Peripheral Neuropathy Questions

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New Member

Date Joined Apr 2010
Total Posts : 3
   Posted 5/1/2010 9:36 PM (GMT -6)   
Hi everyone,

How many of you have peripheral neuropathy with your Lupus? Is it something that can be halted or reversed, or once you have it, you're stuck with it? More specifically, is it curable, or only treatable?

I have yet to be formally diagnosed, but I am certain I have it (painful electrical shock sensation in both feet and lower legs when touched). Because the pain is so severe, I am wondering if that is a bad sign in terms of irreversible nerve damage.

I will be seeing my regular doctor next week and rheum. in a few weeks with hopes they will refer me to a neurologist. I did have an EMG done last year (it was clean) but this was before the pain began.

Thanks for your help.

Jaime K.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 5/1/2010 11:46 PM (GMT -6)   
It seems to vary a great deal in how much or when you can recover. My neuropathy was directly related to lupus inflammation, and we were able to get the inflammation under control before there was permanent damage.

There have been forum members here who have had permanent damage, but as far as I remember they had the 'tingling' and 'itching' types of neuropathy, not anything painful to the touch as you describe.

I'm glad you'll see a dr soon - I'd press them for rapid treatment rather than waiting for it to get worse.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/1/2010 11:46 PM (GMT -6)   
Hi Jaimie, I did some research on your question and I came up with this link which seemed to have a lot of info for you.
I apologize for the advertisment. I was going to just copy and paste the info but there was so much that I didn't want to waste space on this forum. Besides it says there is a link to click to the real advertisement. It was talking about people that have diabeties having it as well. I thought that forum might have some good info for you as well. The more I read the more I thought about fibro and wondering what the difference was. So I will be following this thread to see what new stuff I can learn.
I hope you get some releif and some answers

nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3

Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 5/2/2010 1:09 PM (GMT -6)   
Hi Jaime,
I've had my neuropathy for years (from Lupus) and it has slowly gotten worse but then so have I.  It's in my legs & feet and it causes numbness, tingling, itching, shocking, stinging etc. My legs need to be elevated nearly at all times. They can only treat the symptoms of neuropathy there is no way to cure it. My neuro said that once my lupus was under control the neuropathy would stop advancing. He could not guarantee that the damage wasn't permanent but he said that nerves can repair themselves and if they do it would take time. My lupus is not under control right now so I have to accomplish that first :) I hope you find a neuro that you like who will help you through it. Best Wishes! Mellissa
Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Erythromelalgia, GERD, B12 & D deficiency
Rx:  Plaquenil, Imuran, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Ranitidine, B12 injections , Vit D, Potassium

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 5/2/2010 7:39 PM (GMT -6)   
Hey. I just wanted to chime in that I've developed peripheral neuropathy within the past few weeks. It's on my right thigh: tingling, burning pain, loss of sensation. Considering I'm fat and have diabetes, I'm surprized I haven't gotten it sooner. I'm also interested in what you find. Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 

New Member

Date Joined May 2010
Total Posts : 3
   Posted 5/9/2010 5:52 PM (GMT -6)   
Oh the joys of lupus!!! I and my rheumy thought for months the horrific pain in my feet everytime I walked was raynauds which I do have, but I knew that this wasn't the same kinda thing I knew raynauds to be, sooo long story short visited foot Dr who immediately knew it was PN and was sent to neurologist for testing ( I also told Rheumy this and that the clozempam sp helped and she was pretty certain it wasn't and couldn't see how the clozepam would help the raynauds) well It was!!! I HAVE to take amitriptline -sp- to walk!! I have had one heck of a couple of years with this Lupus and all the things that have followed, but thankfully we have come to a good combinations of medications that are working. It took me more time to get over all the medication I have to take then dealing with every new corner, but I figured if I'm not in pain and can get out of bed to take care of the fam it's worth it. One good thing that came from the pn I was sent to swim therapy and I have come to love to swim as my form of activity.
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