believe this is just part of FUJS.  I get the feeling of cold water being poured down my back.  I also get the feelings in my arms an legs.
My face gets numb too.  Lyrica does help me with this somewhat.  Lucy
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 03, 2010, 02:38:42 PM
WELL HELLO THERE MY FUNK SENSATION~SKIN LYIN' TA THEM PEEPS!

GOTTA MAKE THIS QUICK...HUBBY NEEDS TA DO QUICKBOOKS & IS HO~HUMMIN' 'BOUT ME GETTIN' OFF!

k...so what's parathesia~PN~ & FUJS?(last 1 sounds naughty) HUH...HUH...HUH?

PRAIRIE GAL~ is the sensation of ~bitin'~ sorta like creepy crawlies that are worse when ur standin'still & feels like maybe bugs under skin & restless leg syndrome WITH SHOCKS all rolled inta 1? like maybe if u move 'em it'll get better...BUT DOESN'T...JUST DRIVES ME BATS%*T CRAZY!
thats the best i can explain it (but not really...hard ta put inta words!)
if not...couldcha explain the nippin/'bitin' please!

okay gotta give up my laptop...check in later! thanx guys! i don't feel like i'm hallucinatin' or a hypochondriac as much now!

U GUYS ARE REAL RIGHT? UR NOT A FIGMENT OF MY IMAGINATION ARE YA? please be real...please be real... ::)

~*FLUTTERFLY*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Prairie Gal on December 03, 2010, 03:20:35 PM
Flutterfly, it really just felt like something small nipping me up and down my legs. There was no electric shocky feeling and it didn't matter if I moved around or not; it came and went as it pleased, though seemed a bit worse if I sat still for long periods.
I get "jumpy" legs at times in the middle of the night in bed if I've gotten up to go to the bathroom.  Since this apparently isn't what usually happens with "restless legs", I don't know what to call it.

   Until you mentioned it just now, I'd forgotten I do get the sensation at times that there's a little bug walking around on my arm -- but there's nothing there when I look.   It goes away in a few minutes.  I also used to get the "pins and needles" feeling regularly at the tip of my nose.   That hasn't happened in 3-4 years now.

I figure as long as this stuff doesn't stick around too long and doesn't drive me batty, I won't worry.
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Joe S. on December 03, 2010, 04:28:15 PM
Flutterfly, I have often considered if I am a figment of my own imagination. But then where does my imagination exist if I am a figment of it?
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 03, 2010, 05:20:34 PM
JOEY~ GOOD POINT SWEETNESS! TEHEHE! ;D

PRAIRIE GAL~(what prarie? my friend calls me 1/2 pint...so i think of lil' house when i see ur name!) thanx 4 the explanation!!!
yupper i get the crawlies...like a hair or an ant travelin'down the same lil' part of my body (1 ta 6 inches usualy) just drives me nuts so i keep tryin' ta wipe it away ta no evail!
but my leg thingys r more like there's sumthin' crawlin on the INSIDE! (if i rub them & sit down it helps) but its weird it seriously is just from my knees down ta my toes on that sensation! i gotta say its even more maddenin' then the neuropothies!

& the water floodin under the surface & warm sensations r just funky funk funk thingys but not bothersome @ all...no pain or nothin' just the feelin'!

thanx again!

MODS...WHAT HAPPENED TA ME? WAS I REALLY A FIGMENT? I JUST KNEW IT! (SHA HELP ME!!! BRING ME BACK TA THE SJOGRENS WORLD PERTY PLEASE!!!)
~*LOST A WHOLE FLUTTERFLY*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: navydad on December 04, 2010, 10:26:30 AM
 How did I miss this thread,, I started out exactly like that,, I would be standing there,, next thing I kow I;m grabbing my leg,, I swore there was water running down it,, then the weird stuff,, feet on fire,, more water runnng down the other leg,, EMG studies,, theres nothing wrong with you,, ok,, why dont my feet work,, more emgs,, nothing worng,, I could go on,, but if you havent been checked for SMALL FIBER NEUROPATHY,, get it done,, its alot easier then having them shoot your nerves full of electricity
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Cinnamon Girl on December 04, 2010, 04:32:20 PM
I have had this sensation a few times...thought I was going crazy...
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Scottietottie on December 04, 2010, 05:36:33 PM
Nah - your skin is just telling you lies!  :)
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 04, 2010, 09:56:07 PM
NAVY DAD~ DIDCHA THINK U WERE WETTIN' URSELF THE 1ST TIME?

i did! the thought of how it got from my whoo~who ta the mid~inside thigh w/out me feelin' it til it was down there WASN'T even a thought! i just KNEW i piddled! thats how REALit felt!

then didn't happen @ all 4 awhile & then b4 i knew it it was happenin' more & more in random places in legs & then in my arms & a few days ago in my face!
(already have trig on left side of face & weird random numb spots all over my face & tongue! like i was a couple hrs from dentist visit!)

TEHEHE!!! MY FRIEND HAD THE NERVE ELECTRICITY SHOTS!!! HE ALSO FARTED ALMOST EVERY TIME THEY SHOCKED HIM! even had the doc bettin' if this would be a ~silent~ or ~crack reverb~! was halarious cause the said friend was a big bad biker! snicker snicker...OH I THINK I SNORTED!!!

