[Jen28]

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

 

[Lily]

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

 

[Pink Pearl]

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.
Sally

 

[Jen28]

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!
Jen

 

[lazylegs]

Hi Jen,

You need to see your doctor as a precaution. It is possible something neurological is going on. It is definitely abnormal to have an incident like you had. If the loss of bladder control continues I would even suggest going to the ER.

Take care,
Lazylegs

 

[Jen28]

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!
Jen

 

[nettyunicorn]

Hi just thought i would add a comment. I'm sorry you have been through so much and wish i could offer you help.
I have been struggling with numbness and tingling plus pain in hands and feet for years. I have googled symptoms many times and each search comes back with peripheral neuropathy. I have now begun to get numbness on face and ear and like you have a few accidents with the water works, luckily never somewhere public. I am at present awaiting a nerve conductivity test for carpal tunnel and possible ulna tunnel syndrome but to be honest i think it is the tip of the iceberg. Thing is Doctors can only be told the symptoms and you hope they will peice them together. If you start suggesting diagnosis's then they tend to get rather cross and ultimately your medical care suffers. Good luck and keep us informed.


Nettyxxxxxxxxxx

 

[Pink Pearl]

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.
Sally

 

[Douglas]

Howdy Jen,
Sorry you are having such a tough time; sounds like many of us.
You ask "how many of you guys have peripheral neuropathy?" 'Twas one of my presenting symptoms. Later when it had become much worse I asked the MD about it. His reply, "Learn to live with it." I have.
There are only three real problems with peripheral neuropathy:
1) it hits a foot and leg and you "fall down go boom", as our daughter said when she was very young;
2) it hits when you are riding your motorcycle and makes life very challenging; and
3) it just drives you blazing bonkers!:rotfl:
All the best.
Douglas+

 

[Jen28]

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!
Jen

 

[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