tingling in feet

[Jen]

I have had tingling, pins and needles feeling in my hands and feet for a long time but today I also keep feeling like water drops on my feet but no water.  Very strange I am also feeling today a burning sensation in both feet. 
Has anybody felt this?

[Chickpea]

Hi Jen

Yes, all these are very familiar.  Have you also felt the strange sensation of insects crawling on your skin?  These are all signs that nerve messages aren't being recognised correctly by your brain.  They're very common but you should still mention them to your rheumy.

Are you also seeing a neurologist?  If not, your GP or rheumy might think it worthwhile making an appointment.  You could get some basic central nervous system tests.  Many of us have SjS with cns involvement and there are lots of treatments and support available.

Add these to your symptom diary.  I found the water droplets sensation quite pleasant, but flicking at imaginary insects is not such fun!

Take care - Chickpea

[navydad]

Had the burning feet a year ago, was told by my ex neuro,, nothng was wrong till this year when my new neuro finnaly did nerve biopsy, and wouldnt you know it,, small fiber neuropathy,, I could choke the first neuro,,

[lesmom]

Jen,
I get  the tingling feeling all the time, along with a numb feeling. I do get the burning feeling on and off, but its not just in my feet or hands, I get it up my arms and legs. it is worse on my right side. I hope to get more answers from it when I go to the rheumatologist for the 1st time in July.
What other symptoms do you have if I may ask?

Hugs,
Leslie

[ktfabian]

Jen-

I have the tingling and numbness on and off in my feet and legs.  We're not sure right now if it's the Sjs or a big herniated disk above a fusion of my last two vertebra. Sometimes it feel  like I have cat hair between my toes (I have five cats and lots of cat hair around) which is the weirdest feeling I've experienced yet.  I keep looking at my feet to see what's going on between my toes, then remember that it's the nerves.

I agree that you should mention it to your doctor.  If you start to notice weakness in the leg or foot that your having trouble with, I wouldn't wait til your next appointment, but go ahead and give the doctor a call. It could be a back problem with those symptoms.

Take care, Tracy

[Babs659]

The soles of my feet feel like they are on fire---especially at night.  My palms also burn, to a lesser extent.  Before I was dx I went to a neuro who told me I just had anxiety---even though the EMG showed mild peripheral neuropathy.  Now I know it was just one of many Sjs symptoms creeping up on me the past few years.

[lynnmarie219]

I have a permanent "numb area on the ball on my left foot...at first it felt like something was in my shoe (kind of felt like something was balled up in my shoe under my foot) all of the time and I kept taking it off and looking but there was nothing there. I also have other areas of numbness, tingling and burning on occasion on both feet and sometimes in my hands. My neuro said it was peripheral neuropathy from the sjogrens...but I also am a diabetic so who knows what it is from actually.


I am not taking any meds for it at this point as I don't feel its bad enough to take any more meds....its something i have kind of gotten used to and its not painful.

Chickpea.....YES!!!! YES!!!! YES!!!! I also have those darn bugs crawling on my legs and swat at them all of the time...but there is nothing there....I do understand that one for sure! It makes me crazy and sometimes people around me think I am crazy too if they see me....lol!

[Scottietottie]

Hi 

I've been telling docs my feet have been telling me lies for years. I often used to feel as though I had cold water in my shoes. Now its more burning sensations and pins and needles.

Personally I am hoping that additional Vitamin D will help with this. I have a meds review with my GP tomorrow and should be on the Vit D by the end of the week. If it settles the neuropathy any, I'll let you know.

I read up about Vit D and neuropathy can be a symptom of deficiency. Of course - it could just be part of SjS. I'll post anyway.

Take care - Scottie 

[seren]

Hi, I haven't posted in a while, just wanted to add my spin on it...I get buzzing in the soles of my feet sometimes, its so strange that I lift my feet up off the floor as it feels like its coming from the floor (its not tho) sounds a bit bizarre I know...   I have sooo many symptoms I forget to mention half of them to the Doc

[2crazyboys]

How about toes being numb?  Is that part of SJS?  My big toes have been numb for 2 years.  My thumb gets numb and then the feeling comes back. 

[Chickpea]

Hi 2crazyboys (great name by the way!)

Yes, numb toes ... my first symptom was a numb toe (next to smallest toe on right foot) and the numbness gradually spread to other toes, the rest of the foot and up my right leg.  Then right arm, left leg, left arm etc etc.  It was a couple of years before I got a SjS diagnosis, and I was stuck in limboland with 'is-it-MS-or-isn't-it?'

Does the feeling return in your big toes as it does in your thumb or do they stay numb?  Do you have other central nervous system SjS symptoms?

Take care - Chickpea

[fluffiebunnie]

I have a numb left upper arm which started at the same time as left sided neck pain.. it makes my arm ache a lot and I have tingling in my left hand... i am adding it to my list of symptoms as I am stll undiagnosed.

[2crazyboys]

Hey Chickpea,
My 2 boys are crazy and both have their own disorders..oldest is dyslexic, middle has a severe undiagnosed bleeding disorder and we adopted a girl.  My life is also crazy...but fun. My left toe has no feeling, but my right toe feeling comes in and out.  My thumb tingles on and off.  I stand on my feet all day at work for 12 hours, so I thought it was my shoes.  The numbness is still there.  I too thought I had MS or GB or some other autoimmune disorder.  Today my left salivary gland is swollen.  My rheumy appointment is not until mid June.  I have a lot to learn about SJS.  But I am reading everyone's cases and I keep saying, "that's me!"  Thank you