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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!
Jen
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Hi Jen,

Sorry you are dealing with this I hope your Rheumy ruled out a Vitamin B12 deficiency before prescribing the Neurontin. I have PN and it has helped me a lot, I find I'm ok on 1200mg (400mg 3 x daily) it has a short half life hence the 3xdaily dosing. Some people here take much more than that though.

love
Lily
Hi Jen,

I know from your past experiences you are fed up with docs and trying to sort this out, but if you want to improve your quality of life there is little choice left but to push on.

If this is lupus with you then it will help both you and the docs to get answers if you adhere to meds you are supposed to be taking and also inform them of any other meds you are on that the particular doc may not know about - keep them in the loop they don't always communicate that well amongst themselves.

Likewise it's important to get recommended tests done to either rule something in or out. He probably has good reason for those x-rays. It will help him unravel the mystery so it's important they are done.

Many of us have had to go through tons of testing to rule things in or out before the picture became clear. I know I got sick of it but it was the only way forward.

Wishing you strength and fortitude :)

love
Lily
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