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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/30/2016 6:36 PM (GMT -6)   
Finally some news from a new neuro on my foot tingling.

Even though my Lupus and my Sjogren's are in remission, he says both diseases can present with tingling. Lupus neuropathy is generally in the large nerves, and presents more as weakness, while Sjogren's neuropathy is in the small nerves, and presents more as pain. Of course, neither presents as episodic like my feet are doing, so...

We wait for another episode, then try to get blood & nerve testing done while the symptoms are present.

The really disappointing thing is that my rheumatologist, who is supposed to KNOW about Lupus & Sjogren's, sent me to a podiatrist and didn't mention (or know?) that both diseases can cause neuropathy.

More fun with auto-immune disease...
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 7/1/2016 9:35 AM (GMT -6)   
I've been dealing with nerve pain for the last 2 or more years. I feel your frustration because not many doctors are familiar with how to locate the issue and how to treat it. My rheumatologist actually referred me to my neurologist who did a muscle biopsy to test the small fibers. The results came back totally opposite of what the doctor thought they were going to (not sure why) anyway, it turns out I have small fiber neuropathy. They tried to treat it with lyrica, then gabapentin but I can't handle either. So, right now I'm trying to manage it by increasing my Effexor. And my rheumatologist said that the IVIG therapy should begin to help with nerve pain as well.

I know the pain you are in and that there is nothing out there to bring you relief, I'm so sorry you are going through this. You might ask him/her about doing a small nerve biopsy as small fiber damage is rare, but does come with Sjorgrens and Lupus and there are things they can do to treat that.

Hugs,

Melissa

Post Edited (Melissa D.) : 7/1/2016 8:39:14 AM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 7/1/2016 11:12 AM (GMT -6)   
Melissa,

Thanks for your support. Is your neuropathy in you feet or where does it effect you? On the 1-10 scale, how much does it hurt? Mine gets to 9 during an episode. Do you have tingling or just pain? Does yours hurt all the time or just sometimes - if only sometimes, do you know what triggers it or helps relieve it?

Thanks!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 7/1/2016 11:41 AM (GMT -6)   
Mine started in my right hand and went up my arm and into my shoulder. It has now moved into my right ankle and foot. On a scale from 1-10 it is a solid 8-9, and there are times it is a 10 plus. I don't know what triggers it, I do know that activity does ascorbate it. I do try to alternate heat and ice and I do get some relief from that, but not much.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/1/2016 9:48 PM (GMT -6)   
I've been having the tingling in my feet, too.
Most of the time it kicks in when I walk.
It's a strange feeling.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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