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    Old 05-06-2014, 10:57 AM   #1
    Painat41
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    Unhappy newbie to neuropathy

    I'm a 41 year old female and about 2.5 months ago begin feeling strange "electrical" like sensation in my right toe, in fact, at first it felt like a worm wiggling...I know...creepy, but it did....soon thereafter, I starting feeling this electrical like pain flickering, then the right foot became numb and everything repeated on the left foot, next my hands. It has been about 2.5 months or so and I have seen a neurologist who took 14 vials of blood and I have had a brain MRI, both were negative. It is my understanding he was ruling out metabolic diseases/disorders as well as MS with the brain MRI. I still have to have my EMG/NCV on 5/22, I can't wait to find out exactly what nerve damage has been done and hope to have more answers as to what type of nerve fiber is damaged. His initial impression of my symptoms, which I will expand on in a minute is Sensory Neuropathy. I have so many symptoms, it's ridiculous. In addition to the electrical, intermittent pain flickering, I have numbness, comes and goes, coldness to my toes, extreme muscle aches in my calves and my forearms. I have weakness and have noticed my strength is changing, it is getting worse, I drop things all the time and I'm stumbling all over the place. He also noticed a tremor on my initial visit and I'm pretty sure I failed the Rhomberg test because I couldn't stand still without putting my foot out to catch myself from falling with my eyes closed.

    I'm dealing with all the pain without anything at this point, I'm grinning and bearing it, but it is becoming very unbearable. I have a very high pain tolerance and cannot take the Gabapentin that he has prescribed nor any narcotics, I'm allergic to them. In the meantime, I'm trying anything, hot baths, heating pads, ibuprofen. There is only small, I say again - small relief with these methods. I called today to see if the dr. could call me in some Lidocaine patches or something like that. I haven't heard anything back, just getting so frustrated because the pain is getting to me. It is hard to explain to people what is wrong when they look at you, when you "look" fine, but the inside is a mess. My muscles will feel very shaky inside and just ache and ache and I also have patches of burning throughout my whole body, mostly legs and arms, but torso occasionally....it really is awful! I'm still working my regular 40 hour week and have 3 kids, my husband feels like his hands are tied and doesn't know how to really help me, but he is sympathetic. In fact I'm starting a new job next week, which I am excited about, the timing just isn't that great, but it is a great opportunity for me.

    Anyway, sorry for the long post, I'm reaching out so that I can speak with people who are going through this to have some support and hopefully find some remedies that some people have tried.

    Any suggestions on pain relief aside from the Gabapentin or narcotics (no offense to anyone taking these, I just can't personally take them), would be appreciated.

     
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    Old 05-07-2014, 06:13 AM   #2
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    Re: newbie to neuropathy

    I'm actually responding to my own post.... I just wanted to add that I have picked up the Lidocaine patches and I tried them last night, I took 1 patch and cut it into strips and placed them in various areas of where my pain is (mostly arms/legs, feet, hands...) and it did seem to help reduce the pain, I have only tried them once but will use them again tonight. I like it that there are no side effects (as least for me). My doctor also called me in some Voltaren gel, ofcourse NOT to use together but when I run out of the patches or to see if it works better than the patches. The patches were not covered by my insurance and 7 patches cost me $55, that is with a 10% discount the lady at the pharmacy applied for me. The voltaren gel is $30, so a little cheaper and I have 2 refills. Anyway, I just wanted to update my status. I'm so happy to actually have something in hand to relief some pain. It can be so frustrating to have pain all day long with no relief. I hope that some of this will be helpful to some of you suffering with the same problems.

     
    Old 05-07-2014, 09:09 AM   #3
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    Re: newbie to neuropathy

    I have been dealing with neuropathy for about 8 years. The nerve conduction will tell alot about the type of neuropathy you have so that is good that you have that soon. I take nortriptyline for the pain and it is not a narcotic or anti-seizure drug and is very inexpensive. I take that with Lyrica and works most of the time. For the burning, I use ice packs or frozen peas and that stops the burning. That might be something you can try. Allie

     
    Old 05-07-2014, 09:29 AM   #4
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    Re: newbie to neuropathy

    ive been dealing with neuropathy going on 4yrs. i use the lidocaine gel and the voltran gel only when my feet are at the point when they can not touch the floor because unlike you my insurance dont cover the voltran and it cause me $65 a script. i also take Kappra which is a anti-seisure med along with lyrica which iam still working on the dosage for releif.
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    Old 05-07-2014, 09:30 AM   #5
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    Re: newbie to neuropathy

    Thanks for the suggestions, I will try that for the burning. I haven't heard of that medication and will look into that too. The pain is terrible, how in the world can I do this forever? I'm still in the process of figuring that out. I'm at work and my hands and feet and calves and forearms hurt so terribly, I need to find something to use at work. As you know I just started the patch and you have to wait 12 hours before you can use them again. Can you tell me anymore about your medication? I will be looking it up, but stuff like any side effects, etc.?? Thanks.

