Burning, how to cope???

[Nerve_Wrecked]

I'm at my wits end and today's only the second day!! For the last...oh heck, I don't know....year, 2 years? I don't really know, but anyway....for the last long time, I've been having this burning sensation on the top of my foot. It comes on suddenly, doesn't last long (several seconds), I apply pressure (confuse the nerves theory) and it goes away. When things are bad, and I'm in a "flare" of whatever's making me ill it has been known to happen 4 or 5 times in a day.

Thankfully, the neurontin put this particular symptom to rest, and I hadn't felt even a twinge of it in a couple of months. Well, now it's back, and it's back with a vengence.

This stupid burning is happening on average of once a minute all day yesterday and now this morning too. It's not quite intense as it was yesterday (so far anyway), but it's definately there. Yesterday I was actually swearing out loud with the pain, today I am just swearing in my head, so far.

What's the best way to cope with this? Ultimately, yesterday I ended up putting an icepack on the top of my foot, and although it didn't stop the burning, it calmed it down to a managable level.
Why is this suddenly flaring up again?
Why is the neurontin not keeping it at bay?
Should I up my dose of neurontin (I take 600mg twice a day now, and have the ok from my family doc to add an extra dose if things get bad)?
Should I wait and see what happens first?

I can't even explain this burning pain, but it reminds me of fireworks. It sort of "erupts" from one area that's about the size of the top of a pen, and then spreads like hot lava to include an area that's about a 2.5 inch circle. Is this normal (for CNS impaired people, not for "normal" people).


Any insight would be appreciated greatly!

Thanks

Christine

[thiagirl]

I get the burning on the back of my shoulders up to my neck. It comes on and lasts for an hour or two, and it happens a few times a day. i used to get it at night and then it would be a constant pain for a few days and then it would just go. I haven't had a problem in months but I got sick last week and was under some stress from my last MRI and that seemed to bring it on again and its been non stop pain . I don't get any relief from it , i just wait it out. I can't take steriods because I am diabetic and they can only give me that if i am in a hospital . I just try to rest when it flares up.

[Nerve_Wrecked]

Thanks Ladies :)

db- I can swear out loud even though I have small children. We have an agreement, there are "adult words" and when the girls are adults they can say them. Works WONDERFULLY for us, neither of our kids swear at all, but we try and keep it to a minimum anyway. But when the need's there, the girls understand that mommy's using "adult words". They are so cute, they are always trying to "kiss it better".

Rena, you need to move here, and take up with my family doc. She would do whatever she could to help you, and with already having a dx, she'd ensure you got proper treatment (man, I love her).

Actually, the pain seems to have backed off some, thankfully. But we'll see how it goes tonight. Evenings/nights are always when symptoms are at their worst for me.  I'm HOPING that the problem was just that, this new medication I started to help with my nausea spells (does anyone else get those, not associated with vertigo?) vertigo related and independant, was blocking the neurontin, since it can deminish the effects of antacids, so now I'm taking them at least 2 hours apart now, and we'll see if that helps.

I know neurontin has a short 1/2 life, but I can't remember to take pills 4 times a day (I tried initially), so I take it twice a day.

Chris
(un-dx)

[doublevision1]

ps: I forgot to add that several sources I've read all state that an increase in sensory symptoms does not necessarily correlate to disease progression.  That reassures me to some degree.

[spastic]

Hi Sweetie, sorry about all the pain, my advice up your dose of Neurontin.  You have the okay from your Dr so I don't see anything wrong with upping the dose.  The burning pain is a hard one to get rid of.  Question, is your foot turning red or salmon pink color?  I ask because I know now the burning pain I have is from the Still's and that it is attacking that particular area.

I hope you get to feeling better soon.

Love,

Ada

[Rena705]

Hey honey...nice to hear from ya stranger but not so nice that you have this horrible pain that I can totally relate to!  I have been told over and over that it is a nerve pain and when I ask what can be causing it I get the typical shoulder shrug.

As you know I have been on Tegretol (still on 900mg/day), Topamax, Neurontin, Lyrica and now Elavil and to be honest with you I don't think any of if has helped!  Once in a while I get a "lull" in the pain but it always returns with a vengeance!  I have the pain mostly in my heels but it travels up the back of the foot and into my big toes and now I am experience a spot on the top of my foot about 1 1/2" above my little toe on the top of my foot and your explanation of a lava flow is perfect!  That is exactly what it is like!

I don't even bother to find anything to help anymore...the funny thing is, when I saw the rheumy last week and explained the nerve pain in my feet and on one calf, she scratched her head and said "that sound more like MS to me...but I am not the neurological specialist so I can't tell you that."  ha ha ha ha  I finally find a DOCTOR that says it sounds like MS but she is not going to state that as fact because she is not a neurologist!  Just my luck eh???

I hope you find some relief for this honey cause I know IT HURTS LIKE H**LL!!!  If I come across and answer, you will be the first to know ok?

Loves ya,

Rena

[doublevision1]

I too am currently dealing with burning sensations.  For me, it is in my left hand and arm.  Mine sounds different than yours, in that mine is a constant burning, and tightness too.  I don't get it off and on like you do.  I imagine yours must be worse to deal with since it sounds more disruptive, coming and going like that so often.  Mine is constant, and I kind of just get used to it.  Also, generally I would think foot pain is worse than arm pain in terms of affecting overall functioning.

Applying pressure works somewhat for me as well.  I'm still using a compression bandage most days, which helps a lot.  Not only does it seems to alleviate the burning, but because my skin is so hypersensitive, it protects the area from the gross feeling I get when anything comes into contact with my skin, ie: the grazing of fabric from a loose sleeve; a blanket; anything.  It seems the lighter the touch, the more disturbing the sensation.

I'm taking Neurontin as well.  I'm on 200mg/200/mg/300mg each day.  It seems to be lessening the pain but definitely doesn't eliminate it.  I tried to wean off it recently and that was a mistake, so I'm back up to this dose.  I would actually like to increase to 300mg per dose.  Initially I was told it was ok to do so, and to gradually increase myself to the dose that provided me with reasonable relief.  Unfortunately I'm on hold with this right now while I wait for my Rebif/liver enzyme issue to get sorted out.

You can go quite high with Neurontin.  I think the standard max daily dose is around 3600mg.  I think it is worth experimenting with, under your doctor's supervision, to get to a point that provides relief.  Maybe give it a few days and if the pain continues or worsens, look into adjusting your dose.  I also understand this med has a short half-life, so maybe 4 doses per day would work better for you.

There are no kids in my house, so when I'm in pain I can swear out loud all I like.  And I do.  Often!  Sometimes even when I'm not in pain.  :)

db