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Peripheral neuropathy anyone?

528 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!
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Thanks Lily & Sally

Lily, I was dxed with a B-12 def by my GI. I haven't been getting my shots lately.
I thought my neuro problems might have been caused by my vitamin defs so I brought it up to the GI. He mentioned neuropathy & MS & sent me to a neuro May 07'. This was way before my leg pain. Most of my neuro problems at the time were in my face. She said she thought it was MS & I was sent for a MRI. When it came back ok, she did a nerve conduction study. That was so painful!!! That test was ok too. I don't know why she even did it. The only nerve problems I had/have are in my left hip because of the birth defect. After all this, she tells me it's arthritis. I already knew this.
My skin really hurts today. It usually feels like a sunburn. Lately it feels like my skin is bruised. Just my upper thighs & upper arms. Feel alot like the pain I get in my face that I call "slapped face." Starts with eye pain, left or right. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. Cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This used to happen every 3-6 months. Although my face hasn't done this in a while, my legs & arms feel this this often. I had some kind of virus in July I guess. The skin on my ear & neck really hurt like like "slapped face."
I had stopped even looking for a dx. Then I had the wreck. I have spent so much time in the dr's office. I almost have to prove that the wreck triggered what ever I have to be 100x's worse. I have got to when my case. I have to get paid for the 4 1/2 months that I missed from my 2 jobs. At the end of December 3 months after the wreck, I calculated $4,000 in lost wages.
And oh, a weird thing happened. I'm used to weird things but this was really weird. I got out of my Suburban & walked to the back. Then I just started peeing! I could stop the flow but as soon as I let go, I started peeing again! I didn't even have to go! I have a fallen bladder & have to go all the time. Bladder pain will wake me up in the middle of the night. But this time, no, I didn't even have the sensation or feeling of fullness. Crazy! I'm only 31! Too soon to wear supports!!!
Hope y'all had a great Valentine's Day! Enjoy the rest of your weekend!
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Thanks Lazylegs!

I'll be seeing the rheumy on Thursday & the doc after that. I will be bringing up the peeing thing, especially if it happens again. I've been dealing with recurrent bladder infections on & off all last year after I passed a stone in May. Maybe it's all linked together. Thanks again!
ANA negative

Went to the rheumy yesterday. My ANA was negative. Now he wants to test me for RA. I forget to tell him about the peeing problem. I did tell him about the leg pain that I didn't get to tell him about last time. His eyes popped wide open. He didn't say anything though. I was supposed to get xrays done & didn't. I didn't feel like it so I didn't remind him. I was told that he will test for what he thinks it is by your symptoms. If he's wrong, he'll test you for the next thing he thinks it is. By the 3rd visit, he'll know what's wrong. I hope so.
I go Monday to a clinical research clinic. I will get some kind of compensation to be a test subject. I just hope they can help me get his pain to stop. I may be put on a real drug or placebo. I think I'll be put into the fibro clinic. I'll let y'all know Monday how it went. Y'all have a good week!
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