Hi,
Welcome to the group :)

I'm not going to be much help here, but yes, about 3 or 4 months ago I started having symptoms of Neuropathy - numbness, but also sometimes a burning sensation, in the tips of my fingers and occasionally the tips of my toes. When I asked my Neurologist a question (forget what it was) she replied "Gee, when it comes to all that science-y stuff I kinda just check out"

At that point, I checked out and am waiting on a referral from my rheumy for a new neurologist lol...My rheumy did mention that Gabapentin is often used to treat neuropathy, but we haven't gotten that far into a discussion about treatment options yet.

Best, LuLu

I saw a new rheumy yesterday and she started me on Cymbalta which she said may help with my pain and numbness. My three smallest toes on both feet get numb and tingly (as do my hands and arms from the elbow down). My feet also feel like I have been walking miles even if I haven't been on my feet much at all. This new doc checked me out more than the other that diagnosed me as having Sjogrens in June. Her initial diagnosis on my check-out papers said Fibrominalga and Sicca Syndrome. If the 3 weeks of samples of Cymbalta help she will call me in a script to continue. I also take Plaquenil which I have been on for 2 months. I will let you know if I get any relief with the Cymbalta. I also read that massage helps the nerves, too.

I have neuropathy.
Mine started with spinal problems but since my diagnosis of RA & SA it's progressed & moving into my feet.
Drives me crazy & I've wondered why it's effecting my feet.
Both hands also. Very very painful. Hard to treat also.
I take prednisone for my RA flares & that seems to help.
I wish you the best of luck,
Sammy

I have been having trouble with my big toe on my left foot sense last winter. At first it just seemed like it was kind of turning white and I thought it was circulation. Now it seem numb on the end and I guess you could call it burning. It's a strange sensation, don't know exactly how to describe. Sometimes when I touch it a certain way it seems like a little shot of electricity shoots through. Both of my feet really hurt and I can't find shoes that don't hurt somewhere. The skin on the outside of that toe is really dry too. I sometimes buff it to smooth it out. I have a couple of toes on the other foot that are numb but I think that's from a fall I had several years ago when I sprained my ankle really badly. I didn't notice that my toes were numb till much later. I take Plaquniel for stiffness and I take Celebrex for pain. Still hurts and I'm still stiff. Does the big toe sound like neuropathy to you all? I have to go to the doctor in a couple of weeks . I don't have a rumy. So far , comparing my symptoms, so many of you have so much trouble than I do. But I think my symptoms are progressing. My doctor has never seemed very concerned and doesn't talk to me much about Sjogrens. Most of what I've learned is through research and you all. HE actually told me to Google it when he first told me that I tested positive for it. He never even gave me any numbers like you all talk about.

yes, I have neuropathy in both feet. Have been helped by Lyrica, though I gained thirty lbs. I am very careful with what shoes I wear, and take a gabepentim 300 at night, and Lyrica 50 twice a day.

I cream my feet and wear sleep socks at night. When too much pain I rub my feet with voltaren gel. It's sticky but it helps with pain.

LuLu1586
Have not read much from you lately. Was worried; are you OK?
You have always been very involved on this discussion group and I have not read anything from you for the past many months.
Wishing you well.

Ihave nueropathy as well as Raynauds in feet and hands-just to add to all the other health challenges. One of the best things I do for myself is have a pedicure with reflexology foot massage every six weeks. Reduces pain in my feet and actually improves sensation.

This article from the Moisture Seeker's (Sjogren's Foundation publication) describes Neuropathy and I noticed that it said from 10-20% of Sjogren's patients have neuropathy.
http://www.sjogrensworld.org/peripheral_neuropathy.htm#treatments2

Here's an extensive article from the National Institute of Health:
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#115883208

As Meg66 mentioned, it may also be Reynauds which can cause your fingers & toes to turn white when chilled. I have to wear gloves whenever it get 50 degrees or lower & I make my husband get things out of the freezer because of the Reynauds.

This article on the Sjogren's Foundation website mentions that 15%-30% of Sjogren's patients have Reynaud's and offers tips to control your Reynaud's:
http://info.sjogrens.org/conquering-sjogrens/bid/273779/Our-Top-5-Tips-for-Raynaud-s-Syndrome

I had problems with severely itchy hands and feet for several months, especially with temperature changes, then, it simply went away and I haven't had it for a couple of months. I also get intermittant pain in my big toe joints.

