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Old 04-25-2015, 06:32 PM #1
canagirl canagirl is offline
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Default I can't take it anymore...

The nortriptiline is working now. I can say that my symptoms feel damped but I still have a lot of pain, entire body throbbing, entire body feels numb and heavy when lying down, even my gums and roof of mouth throb and burn. I still can't cope with this even though the pain has been damped down. I know none of u can help me... I just don't know what to do. I can't do this anymore.... There is no piece in my life. I can't lie down that's when everything is at it's worst but sitting or moving doesn't help much. I'm so down, done, hopeless.... I don't want this anymore, I can't handle it anymore
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Old 04-25-2015, 06:38 PM #2
northerngal northerngal is offline
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Been thinking of you, and was hoping your pain was getting better. Sorry to hear you are still dealing with this and hope some relief is found for you soon
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Old 04-25-2015, 06:51 PM #3
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I keep thinking there's something the docs are missing. How can this progress so quickly? How can it keep moving, spreading and increasing in pain intensity. How can I keep having new symtpoms? I feel like it's impossible . Mostly from what I have read people have slow progression of symptoms over time. How is it possible to have every inch affected? When will this stop? I have tried to be strong or the last few days like u guys have said but it's just not working. I'm scaref
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Old 04-25-2015, 06:54 PM #4
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Is it only sfn that causes the stinging and sunburn feeling? Or does large fiber sensory neuropathy have this symptom too?
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Old 04-25-2015, 07:03 PM #5
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What happens when all ur small fibers are gone? Somebody on here has said their fibers are all gone in their feet. What does that mean for u ? No feeling, can u walk? I'm scared if mine is all over that I will soon be completly disabled by this time next year ( I'm progressing rapidly). Can this happen? What is the outcome for most neuropathy sufferers? Honestly. There's no way I'm healing from this so i need to know what to expect. I need to know what to prepare for
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Old 04-25-2015, 08:02 PM #6
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Even as dark as everything seems right now DON'T give up on healing. I would never tell you what you are going through isn't hard but I will tell you there is still hope. Your nervous system is in overdrive now and might not always be. Did you start the gabapentin? That will help calm things but it will need time and possible dose increases. I don't know if you would lose so many small fibers so quickly but I do know an overstimulated nervouse system can wreck all kinds of havoc.

I went through an overload period after my initial nerve injury and remember well the misery, pain, buzzing, twitching, stinging and anxiety. There were many times I felt like giving up and could not see a future for myself. What a stupid waste that would've been. I look back on those days and thank God for giving me the strength not to give in because I am better than I was at the beginning and I am better enough that it is livable. It took time and more patience than I wanted to give but that paid off. My son and I laugh together daily, deep side splitting laughs I could not have envisioned a year ago. His well-being is what I held onto during the storm when I could only look ahead in five minute increments.

Find what it is that you can hold onto and HOLD FAST! It is worth it. You are worth it.

I am sending extra Healing Love, Littlepaw
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Old 04-25-2015, 11:25 PM #7
St George 2013 St George 2013 is offline
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Default Hey canagirl....I'm the 'no small fibers left' lady :)

Quote:
Originally Posted by canagirl View Post
What happens when all ur small fibers are gone? Somebody on here has said their fibers are all gone in their feet. What does that mean for u ? No feeling, can u walk? I'm scared if mine is all over that I will soon be completly disabled by this time next year ( I'm progressing rapidly). Can this happen? What is the outcome for most neuropathy sufferers? Honestly. There's no way I'm healing from this so i need to know what to expect. I need to know what to prepare for
First.......take a deep breath and slowly read what I've written to you. Maybe more than once so you can let the words soak in ok ?

Are you using both the meds as your dr instructed you to ? Just want to make sure. I know you said when you go back he will discuss putting you on gabapentin. As a previous poster said, please make sure he writes down exactly how and when to take your gabapentin. I was so upset when I started it I would not have remembered how he told me to take it if it was not written down.

As for my biopsy, I mentioned that I have no A or C Fibers left in my feet so therefore I have no nerves to regenerate. That leaves me with just pain to deal with. I can walk but the more I walk the more I'm going to hurt. I don't drive unless I absolutely have to because the vibration of the car sets my feet and hands off. I ride in the backseat with my feet up on a pillow to lessen the vibrations as much as possible.

Nerves take a very long time to heal. Once you start the gabapentin and some stronger pain relief I hope you can see a difference.

The skin punch biopsy will help to determine exactly where you are. I only know of 2 or 3 people on here like me that actually have no fibers left. So your odds of having nerve fibers left and having them regenerate over time is very good.

You say there is no way you are healing from this but you don't know that. You have to give the meds a chance to work. It's not instant.

My symptoms came on suddenly but I know why.......being pre-diabetic and having 6 rounds of chemo (taxol-carbo). It started almost exactly 1 month after chemo ended. I could barely walk due to the pain and was in tears constantly.

I'm sitting here writing this to you right now and I want to scream because the whole outside of my left foot is in severe pain all the way up to my knee. My right hand keeps going numb to the point it hurts and my whole body aches.

You CAN get through this. You are stronger than you think. Reach deep down and find your inner warrior and fight this thing. You are on the right track now that you have seen your dr and it seems as if he's going to work on this with you.

We're right here for you and with you in this.

Debi from Georgia
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Old 04-26-2015, 04:20 PM #8
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Default Acupressure..

Quote:
Originally Posted by canagirl View Post
The nortriptiline is working now. I can say that my symptoms feel damped but I still have a lot of pain, entire body throbbing, entire body feels numb and heavy when lying down, even my gums and roof of mouth throb and burn. I still can't cope with this even though the pain has been damped down. I know none of u can help me... I just don't know what to do. I can't do this anymore.... There is no piece in my life. I can't lie down that's when everything is at it's worst but sitting or moving doesn't help much. I'm so down, done, hopeless.... I don't want this anymore, I can't handle it anymore
Have you tried acupressure? It is amazing..really works..It has helped me in so many ways..i am hooked on it.
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