Horrible night. :-(
 

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....

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...:(

(((((Hope)))))

I understand you clearly as I have feel the same hell sensation more than once.... :mad: 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... :rolleyes: Hopefully it will last longer...

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

:hug:

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....

:hug:

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

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....

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

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. :hug:

I can relate to your pain(s)
 

Hang on in there. I rub down with Aspercreame. I think it gets better after awhile or we get used to it. I've been where you are for about a year. Taken all kinds of meds, with little or no relief. I turn on my mp3 player to distract myself.

And you are correct. Only those who have experienced the pain and discomfort truly understand. Good luck to you.

I would NOT use OTC pain creams over large areas of the body, or frequently or with heat applied.

A young woman athlete died overusing Ben Gay, last year.

Funny you should mention that. Sometimes I live with my mp3 player on. I have always loved music, everything from R and B soul, to classical. I've always got some kind of music on and it does help distract me with the pain at times. Wishing you the best also....

I tried a cream recently, active ingrediant Benzocaine, and there was a warning on the packet not to use it for more than a week or over large areas of the body. Not that I'm tempted to do so, since alhough it seemed to give some relief for an hour or so, then pain got worse for the rest of the day. Though I'm not saying that the cream was definitely the cause of either; as all with NeP know, cause and effect is to say the least, problematic.

Distraction techniques and minimising exercise are my only real defences - I've tried pretty well all the standard drugs.

My pain doctor wrote me an rx for some anti inflammatory cream today that you rub a small amount of on your area which for me will not be happening but for others I will look at the name and try to repost. My pain doctor and Mrs D may know more and it is very expensive but it is some compund that has neurnotin and some other meds in a creamform that they make up for a person. Have you heard of this? I don't have rx coverage and for me to sensitive to rub cream on my area but he said it could be like 1000 a month if he was correct
As for music I too love it to help me calm down. I watch on the computer music videos. I like watching people dance too to those hip hop songs. Amazing how they move.
To the original poster I like your attitude. I have had baically 2 full nights of lack of sleep from a bad procedure that increased pain but today I finally have slight break but still aka 3:30 am and up. My body is so out of whack but I agree holding to hope and support like on here truly helps

Compounded creams like this often contain various ingredients.
They may have ketamine, clonidine, elavil, ketorlac,
or even gabapentin, in various concentrations and mixtures in a special transdermal gel (this is different from most "creams").

That was what my pain doctor was talking about a cram with neurontin and another mixture. He said some like it better then oral but it is very expensive and for me I can't tolerate rubbing something on me anyhow but for others. The gel he prescribed in addition to oral meds which I am not going to use at this time is diclofenac sodium that you rub on the sore area

I had an oil type compound with neurotin, lidocane and something else made up for me, it was 40.00. I don't know that it worked for me but my husband uses it on his wrists for his rhuematoid, a little bit goes a long way. Running cold water over my feet during a bad flare is still the only "topical" that works for me.

Diclofenac is Voltaren in topical form. It is an NSAID like naproxen and ibuprofen. It is also in a patch called Flector.

Typically the transdermal gels for topical use have either dicolfenac or ketorlac in them because these two NSAIDs are more fat soluble and will cross the skin barrier more easily.
Ketorlac is more potent of the two.

Hang in there Hope
 

I used to feel like I was doused with petrol and lit a flame from head to toe. Then ofcourse the bee sting pain too. No it's not fun. I would just take panadol as needed and also take the Alka Seltzer asperin too. Not the best solution but better than excruciating body wide pain. I hope it isn't this bad for you every day.

Hang in there.

Aussie, I think you described the pain exactly. It does often feel like someone poured gasoline (or petrol) on ones body and lit a match. And the bee stings, yes. I also told my husband that it sometimes feels like someone pushed a thick rose bush thorn into my skin. It's funny, since coming to the forum, I have read the different descriptions on what exactly this pain feels like, and people have described it in all different ways. In the long run however, we are all feeling so much of the same thing. Thanks for the best wishes. It sounds as if you are in a better place now?