I also have fairly bad joint pain in both thumbs, which I understand is fairly common in Sjogren's. Some nights it wakes me up, even though I take a double dose of Naproxen before bed.

With the way symptoms seem to come and go, this is one weird disease!

I have found good relief with a new OTC product called Kerasal Neurocream. Kerasal makes many creams,...only the new Neurocream does the trick. If you have neuropathy symptoms, it is probably work trying this. It is only for the feet. It can be purchased at major drug stores. I got a coupon not too long ago at the Kerasal website for a few dollars off.

I am cancelling my appointment for Friday, because I doubt they will be able to assist. For me it feels like I dropped a pan on the top of my foot and the pain is throughout the foot on the top and on the bottom, I have been using essential oils with some results.

Been using essential oils, for other things also.

I am glad the essential oils are helpful. The meds for neuropathy can be strong...but often necessary.

I go to this other website and mentioned the very good results I was getting with the Kerasal NeuroCream and was shocked that it was a long time before someone at least tried it. He tried it because he saw my post and someone frOm the medical field also told him it has been helpful to many folks. He is getting big improvement and so am I .

as I said, I have found good relief with a new OTC product called Kerasal Neurocream. Kerasal makes many creams,...only the new Neurocream does the trick. If you have neuropathy symptoms, it is probably work trying this. It is only for the feet. It can be purchased at major drug stores. I got a coupon not too long ago at the Kerasal website for a few dollars off.

Additionally, there is a new Epsom Salt cream that helps me a little...some people have been getting good results. I think it might he MortOns...not easy to find.

What are the essential oils you are using?

I think it is great when we find natural products that offer very good help!

Oh , I forgot, it might be a long shot, but for itching some folks mentioned on another website two helpful products. I think they work differently, so if One doesn't work, might be worth tiring the other:

1.The new Morton's Epsin Salt Cream
(yes, this is related to the stuff you put in bath water)
2. Sarna Anti Itching Cream

And for overall issues, as u may have mentioned on another thread, someone told me that Jarrow has a newish Neuro supplement with a variety of ingredients, one primary one being R Lipoic Acid, so if you know you can take that, it might be worth a try. I haven't tried it yet, but probably will.

I have had this in my hands and feet for the past few years, numbness, overall pain and very bad cramps. It always felt like I had hiked 10 miles in ski boots that were too small for me (ouch). My rheumy thought it was neuropathy but a specialist said it isn't (but didn't offer any other solutions), I was also told that it could be a side effect of the prednisone which I have been on for a while. In the winter of 2012 it was getting really bad and very painful and I was have constant flare-ups. Was on Lyrica for a while which helped but i really don't want to be on so many medicines as they cause their own problems (already on prednisone and cellcept). My rheumy wanted me to get checked for celiac disease as he was suspecting this may also be a problem. Turns out I am celiac and, as a result, was very malnourished as my body was not absorbing anything. In particular I was severely low in B12 and was put on high doses of this and other vitamins and minerals immediately. After one week of taking the B12 the pain and numbness in my hands was so much better. I still get it but only during flare ups and it is a manageable discomfort. I'm am now on my 5th month of absolutely no gluten, soy or dairy, 3 months of no grains and 4 months of massage therapy (focussed on circulatory and lymphatic). The dietary restrictions are an inconvenience but doable and definitely worth the result. I am feeling so much better that I am hopeful this is the beginning of my road back to good health. I don't think that diet alone will get my SS into remission but I feel that I am getting back to only dealing with the SS. I have just started working with my doctor to reduce (with the aim of eliminating) my prednisone - would not have thought this possible 6 months ago. I know this may not help everyone but it certainly helped me and has significantly reduced the pain and numbness in my hands and feet (and arms and legs). it is also much better than taking more drugs.

So wonderful to hear of these natural methods that have been helpful I do think that optimizing my B12 and D3 intake has helped me. I'm looking for ways of improving my diet as well. I do believe sugar is a big problem (at the very least). Hope you continue to feel better and thank you for sharing this!!!