Crawling sensations

[daisymay]

There have been a few times lately, sometimes after eating, where I've had a crawling sensation (don't know how else to describe it) in the roof of my mouth, and some on my tongue (when on my tongue it seems to be directly below the area on the roof of my mouth, like it's connected somehow). Not a wide area, but more like a squiggly line. Today I've had a similar crawling sensation on the top of my head...feels like a bug on my head! Is this a sjogrens thing, low B12, something else??  I do have some burning sensations in my legs on occasion, but this is a different feeling. At first I feared food allergy when it was just in my mouth, but not so much now that I've felt it elsewhere.

[Carolina]

I'm no expert, Daisymay, but I imagine these are some neurological symptoms of Sjogren's.

I have many of the types of neuropathy that are associated with Sjogren's.

Talk to your rheumatologist.  If symptoms are severe and painful, patients sometimes take a medication for nerve pain like Neurontin or others in that class.

http://www.sjogrensworld.org/peripheral_neuropathy.htm#types2

Just keep a diary of your symptoms.  Things may come and go, and keeping a daily diary is very helpful for noting patterns and increase over time.

Hugs,  Elaine

[Tharrell]

Last night I was up all night with those craweling sensation. Not only that, but I was feeling like being continously zapped on different parts of my body. Then the tip inch of my tongue joined the fun and felt like something was craweling inside it. Couple all that with a good dose of RLS and a snoring husband! i'm exhausted! If it get's worse I will make my rheumy listen! Ugh!

[annette2]

I am sitting here with crawling sensations on more areas than I want to think about. It must be Sjogren's - I don't think  I have ever heard people with RA complain about this.
It's more then dry skin. My feet also have a burning sensation on the soles.

I do take a lot of B12 from reading about it here years ago.

Annette

[daisymay]

Thanks, guys! It's always good to know others "get it" and understand (though I don't wish discomfort on anyone). The more I read on here, the more I learn how many different sensations can be neuropathy (I used to even feel a shiver go up my legs). A long time ago I kept a sort of diary of symptoms, but unfortunately it made me too aware of my symptoms, if that makes sense. Any good method of keeping a symptom diary so that I don't get so preoccupied and aware of what I'm feeling (such as only noting things once per day, maybe) ??

[Carolina]

About the diary daisymay,

I do only note once a day.  In the morning, first thing on the computer I note how I slept, my weight, and comments about the day before, by morning I can summarize the day before, and note really outstanding sensations and experiences. 

Quite honestly, tho', I've more or less ignored most of the aches and pains and weird sensations that come and go.  I have a high tolerance for pain and weird sensations, probably because I had severe eczema as a child for so long (until I was 27) that I HAD to block things out.

As a result I did not KNOW I had profound peripheral neuropathy until it was already as bad as it was going to get.  Yes my feet burned, yes my legs had weird feelings, yes I was falling and stumbling and couldn't ride a bike, or walk around the block any more.  but I just figured I was in bad shape.  Of course I was still trying to do an aerobics class, but was always leaving early! 

So I'm probably on the far end of the spectrum, and I know for others it would be much harder to deal with.  And I have a terrible time.  I WAS taking a drug like Neurontin all during this time, and I suspect that it stopped a great deal of the negative effects.

I imagine taking Neurontin now, for you, would stop or alleviate to some extent most of the discomfort you are having since it is the result of nerve sensations as Sjogren's is attacking various nerves in your body.

THAT is what causes our discomfort.  We have many kinds of nerves, from tiny ones in our skin to large ones. There are nerves that control our blood pressure and heart beat, gastrointestinal system and bladder, and nerves that tell us where we are in space and orient our limbs, and communicate with our brain to help us move.

ALL of these nerve systems can be affected by attacks from our Immune System, particularly with Sjogren's.

Plaquenil and Methotrexate, and to some extent Prednisone, reduce the strength of our Immune system and thereby reduce the attacks.

Neurontin and drugs like it reduce the response of the nerves to pain and other difficult sensations (it acts on your brain to do this, they are actually anti seizure drugs that also have a positive affect on nerve pain).

What you are experiencing isn't a side effect of Sjogren's, it is Sjogren's at work on yet another system of your body.  Most often it just takes out the systems that produce saliva and tears, but Sjogren's can affect any system in our body and for some of us it does a job on lots of things.

Talk to you doctor about what you are experiencing.  You may find some relief.

Hugs,  Elaine

[Helene]

Just a thought: long term use of prednisone or steroids can cause the sensation of ants crawling on your skin.

[SjoGirl]

Tharrell what you are experiencing could be seizures. I had them for three months from March - June until I finally decided to stop taking Plaquenil. As soon as I stopped the seizures (which felt like what you are experiencing, stopped).

I believe I had too much Plaquenil in my system and learned that the only way one can find that out is by having side effects (there is no test for toxicity for Plaquenil). If these continue you may wish to speak with your rheumy.

[daisymay]

Thankfully I've never had to use steroids long term, so that's not it for me, but thanks for pointing that out! :-)

Elaine, a question based on your post: I have had a lot more balance problems over the past yr. (I'm talking about.  sometimes taking a step, maybe a little to the side, and then nearly falling or needing to grab something to keep from falling). I noticed in your list at the bottom that you have menieres. I do, too, but I'm not sure my balance issues are menieres related, as they do not follow the pattern of any of my other menieres symptoms. Is there a way to tell if that's what's causing it, or if it's from something neurological?

[Rgs]

I'm having some neuro problems like. Burning feets,muscle spasms,difficulty walking or a filling that I'm walking on water bed!!!
The same day I felt wired feelings on my feets and fingers was the same day of feeling dry mouth for the first or really close to it ...   but still after 2 years and 3 different neurologists and many tests like emg 4 times Mri 2 times qst and more.... I'm with no diagnosis or treatment.
Yes they told me to take b12 because it was 250-350 on blood tests but I didn't really tried because I know its neuropathy related to sjogren
Still fighting for diagnosis...

[Wal]

In 2007 I developed horrible parasthesias like your description. I called them crawlies that were horrid. All kinds of sensations. Docs did MRI and all kinds of testing and found nothing. It was chalked up to stress and anxiety I presume on their part. It lasted for about a year and then slowly went away. Over the next 8 years it would come and go every other month and last for a week to 10 days. My last episode was this time last year. Then my dry mouth and eyes started in January. Haven't had any episodes since the new stuff started. I will say that I started taking magnesium before bed to help me sleep through crawlies and it helped.

[irish]

I would think that the crawling feeling could just be autoimmune symptoms in general. Everyone is different and when we have several autoimmune diseases there is no way to actually pinpoint which disease is causing what. The main objective is to find a doctor who will listen and treat ones complaint.

I have 5 autoimmune issues and I have no clue whatsoever what is causing what. I just have to roll with it and be thankful when the symptoms goes away. However, we all know that we just get over one ailment and an other one will strike. Just  keeps us on our toes. Irish