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

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

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

Is it only sfn that causes the stinging and sunburn feeling? Or does large fiber sensory neuropathy have this symptom too?

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

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 :grouphug:

Is the Tylenol 3 helping at all? It really isn't a very strong pain medicine...compared to oxycodone/hydrocodone, but it is a narcotic and should help take the edge off some.

Did you doctor offer any new testing or other suggestions other than give you pain meds for 5 days? Is there any way you can get your skin biopsy moved up from the end of May to something much sooner?

I would make sure you get instructions to try the Gabapentin when you go back to the doctor in a few days. And have him give you details to increase that dose as you need.

Hey canagirl....I'm the 'no small fibers left' lady :)
 

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

[QUOTE=en bloc;1138348]Is the Tylenol 3 helping at all? It really isn't a very strong pain medicine...compared to oxycodone/hydrocodone, but it is a narcotic and should help take the edge off some.

Tylenol 3 did nothing. I thought maybe it was doing a tiny but I take any lady night jûst to see the diff and there was none. I think the nortriptyline was just kicking in.

I think my case is a bit diff than others here. I myst have cns involvement too. My involuntary movements are bècoming very frequent right now. My twitching is ramping up and is crazy lately 500+ times per munute ( all over and at same time). Pins and needles is also very intense the last couple days and does not fade

[QUOTE=canagirl;1138385]Dont give up Canagirl i remember that when my symptomes started i had i had my moments dispare.
My symptomes where surtanly not so severe as your ones but i had stiff hand and feet.
Pain in my feet hands when i woke up in the morning,stiffens like wont believe.
Burning pain pain in my nerve endings very similar to a carpal/tarsaltunnel syndrome.
The nerves in my feet were swollen and it felt i was walking on electricity cables.

In both my hand i had tingling while driving my car and my left hand was contracted like a claw after driving.

I had unbelievable pain in my feet the nerves in my feet got very sensitive.
Tingling and paresthesia when walking and when i was sitting down and the tingling when't sometimes on for more then 2 hours after a bit walking.

My symptoms started slow but got severe over the years.

But i can tell now that your body is healing even if you feel your nerves are in a state of inflammation.

For me the burning is gone
Tingling and paresthesia are gone
Pain is gone
What stays at this moment is some numbness and lets see if the numbness stays or will also begone after some years.

When i am going to the gym i will feel some discomfort in my hands and feet but it is not much.

I feel that because your young you have a very good change of healing because you have more stem cells in your bone marrow that people how are older so a better change of healing.

If you have any questions let me hear them