Strange sensations in both feet

[Deseree]

I am wondering if anyone here gets strange pulsating buzzing sensations in their feet? Ever since this started two months ago, I thought my dry mouth was the worst symptom I've had to deal with, but now, for the last four days, I've been experiencing these buzzing feelings in both feet, off and on along with the continued dryness. It feels like I'm standing on a cell phone that is ringing, or like my feet are about to fall asleep but they don't.

No doctor can figure out what is wrong with me yet, but if this is Sjogren's, do you guys think it is possible for the dryness and now neuropathy to start all in such a short time frame? I'm starting to get really freaked out. I suppose it could be an irritated nerve because I have not been able to exercise like I used to due to the extreme dryness. I just feel terrified that if it is Sjogren's, it is progressing really rapidly. 

[Sooki]

Yes, I get that from time to time. You've described it well.  I describe it as white noise (like static on old tvs), but it's quite uncomfortable.  My rheumy suggested it was a kind of neuropathy, but didn't really suggest anything for it.

I hesitate to say this, because it's so weird, but it happens when I eat rice.  Maybe some other grains as well, but definitely rice.  My body is so weirdly unique, that I'm just happy I have a personal fix for it. It almost never happens when I eat right. 

Did your rheumatologist suggest anything for the Sjs symptoms?  It could be that starting on immune suppressants (plaquenil?) might ease the dryness as well as slow or stop any progression happening.

If you're new to Sjs, here are my basic standbys:  vitamin D3 (optimal blood level 70K), fish oil (lots of high quality), ubiquinol (for saliva), play around with diet (my personal goto - autoimmune protocol, but it doesn't work for everyone).

[happylife]

Pudendal nerve irritation or sciatica can cause this symptoms.

I had this buzzing sensation in my rectum and my neurologist told that it was due to pudendal nerve irritation.

[araminta]

Deseree, I get this vibrating sensation occasionally in my feet, and yes this started for me around the time most of the other symptoms started.   I was doing some gardening and suddenly thought the ground was vibrating under my right foot, it was very strange.

As it's a minor nuisance compared to the other symptoms, I don't worry about it.

[Carolina]

Dear Deseree,

A visit to a neurologist might help clarify possible diagnoses.  If you have dry eyes/dry mouth that is an indication that you have neurological damage to your moisture producing system (that is what Sjogren's is, for example).

And yes, a short time frame, while less likely than an extended time frame, certainly is possible.

All of my 'conditions' are the result of damage to my peripheral nervous system.  I started with dry eyes/dry mouth in 2002, and by 2010 I had disabling Peripheral Neuropathy in both legs.  Between 2002 and 2010 I developed neuropathological damage to my hearing, and my bladder, as well as chronic anemia.  For years I thought of each 'problem' as a separate condition.  But I now know everything is related to damage of the nerves in my organs and systems.

After 2010 the Peripheral Neuropathy in my legs and feet more and more disabling (I now wear braces and walk with a walker) and I also developed Small Fiber Neuropathy in my hands, arms, and face, minor damage to my lungs, and peripheral neuropathy in my gastro-intestinal system (esophagus does not contract properly, and the valve at the bottom doesn't open so food cannot go down to my stomach, and my small intestine doesn't move bacteria along to my large intestine (weird, eh?))

The neuropathies that develop from Sjogren's and similar conditions usually cannot be truly 'treated'.  What I have are 'palliative' treatments.  Rather like what we do for Sjogren's most of the time....ease dry eye and dry mouth with sprays, lozenges, eye drops, etc, or stimulate more saliva with Evoxax/Salagen.

The only real curative treatment I have heard of for some types of Peripheral Neuropathy is high dose IVIG administered very frequently over several months.  Sometimes that treatment stops and cures PN.   I don't know the details of the cases in which that treatment works. I am not eligible for the treatment.

Establishing an early relationship with a neurologist (If you haven't already) will allow you to track and test if there is any progress in your symptoms.

I did NOT see a neurologist until the damage to my legs was profound, and even then I saw him for a different problem (headaches) and he only diagnosed my PN when he watched me walk.

I was so oblivious to the onset of PN (buzzy feet, progressive difficulty walking, tripping and falling).  I thought I was just 'out of shape" and needed more exercise!

You probably won't have progression, Deseree.  Most people do not.  There are a few, like me, who get the whole 'menu' of peripheral neuropathy.  But most do not.

Worry doesn't help.  But that's easy to say.

My best advice is to seek out a neurologist at the University Medical Center in your state.  That may involve travel, even with an over night stay, of course.  But at a Medical Center you will be able to get the most advanced medical care and advice, most of the time.

We moved 8 years ago to our home in North Carolina because there are 2 University Medical Centers within 20 miles of our us.

In time researchers may identify more than just palliative care for my sort of neuropathy, for all neuropathies, really.

Stay strong!  Live your life, Deseree.  There is so much more than 'conditions' for us in our lives.

Regards, Elaine

[SjoGirl]

I agree with Carolina, if you have not, consider conferring with a neurologist. Like many others on this site, I have several conditions, including significant issues with my spine (top to bottom). I get weird sensations all over, from head to toe. Some I believe is from neuropathy, while some, as Carolina pointed out, maybe from nerves being pinched.