Misery

[salsen]

I have been going along for awhile keeping pretty even keeled.  Now suddenly yesterday the pn decided to flare big time.  What a pain -  LITERALLY!!!!!!  The feet are burning all the way up above the ankles and now the fingers feel like something is crawling on them.  Stupidly I keep checking to see if something is there.  Of course there isn't   -   it's just the pn playing late  night games.  It has been awhile since I have had a flare so I was lulled into a sense of false security.  I fell right through the bedroom door tonight.  My husbands is jerking around wanting to know what is wrong.  Basically nothing.  Just lost my balance when I opened the door and zigged when I should have zagged.  It's looking like it is going to be another long night just like last night.  Me and Ben Gay have already had our nightly clandestine affair.   Hopefully things will settle down again soon.  As usual  nothing out of the ordinary that I know of that might have set it off.   Thanks for listening to my late night vent.

[Pooh]

Good grief Sal, it must be a moon phase.  In the past couple days I have fallen twice.  Wednesday night I fell in the livingroom, no flare, just my legs gave out and down I went.  Then Thursday morning going out the kitchen door to get in the car out in the garage, I missteped and lost my balance, went down the last step and sprawled over the hood of my car.  Not very graceful, but I sure would give it a 10 for variety.

I must be learning to fall correctly because all I got out of my adventures were a couple bruises, a stiff neck and a sore knee.  I consider myself lucky. 

I sure hope that flare eases up soon and your burning feet and ankles leave.  Also what ever it is crawling around on your hands.  I get those feelings on my face when mine flares and it feels like hair blowing on it.  Drives you nuts doesn't it? 

Take care and I hope you are feeling better soon.

Hugs, Pooh

[Patze]

Hi Pooh, I'm glad that you weren't hurt!!!  By the way, were you trying out for the position of the hood ornament?

Hi Salsen, I'm glad that you weren't hurt in the zigzag!  I know what you mean about losing your balance; it doesn't happen often, but it has occurred from time to time.  I know with me, it's because I'm beyond exhausted and stressed.  The neuro and the rheumy don't know what's up either.  I sure hope that your PN goes away, and that you feel better soon!

Take care -

Patze

[lynnmarie219]

Pooh and Salsen-

I'm glad that neither one of you were hurt badly! Lets not have this turn into a competatition for who can do the best trick please..... .



Salsen...I know what you mean when you say:

"the fingers feel like something is crawling on them.  Stupidly I keep checking to see if something is there.  Of course there isn't   -   it's just the pn playing late  night games."

I get this feeling often and I still swat or jump when I feel something on my lower legs or arms. Sometimes people think I'm crazy....but I don't care....they don't have a clue what it feels like...and its just a reaction most of the time! 

What's really embarrassing is when I get the zappy feelings like one of those "invisible crawly things" bit me! Then I'm really swatting and sometimes yell ouch! Then people really look at me...I just say something bit me....don't even try to explain that there is nothing there...its easier that way! And they wont have have me committed for getting bit by invisible bugs!   



Hang in there...hope this flare runs its course soon and your feeling better fast!

[Sandra]

Hello pooh and Salsen you two seem to have things figured out a bit regarding pn. I am very new and at it. I just saw a neuro in July for an initial visit and after allot of finger, balance tests told me in a generalized way about "sometimes in sjs the cenral nervous system becomes involved" he spoke more about sensory and autonomic problems. He was vague but ordered an MRI of my neck and I will see him again in November.
I notice terrible cognative changes, they scare me the most. I am just plain off balance quite figurativley and literally. Do you have involvement of your head/brain? I feel it originates in the back of my neck. I become very unstable and shakey, my eyes blurr and I get double vision. It is a constant battle to stay upright and to keep going until I come to a point where the all consuming fatigue associated with it takes me down to tears and to bed. Can you tell me if what I'm feeling is neuropathy or am I just loosing it. Thanks Sandra

[Scottietottie]

Hi Salsen 

I'm sorry to hear you're flaring and falling. Not good! I fell out of the front of a tent the other night on my way to the toilet block and I'm still not sure whether I tripped over something, whether the ground was uneven - or what. 'Luckily' it was soft and muddy - so no harm done that a washing machine won't fix!

My feet have also been feeling somewhat 'toasty' recently but I'm lucky in as much as its not actually pain - just a lot hotter than it should be without feeling warm to touch. The AC in the car pointing floorwards didn't help it.

I'd hate to have the crawly feelings. Am not good with 'bugs'.

Pooh - I'm glad you didn't hurt yourself - but good grief - I'd give Fred a good talking to!! 

Sandra - brainfog seems to be part and parcel of SjS. I assume as you are being monitored your thyroid will have been checked. The worst brainfog I ever had (plus some episodes of dizziness) was when my thyroid became underactive. medication helped a lot but brainfog still hangs around a bit.

I can reassure you that you are NOT losing it. (and don't let anyone tell you otherwise!)

Take care - Scottie 

[Patze]

Hi Lynnmarie,

Oh, I know that one!!!  The crawling feeling is the worst!  I've often gotten up and looked to see if there is a bug in the bed with me (other than the kitty that is!), and never finding anything.  Does cat hair count?

I sometimes have that feeling when I do a lot of walking, it's hard to walk, swat, and scratch.  Hey, I can barely walk and chew gum as is, so you know that I'm going to have some problems!!   I also figure that if they've not committed me yet, they're not going to, so let's all scratch and ouch away!

Take care and I hope everyone feels better soon!

Patze