~*FLUTTERFLY NEEDED THAT LAUGH*~ XO
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 12, 2010, 12:19:19 AM
anybody else? please chime in! done w/ caps...unless ta pop 1 or 2 words!  ;)

just wanted thoughts 'bout this subject b4 i go ta virginia mason please! it happens ALL the time now! & also the warmth floodin' inta feet like they have a warm fire just lingerin'! so weird cause i'm describin' 2 totatly different things but could happen back ta back also! welcome ta my wacky weirdness!

thanx whole bunches!

~*flutterfly*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: Sha on December 12, 2010, 10:29:11 AM
Hey bebe~

Ok, I was doing some research for you guys and this site describes the sensations really good but I didn't see that they gave it a name...the descriptions of the feeling will make you guys snicker though;)

http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/multiple-sclerosis-is-getting-under-my-skin-a-new-sensory-symptom/

Flutterfly~ I will admit this one was harder to research....been at it for a couple of hours and this page explains it the best;)

http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night?hp_id=378

Hope this helps someone!

Sha
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on December 12, 2010, 12:39:01 PM
SHA BEBE~ i appreciate u so much dearheart! i don't know why i hadn't had u look this stuff up b4 this! (feel like a dummy) but yeh i always say stuff well similar ta what was said on the links u just posted!

like i call 'em ~snowday hands~ when i drop things 'cause i thought i had ahold of it! i say man water's tricklin' down a random spot on me!
or yay my feet don't know their touchin' the floor! i get the random numb chin...the always tingly cheek that has a zap inta my skull or this 1's grand...
the feelin like u came from the dentist & the nummin' is ~just~ startin' ta go away but not really!

man when i posted ta this last night my always numb feet (i'm used ta my feet bein' numb & not feelin' touch & not bein' able ta tell hot & cold difference! but they were extra tingly & full of warmth & i was gettin h2o trickles down my arms & thighs (i call it the ~pee factor~) but i dunno how the pee trickle end up in my arms! tehehe! not painful unless it's accompanied by the horrid 3 ta 40 second zaps! those lil' buggers STING! even tho they're short lived it gets a pixies attention pronto!  :o

the itchy/scratchy effect drives me crazy~er! get done itchin' 1 spot & b4 i get done...another 1 pops up! made 4 futile attempt @ sleepytime!
plus that link said it best...itchin' the tingly numb spots do absolutely NO good! (but i still try)!

as much as i felt validated that others explain the same feelin's that i have...(it is REAL...daggumnit!)...i'm sorta flustered!
now tryin' ta stop the water works from my eyes!  :'(

i just get so dang mad that my docs didn't know this & wouldn't catch on that THAT was what i was describin'! ya know!?!

~*flutterfly wonderin if docs need ta go back ta school!*~
Title: Re: RUNNIN' H2O SENSATIONS DOWN LEGS! NO I DIDN'T PIDDLE!
Post by: flutterfly on January 25, 2011, 01:28:41 PM
                                                                                 ;D   ~^UPDATE^~   ;D

K...so this is what i found out...i have SEVERE carpal tunnel in both hands that need surgery ta stop more damage!!!

i have polyneuropathies in both hands & both feeters & no reflexes in ankels...risk 4 drop^foot & allready have sum of those signs!!!
(1st bein' NO REFLEXES in ankels!)

i have a pinched nerve in elbow (tennis elbow i think) & a frozen shoulder syndrome! they call it impingement syndrome of the shoulder!!!
i just got x~ray of that & will find out more later!!!

i got mri of my noggin & it show change ta the white matter inside there!!! doc asked if i get severe migraines or have had head trauma!!!

i say well...no headaches but i was beat by ex/a$$^hat on a daily basis!!!16 years ago
(broke up w/him when i smarted up & took a break from duders completely up 'til i found this hubbs that is!!!)
& her response was...YUP...THAT COULD DO IT!!!   >:(

oh & all those wooky h2o sensations & creepy/crawlies & such...he says thats a very common description!!!
also peeps say they feel like they're walkin' on rocks!!!
oh & i have myopathies & tendonapathies that i have ta have muskel doc 4 but i will be puttin' that off as well 4 the time bein' @ least!!!

all this stuff i've been complainin' 'bout 4 a decade & up 'til i went postal pixie on their tushes...
i had NO ANSWERS & NO1 cared!!! BUT now oh boy is every1 scamperin' usin' words like ASAP & u NEED ta & blah blah blippity blah!!! & i say...unless ur payin' me back 4 all the appt's that u dissmissed my ailments in...
i need ya ta slow down on tests & docs & specialists & such 'cause i can't afford ta be me!!!!   :-\

so yup thats my wacky^wookiness so far!!!

tamorrow i get ta see colon doc 4 high cea levels & pre colonoscopy appt!!! yaya can't WAIT 4 THAT!!!   :o
lil' background...

i have diabetic gastroperisis & it SUCKS when u have no mobility & they give ya all that MOBILITY SH#t...
u would think it would move...but alas just sits there balloonin' me up ta look 6 months pregnant & yup...
'bout the time it's time ta get scope...THAT'S wehen it moves!!! hurts a bunch & just plain...NOT FUN OR FAIR!!!  :(

much luv ta all the skin lyin' ta 'em peeps!!!

~*flutterfly sayin' no ta surgery & neurontin 'til i can get other sh#t^storm takin' care of!!! OH BOTHER!!!   ::)*~