[Hope15]

Sorry....just had to vent, and as understanding as my family is, only those here can truly understand what this pain feels like. Last night I had such intense burning from my neck all the way down my back and all across my stomach and waist. My whole trunk was on fire. My legs and feet didn't really burn, but hurt like hell with all of those fun pains that are often described here. Shooting, cramping, stabbing, stinging, you name it. I just finally broke down and balled like a baby. (I'm a crier anyway). This morning? the pain level is quite low. Why, why does this happen?

One thing that I have noticed when I am in a great deal of pain is my face often gets very flushed. I thought it could be hormones, or perhaps my rocacea, I don't know, but it happens a lot.

Still waiting for my insurance to kick in so I can go to the pain doctor, find another neurologist and get a skin punch biopsy. I don't want everything to stop here. I keep going to the stickys to read the positive posts, and I try to listen to the words that the last neurologist said to me. Though he could not find what was wrong with me, he did say that he has had patients who have improved and healed.

Well, I'm just babbling here, just wanted to vent. Thanks for the sympathetic ear....

[Colin Street]

Certainly sympathy, indeed empathy, from me. Sometimes I wish I was a crier! It's the unpredictability that particularly gets me, especially the stabbing ones (I call them hotwire pains, like a wire beneath the skin suddenly heated). The only, and rather tenuous, causal link I think I can identify is that the worst happens after exercise, but how long afterwards is variable. For me too the best time is in the morning.

Good luck with getting to see the pain doctor/neurologist, and hopefully a better diagnosis.

[Hope15]

Originally Posted by Colin Street

Certainly sympathy, indeed empathy, from me. Sometimes I wish I was a crier! It's the unpredictability that particularly gets me, especially the stabbing ones (I call them hotwire pains, like a wire beneath the skin suddenly heated). The only, and rather tenuous, causal link I think I can identify is that the worst happens after exercise, but how long afterwards is variable. For me too the best time is in the morning.

Good luck with getting to see the pain doctor/neurologist, and hopefully a better diagnosis.

Thanks Colin, and yes the hot wire pains are all too familiar...

[BlueMajo]

(((((Hope)))))

I understand you clearly as I have feel the same hell sensation more than once.... I have to scream everytime that pain comes as it comes like in waves you know... ouch....

I have to say lyrica helped me... I stopped it... then Vit B helped a lot too... had to stop it as well... now Im only under vit D and havent felt that fire sensation over the last weeks... Hopefully it will last longer...

Take care.... I have discovered also that cooling my body helps me feel better when the burning comes...

[Hope15]

Originally Posted by BlueMajo

(((((Hope)))))

I understand you clearly as I have feel the same hell sensation more than once.... I have to scream everytime that pain comes as it comes like in waves you know... ouch....

I have to say lyrica helped me... I stopped it... then Vit B helped a lot too... had to stop it as well... now Im only under vit D and havent felt that fire sensation over the last weeks... Hopefully it will last longer...

Take care.... I have discovered also that cooling my body helps me feel better when the burning comes...

Thanks Blue. That's wonderful that you haven't felt the burning in a couple of weeks. I am going to keep my fingers crossed that your relief will last as long as possible. It also gives the rest of us hope that maybe we can eventually achieve some longer term relief. My gabapentin is basically doing nothing for me, so when I go to the pain doctor, I hope to try something else. I try and take the recommended supplements faithfully and to take care of myself the best I can. I wish I could exercise more, it just hurts a lot.

A cool shower makes me feel a bit better. Anything cooler does....

[COLBEYMOORE]

My neuropathy is in my feet and legs..so I have been there crying hysterically tired of the endless days and nights of pain and no break from it..it is enough to drive one crazy.
On the nights of the burning believe it or not I use Icy Hot and my husband massages my feet with the cream over and over again..then the burning sensation goes away.

I take gabapentin (generic neurontin) and vitamin B and now loratab after visiting a pain management center. My neurologist would not prescribe a narcotic for pain so I went else where. The break I get thanks to the loratab makes it bearable for me and I am in a better mood when I am pain free. My attitude is better and I am not as depressed. Now how long I will be on the loratab I dont know but right now it works and I take one tablet every 6 hours.

I do believe there are certain triggers that will make your neuropathy flare up for me it is my blood sugars high..lack of vitamin b in my system

[Hope15]

Originally Posted by COLBEYMOORE

My neuropathy is in my feet and legs..so I have been there crying hysterically tired of the endless days and nights of pain and no break from it..it is enough to drive one crazy.
On the nights of the burning believe it or not I use Icy Hot and my husband massages my feet with the cream over and over again..then the burning sensation goes away.

I take gabapentin (generic neurontin) and vitamin B and now loratab after visiting a pain magement center. My neurologist would not prescribe a narcotic for pain so I went else where. The break I get thanks to the loratab makes it bearable for me and I am in a better mood when I am pain free. My attitude is better and I am not as depressed. Now how long I will be on the loratab I dont know but right now it works and I take one tablet every 6 hours.

I do believe there are certain triggers that will make your neuropathy flare up for me it is my blood sugars high..lack of vitamin b in my system

Colbey, I can certainly understand. I've got my hubby massaging my feet and my legs as well. On my back, which sometimes can be my worse area, I sometimes use a cooling homeopathic gel called Calendula gel. It doesn't last as long, but it sure feels nice going on. That's another thing, my husband. He works so hard during the day and comes home often to a wife in severe and chronic pain. It makes me feel terrible. He's a very active guy, and we used to do so much together, like hiking, etc. But he never complains, and he's so loving as are my sons. Thank god for my family, or I don't know what I would do.

As far as setting the pain off, I've noticed weather can also do it for me....

[Colin Street]

I meant to mention that redness of skin or mottling has been recognised as a symptom of neuropathic pain. See for example the LANSS Pain Scale Questionnaire at http://www.neurocentre.com/slanss.php

[daniella]

I am sorry you are sturggling. I can relate as last night/early morning I was in crying pain. Sometimes I can't find a connection and sometimes I can with increased pain. I have very little luck with meds and no one can touch me so basically it is about time and waiting for it to pass. Hope I hope you find a medication or treatment that helps you.

[Hope15]

Originally Posted by daniella

I am sorry you are sturggling. I can relate as last night/early morning I was in crying pain. Sometimes I can't find a connection and sometimes I can with increased pain. I have very little luck with meds and no one can touch me so basically it is about time and waiting for it to pass. Hope I hope you find a medication or treatment that helps you.

Thanks daniella, I know so many on this forum including you knows what this feels like. That's what I like about this forum, we can discuss the technical aspect of this disease, meds, statistics, articles, etc., but we can also come together and relate about the personal side of this disease. How it affects us emotionally and those around us. Once in awhile I have to vent about that.

daniella, I also hope for you that things improve as well. I will think positive thoughts for you.