     
    Old 05-07-2014, 09:32 AM   #6
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    Re: newbie to neuropathy

    Thanks Cocoa, how do you use the voltaren and lidocaine together? I would love to be able to use something at work that doesn't interfere with my working ability but helps with the pain. My hands and feet hurt so bad today, I don't even feel like walking. Fortunately for me there is no one in the micro lab with me today. The ibuprofen doesn't seem to do anything.

     
    Old 05-07-2014, 09:40 AM   #7
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    Re: newbie to neuropathy

    Lyrica is similar to gabapentin. However, gabapentin made me itch and Lyrica does not. The main thing with lyrica is that you have to stick it out for two weeks to get over the side effects which mainly for me was sleepiness and headaches. Also, with Lyrica you will have to find the correct amount so it takes a little while to figure that out. Right now I take 400mg a day but I started at 75mg a day. The morning dose doesn't make me sleepy but the night dose knocks me out and I usually sleep good. Also, there is the weight gain with Lyrica coupled along with the fact that you might not be able exercise as normal. Allie

     
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    Old 05-07-2014, 09:47 AM   #8
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    Re: newbie to neuropathy

    I'm sorry I new at replying back, learning quickly though. Cocoa, I hope you saw my reply question about Voltaren and Lidocaine...

     
    Old 05-07-2014, 10:54 AM   #9
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    Re: newbie to neuropathy

    its a lidocaine hydrochlorine jelly and the voltaren is a gel. i apply the lidocaine first because it seems to numb it then i apply the voltaren. if you can while at work use the frozen peas to help with the burning they stay cold longer than you think. i know what you mean about your feet and working i work too and at the end of the day i can bearly walk or stand because of the pain. the name for the Keppra is (levetracetam). i also tried Lamotrine, Amitriptline, Nortriptyline, cymbalta and Tegratol(carbamazepine) for the nerve pan. you will have some trial and error before you find one that work iam still looking so be strong you can do it i know you can and good luck
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    Old 05-07-2014, 11:59 AM   #10
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    Re: newbie to neuropathy

    Thanks Cocoa, I appreciate it. It's been a tough, painful day, work is a distraction for me but the pain is always there and it's very hard sometimes to deal with it. Sometimes I just want to climb in bed and stay there and sleep, that's the only time I don't feel anything.
    I will continue to post on my progress and am very grateful for some support and dialogue with people who know exactly what I'm feeling.

     
    Old 05-07-2014, 12:01 PM   #11
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    Re: newbie to neuropathy

    Thanks Cocoa, I appreciate it. It's been a tough, painful day, work is a distraction for me but the pain is always there and it's very hard sometimes to deal with it. Sometimes I just want to climb in bed and stay there and sleep, that's the only time I don't feel anything.
    I will continue to post on my progress and am very grateful for some support and dialogue with people who know exactly what I'm feeling.

     
    Old 05-07-2014, 05:03 PM   #12
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    Re: newbie to neuropathy

    Does the Voltaren make you dizzy? I'm trying it for the first time and I'm a little dizzy.

     
    Old 05-08-2014, 07:53 AM   #13
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    Re: newbie to neuropathy

    Sorry to be just now answering I dont have a computer at home so just use when at work. No I did not have any dizzyness but i believe that is one of the side affects. How are thing going today
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    Last edited by cocoa100; 05-08-2014 at 07:54 AM.

     
    Old 05-08-2014, 02:12 PM   #14
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    Re: newbie to neuropathy

    Quote:
    Originally Posted by cocoa100 View Post
    Sorry to be just now answering I dont have a computer at home so just use when at work. No I did not have any dizzyness but i believe that is one of the side affects. How are thing going today
    Actually yes, the voltaren is working and helping with my pain. I would say from a 10 to a 4/5. In so grateful! I can take it to work and the 2nd and 3rd time I applied it I didn't get dizzy, not sure what happened the first time, weird. I went out today and got more to have on hand. It doesn't eliminate the pain but definitely reduces it! I'm glad for some relief. My feet and hands still have breakthrough pain but forearms and calves better. I still try to stay off my feet as much as I can at work though, it's tough working in a lab where you have to stand up all day. I start this new job on Monday, we will see how that goes! I don't want them to know there is anything wrong with me, you know.

    Thanks for asking!

     
    Old 05-09-2014, 07:19 AM   #15
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    Re: newbie to neuropathy

    good to hear that its helping. it will not stop the pain just reduces it. Good luck on your new job and have great weekend. keep us updated on how things go
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