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Trigeminal Neuralgia Message Board
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Old 05-14-2008, 07:14 PM   #1
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Question My neuralgia = constant pins, needles & burn. Anyone else?

Burning strong now for over 4 years @ sites on the body "where the sun doesn't shine." Very depressing. Many meds did nothing, four injections made it worse....just hanging in there for the time being. Doc had a compounded cream made up for me but it appears not to be touching the increased burn. Feels like needles, hot match heads, etc. in the areas in which the pain lives. The burn moves around a lot---each area getting its own "brand" of torture. I wish I was exaggerating but I'm not. Cymbalta helps a tiny bit. Is anyone else being held hostage by post-herpetic neuralgia? Please write even it your neuralgia isn't from this origin....maybe we'll have something in common. Thanks for reading this. P.S. I'm new to this site so I may be posting in the wrong area... HopeW

 
Old 05-14-2008, 07:36 PM   #2
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

Welcome Hope....I think you are definitly in the right place, because it certainly sounds like you have chronic pain issues. I don't have neuralgia, but I wanted to say hello and welcome to the board. Hopefully there will be someone here who shares this condition and the horrid pain that comes with it.

I am glad you joined us, though not about why you had the need to. Please post often. It is so nice to have new opinions and advice here. This is a great group of people and the support is amazing.

If you can, let us know what medications you have taken. There may be different ones that others here have had success with.

I hope we hear from you often. CMP/MM

 
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Old 05-14-2008, 09:35 PM   #3
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

Hi and welcome. I am so sorry you are experiencing this. I have alot of nerve pain particular after sleeping and near bedtime for some reason. I sometimes just want to jump off a cliff. I could not imagine dealing with it 24/7.

Do you know what causes this pain and do you have the pain in any particular area?

 
Old 05-15-2008, 04:18 AM   #4
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

Hi Hope and Welcome to the boards! I'm so sorry to hear of what you are going through, but I just wanted you to know you are not alone out there.

I also want to let you know that your post has given me a little hope. I've been at the end of my rope for the last week or so. I've been in constant pain, with that burning and tingling. And lately it seems it is getting worse. It starts in my butt, and goes to my great toe on my left foot and the two toes next to it. Mine was damaged in two different surgeries that I've had. You can see in my siggy what they were. Most here know my plight, but I've not been posting much lately because of extreme pain, and almost sheer desperation.

I didn't know the condition was called "NEURALGIA". You've given me something to talk further with my PM doc about when I see him on the 27th of this month, and ask him if this is what I have or not, and what are treatment options for it. Little by little I've been decreasing my meds, but I think this last decrease on the 29th of April from 30mg of Avinza to 20mg of Kadian, for whatever reason, has done me in. What I don't know is whether it has been THIS bad all along, and the previous meds were just helping so much more with the pain, or if it is getting worse?? I just can't even wrap my mind around "worse" right now.

I teach College, and now that the Semester is officially over, I have been trying to focus on my two months off for the Summer. My contract officially ends May 31st. Tonight is our Commencement Ceremony, and I'm so bummed. I have 9 graduates that will "walk", and for the first time in 12 years, I get to 'participate' in the ceremony like normal faculty does and "march" with them instead of Interpreting the ceremony. Well, go figure, that at present I can barely walk!!

My hubbs has also decided to surprise me with a night out, and overnight stay at a local casino, and I'm just not all that thrilled about it. The ceremony doesn't even start until 7 pm, and with 1000 grads walking it will be almost 10 before we get to leave the colisieum. That's three hours of sitting, with pain out the roof. My pain is sitting at 7-8 right now.

I'm sorry I made this about me, I just wanted to let you know that you are not alone. You have given me HOPE, like I said, and I'm so appreciative of that!! I don't know if you are a prayerful kind of girl, but if you don't mind, I will add you to my list. Right now prayer is about all that is keeping me going until I can make it to June first. I'm just so depressed right now, and with the prospect of Summer comming, and me feeling this way, after doing so well, frankly, it's quite a setback.

Just a question for you Hope, do you have any reflexes at all?? I have none, ZERO, nada. Not at the knee, ankle, toes, foot, NONE anywhere. Haven't had any since my 2 level fusion on March 9, 2007. Yet, every month he tests my reflexes, as if they have miraculously returned since last visit. It's very frustrating.

Take care Hope. And thank you for giving me something to talk with my doc about.

Respectfully,

~!~ Becky ~!~
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Last edited by SpinalMalady; 05-15-2008 at 04:19 AM.

 
Old 05-15-2008, 05:29 AM   #5
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

<<<<<<<<<<<<<<<<<<HOPE>>>>>>>>>>>>>>>>

Welcome to the boards!!!

I just wanted to chime in with everyone else to say hello

And welcome...

I am sorry to hear of the pain that your having. I certainly hope that the doctors can figure out something to help you with the pain. Like cmpgrl said if you let us know what type of meds your on we may be able to help a little more.

We all have pain and it does not really matter what the cause is...meaning that we all experience the same emotions. We all have fears etc.

This board is a great place full of loving people who truly do care. Hang in there and stick around. Ask lots of questions and get to know us.

Again welcome to the meeting place...

Chrissy

Last edited by skych; 05-15-2008 at 05:29 AM.

 
Old 05-15-2008, 09:10 AM   #6
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

Hi Hope...I totally agree and second what cmpgirl has written in her posting to you.

I myself have only just joined and already, this feels and reads like a pretty special place. Something hear I've been missing for 5 years now.

Anyway, with regards to Medications. My Doc and Specialists have me on a cocktail at present, don't know if this means anything but worth asking your Doc, seems to be taking the edge off, (Pendine - Gabapentin) I know they are also using this with Transverse Myelitis patients for those symptoms.

Catch you round.

 
Old 05-15-2008, 07:43 PM   #7
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Re: My neuralgia = constant pins, needles & burn. Anyone else?

Hi Hope! Welcome. I don't post a lot, but I have read and found loads of strength from all these posters! You're in good hands.

It seems like all of my posts lately have been about Spinal Cord Stimulators, but I did want to mention it again...to you. I don't know if you are a candidate or not, but it has been used with lots of neuralgia patients. It also can "cover" all sorts of areas where the sun never shines. There are many success stories with the SCS. It might be worth asking about. There are also many posts here about themm and lots of info online.

Anyway, good luck. Nerve pain sucks and I wish none of us had to go through it. We're all here for you.

Stephanie

 
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