Tingling toes

Hi everyone My feet and legs, arms and hands, have lately been very wired. They feel numb but at the same time it feels like there is electricity flowing through them all the time. Does anyone have these problems if so what is it and how can i help control it.

Hi Brenda,

Have you mentioned this to your primary care physician? He will most likely send you for the nerve conduction test, which is done by a neurologist! If you have any spinal issues/injuries he may also want to send you for an MRI to have a good look and report.

There are meds like Lyrica or Gabapentin that may be prescribed, but I have a feeling the Dr will want to do the tests first.

Hope this is a help to you, and that you get with the dr very soon to have this addressed!

Wishing you well,


Hi Brenda, I haven't been getting any tingling (yet), but I have been getting these weird twitches in my arms and legs. I could be just sitting and watching tv or playing on the computer, and then randomly my leg or arm will jerk. Sometimes I get them in my back and it will cause my shoulder to lift a little. It's really weird, and I definitely was NOT getting this before I started having all the other symptoms. I told the rheumatologist about it, but he didn't think it was related to the Sjogren's. (Although I like him so far, I definitely have to disagree with him about this.) My primary doctor is concerned too, and she's going to refer me to get an EEG and is going to send me to a neurologist.

From what I've read, Sjogren's can affect the nervous system, so you should talk to your doctor about it. Don't panic about it just yet though, because it might turn out to be something minor that can be easily controlled or treated. I don't know how to control the tingling feelings you're getting, since I'm still new to all this myself. Sjogren's can also affect the blood vessels, such as with Raynauld's Syndrome, where your blood vessels in your hands and feet can temporarily constrict, causing them to get cold and pale. I'd assume that would cause tingling sensations. I get it in my feet, and they feel freezing cold most of the time...but strangely, only my toenails change color! So, really, tingling could be caused by a lot of things. Either circulation or nerve conditions would be the first place to start. If your hands and feet get cold in addition to the tingling, then try to keep them warm. Raynauld's is usually triggered when your extremities are exposed to cold temperatures. (Even something as simple as air conditioning could trigger it).

In any case, ask your doctor about it because I'm sure it is related to the Sjogren's or whatever other conditions you might have.

Sounds like neuropathy. Gabapentin has the least side effects and works well for most chronic pain including the kind that you describe; Lyrica is commonly prescribed, but may have more possible side effects. Your pcp may want to send you to a neurologist, but sometimes just trying the medicine may answer the question of what this is.


I have numbness and tingling in my feet and pain in my toes.(Pain seems to be mostly at night.) I've had the nerve conduction study and EMG which showed nothing wrong but they assume it's small fiber neuropathy which doesn't show on these studies. My rheumatologist has started me on a low dose of Gabapentin (neurontin) which I seem to be tolerating well.

Neuropathy is a common occurrence with SS. Just one more thing that many of us have to deal with. Definitely speak with your doctor about it because the meds can help with the pain.


Due to many skin issues I just finished reading up on SS some more. After going through EEG and nerve conduction tests the doctor shrugged and said that I have peripheral neuropathy but the nerves are not bad enough for a clear cut reason why I have it. One more doctor that doesn't know a thing about SS or Lupus or Fibro, etc. I was up to 3200mg of gabapentin and was still having a lot of nerve pain mostly in my feet. Went to my internist and he put me on the combination of Lyrica and Cymbalta. He says the combination is what helps. So, for what it is worth, this may help someone else out there as it has me so far. I have been on the combo since the first part of Sept. good luck, all.

Hi everyone thanks so much for all your replies. You have all helped me feel a little better knowing that im not alone in all this. I have a Rheum appointment tomorrow morning at the Royal North shore Hospital clinic. I’m hoping that they will be more up beat with the latest studies and treatments, as my old Rheum’s were quite old and I feel outdated and not very compassionate. I feel like the thought I was imagining or exaggerating my symptoms as I am still so young(35), my last rheum said that all my pain that I am experiencing is due to depression not Sjogrens, I was speechless as I did not even feel depressed. I have had Sjogrens now for 14 years (21 when diagnosed) without medication or information about what is happening to me and how to prevent it getting worse. I cant wait to get some real help.
Thanks again to you all for your replies it really did help.

Hi Brenda, I’m glad that you have taken the step forward to see a Rheumatologist. I am ever hopeful that each one of you will find ‘your Doctor’. I hope you get some solid answers, and respect.

Please read my discussion on DX Sjogrens and lesions on the brain. Lots of helpful posts on the CNS