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Thread: Peripheral neuropathy

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    Default Peripheral neuropathy

    Can I pick your brains girls?
    I have had a heavy feeling to hands and lower legs, felt swollen but look fine for a couple of years but i am now getting tingling, pins and needles and loss of feeling. I saw Gp this week and today I had my bloods done I am hypothyroid so he checked levels, He also checked by blood sugar and B12 level. I am seeing my lupus consultant in London in 2 weeks but it seems to have got worse quickly. I have had both my ulna nerves released some years ago so nerve problems are not new to me but I feel that generall things are slowly going down hill so at times I find it all a bit worrying.
    If its a Lupus thing then I must just put up with it but I worry that something else is going on.
    I just like to understand my body then I can cope with whats going on.
    Hugs Val

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    Val, lupus can definitely cause peripheral neuropathy - I've had it in my feet and legs for several years now. But that are some other medical conditions that can cause similar symptoms, like diabetes, so I guess your doctor wants to rule out other possible causes before he assumes it is lupus related. The good news is if it is lupus-related, you don't have to just put up with it, there are a couple of different meds available to help the pins and needles and other weird sensations. I take a medicine called neurontin (gabapentin) although I'm not sure what it's called in the UK. It doesn't reverse the neuropathy but does help the symptoms. And there are even newer meds available. So hopefully, once your doctor figures out what is going on, he will be able to start you on medications to help.

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    Val, I've have a peripheral neuropathy that has been affecting my right leg for several months now. I'm also on neurontin and it certainly helps with the nerve-related pain and 'weird' sensations. I'm also working with a physical therapist now who is helping me to do some 'mechanical' things to build up my strength and provide some relief. One of my rheumatologists told me that since I have lupus and Sjogren's, I'm likely to have this kind of thing happen again, somewhere (leg, arm, feet...whatever.) Not what I wanted to hear, but at least I know it can be dealt with. The good news from my neurologist is that these things can heal, at least to some extent. It can take many months, but they do improve (mine has, so it seems to be true!) Do ask about gabapentin (neurontin) when you see your specialist. I think you'll find it provides you some relief.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Default Peripheral Neuropathy

    thanks for the replys. i have neurontin, even 100mgs makes me feel like a zombie. I react so much to medication. Its 1am and I have just got up having not been to sleep coz of the pain. its both legs and both hands but right leg is the worst. Neurologist--he discharged me last year!! Brain scan ok so wasn't interested in me. I hope London Lupus clinic can come up with something on 23rd.
    Oh well another long night!!
    Love Val

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    If you can't take Neurontin, an anti-depressant called cymbalta is supposed to be very effective for neuropathy pain. I've also had good results from low-dose elavil taken at night. It took me a long time to work up to a normal dose of neurontin because it made me so sleepy and groggy, but usually the fogginess does go away if you keep taking it.

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    Just to echo Marycain's info on Neurontin. It does take time to work up to a dose that's helpful. It made me very sleepy at first. Eventually, I was able to structure my dose so that I took less in the daytime hours and more at night so I slept better. I still do that. However, I do know folks who just couldn't tolerate it...always made them too sleepy. I hope you'll find something that works for you, Val.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    My Internal Medicine doc put me on Neurontin (gabapentin) for my leg (the one with a rod in it.) While it helps SOME (esp at night) It still makes me have fits when I am up on it too much, or when the temp drops. This is Houston, people, where we ENJOY the winter, because once March starts, the heat is unbearable until about October. Should I ask my doc to have me take Neurontin during he daytime too? It makes me a little groggy, but I want to be mobile...

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    I can only tell you that it sure helped my neuropathic pain. I had to work up to the larger dose (had a bad reaction when I tried to increase too quickly) but once I did that it worked out fine. I really don't get that sleepy from it any longer.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    The neurontin also helps my nerve pain, but I can't tell that it really does much for the achy pain and soreness in my back and side where I had broken vertebrae and ribs - still need regular pain meds for that, although I've built up such a tolerance to pain meds that even oxycontin doesn't do much so I rarely bother taking it- I get more relief from the TENS unit than anything else - love it!

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    Default Peripheral Neuropathy

    I know what you mean about medication Mary. I take what I must and no more than I need. My Gp is still allowing me to have Coproxamol although it is being withdrawn from uk prescribing. It helps my bad heads without making me too groggy but doesn't help my night pain. i have learnt to sit on my upstairs computer and play games and do jigsaws until I am so tired I sleep, my hubby has to work so I don't like disturbing him with my restlessness. I suffer much worse with insomnia in the winter as well as i don't go out as much
    Val

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