The Lupus Forum banner

Peripheral neuropathy anyone?

525 Views 10 Replies 6 Participants Last post by  Lily
Hi everyone! Haven't posted in a bit. Haven't been to much up to it. Last time I posted my cousin's hubby(my 1st love) was killed in a car wreck 11/8/08. His parents were killed 12 days later in a car wreck 11/20/08. My mom's fiance of 9 years went into the hospital 2 days after that 11/22/08 & then passed on 12/9/08. So I have been rather depressed (now taking Pristiq). I had to be put on anxiety meds to be able to drive. After my wreck on 9/26/08, I feel so fortunate to have to be alive. My wreck jacked me up alot but I made it through. I am doing better now.
I am here because I have read about Lupies having peripheral neuropathy. I wanted to know if anyone here has it. The 1st rheumy I saw said I was pre-Lupus. That my blood is not positive but I have the clinical definition of Lupus. She said I wasn't treatable at that time 12/17/07. I had just started having peripheral neuropathy symptoms. I was working 6 days a week on my feet & went down to 3 because my legs hurt so bad. The rheumy said my legs hurt because I wasn't active enough. HELLO!!! I was too active. She also said my shoulder pain was from my endometriosis. I didn't know my shoulder had a period.
I just went to a new rheumy on 2/5. I did not tell him anything about the other rheumy & her opinions or findings. He thinks it's Lupus & is testing me. I go back on 2/19 to get the results & to have x-rays of my joints. Before when I was tested I only had 4 joints that hurt all the time. After the wreck, I now hurt in every joint. If I forget to take my Ultram ER, the next day I can not even get out of the bed. When I finally do, I can't even stand up in the shower to bathe myself. After I get out of the shower, I am too weak & fatigued to dress myself & have to lay back down for another 2 hours or so before I can dress myself.
My leg pain is worse now than ever. I didn't even get to tell the new rheumy about it because it wasn't killing me at the time & I was rushed through the appointment. The 1st time I had pain in my legs it was a jolting, electric, stinging, burning pain. It doesn't matter if I rest or walk alot. Sometimes it's worse than others. I wake up at night in pain. The FNP thought it was RLS. The Requip gave me night mares that woke me up crying. It also kept me awake all night so I had to take a rx sleep aid with it. Then she put me on Neurontin. It worked but I kept having to increase the dose which I don't like doing because I don't like taking meds to begin with. I now have to take 5 everyday, which I 'm sure is nothing to a Lupie.
Ok so anyhow, how many of you guys have peripheral neuropathy? I posted here because I am not dxed with Lupus, just curious mostly. I want to know if this is what I have. If anyone feels like I do, what is this? Happy Valentine's! Have a blessed & wonderful weekend!
See less See more
1 - 2 of 11 Posts
Hi Jen,
I have been dx with pn for 8 or so years. I've had several emg's done and while I don't feel anything, the nerves do still test with responses.

I also take neurontin, but use it for my migraines, not specifically for neuropathy. I am down to 1,600 mgs twice a day. I started at 1600 mgs 5 times a day. On the advice of my rheumy, I also take glucosamine/chondroitin/msm added into the rx mix. It does help a lot.

Dealing with the neuropathy is one of those things that we have now. Earlier generations of sle patients did not live as long, so they didn't really know much about these longer term problems of sle. I also have the neuropathy in both hands. I have to be careful when picking things up, to focus on holding the bowl or whatever, as I have dropped them a few times.

Take care of yourself. Talk to your neuro doc about this...... Not a fun time, but need to let him/her know what is happening.
Most definitely discuss the bladder issue with your neuro doc. Also, the new rheumy. Early on with sle I had problems with bladder issues, but it worked itself out with time, and I do not remember what, if anything, was done about it.

The reason for the nerve conduction study is to determine if the neuropathy has spread to deep nerves, or is it just a surface lack of feeling. I've had several of the emg's done and they can have a fluctuation in the responses. The last one took 3 hours with deep testing including needles in the muscles and testing nerves. not fun.

If you want to get a handle on your migraines, you are going to have to accept that there are two choices: pain with no meds, relief with meds. At the worst with my migraines I was taking 1,600 mgs of neurontin 5 times a day. There were a lot of other meds, but that was the highest with the neurontin. I now take 1,600 mgs twice a day, and can add in additional doses if I need to. Many meds have multiple uses, so you find people who take them for more than one thing.

Good luck with your doctor visits today.
See less See more
1 - 2 of 11 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.