Burning sensations

[OperaMBA]

I have intermittently had burning sensations, but the one that is ALWAYS in the same exact place and has been for 7 years is just above my forehead and just to the left of center about the size of a quarter.

What has y'alls experience been with these sensations?

Also, every night when I lay down in bed (notice I didn't say go to sleep....  :-)  ) my core back muscles, thighs and arm muscles "pulse" continually back and forth.   It is imperceptible to the touch, but my nerves feel it for sure.   It beats at a constant rate of several beats per second and I can hear the pulsing in my ears.

????

Richard
OperaMBA

[wonko]

It burns, it burns!

Hi,

I've had issues similar to what you state.  Of course, I have no diagnosis so I can only commiserate.

For me, what started out as mild tingling in my face, hands, and feet gradually "evolved" into burning and some mild pains.  

The face burning has been the most persistent.  It started with a feeling of sunburn on my cheeks, right where footballers put that black stuff.  It has gotten so bad in the past that my face, down to mid-chest, would all turn bright red.  This would last for hours at a time.

I can also really relate to the "weirdness happens when I lie down" problem.  For me, all of my sensory nonsense gets stronger and spreads from my extemeties into my core when I lie down.  I don't think I've had the pulsing muscle movements you describe, but I do get some small twitches in my legs and sometimes arms.

I sometimes have ear pain, and when I lie down, they can ring and/or I can hear my pulse.

Question for you (sorry if it's in another post):

Are you on any medications?  I've taken neurontin and am now on lyrica and medications such as these can help.  

Not having a diagnosis doe not mean you should have to live with all of these weird and discomforting symptoms.  Medications can be tough, in that finding a favorable balance between therapeutic benefits and ugly side effects can be elusive.  But if you hare bothered, you should consider it.  

Have you talked to your doctors about symptom treatment?

Good luck!

[OperaMBA]

I, too, have no Dx as well.  

Not worked with the doc on anything neurontin wise, I discussed it with N1, the sympathetic one, but N3, who is about to be kicked to the curb, is only pathetic, he lost the sym somewhere - perhaps at med school.

When I convince N4, the MS Specialist who is head of the MS Center at one of the big hospital chains here in Charlotte, I will discuss all of these types of options.

Thanks for the suggestions and good luck with the whacky sensations!

Richard
OperaMBA

[goofysmom1]

Hi Opera,
I have the burning/tingling sensation only on my feet.  Specifically on the big bone on the inside of the foot, below the big toe. (where bunions form - only I don't have bunions!)  

I also get burning on the outer edges of my heels.  This began over a year ago - and it is very intermittent.  I haven't been "connecting the dots" between my symptoms until recently - so I am just now starting to look back at some symptoms over the last 2 or 3 years - that could possibly all be related.

Some of the tingling symptoms in my legs are worse at night - so I can sympathize with you on that!

Hang in there!

Chrisy
(yet another person waiting for a diagnosis)

[OperaMBA]

Y'all hang in there too, fellow limbolanders!

Richard
OperaMBA

[Terrie2008]

I have no diagnosis so I cant really help, but I am interested to find someone  who has found out why and what has been done for them.

I get the burning soreness (like sun burnt on my forearm) I put it down to all the nerve endings going mad.

[wonko]

(And everyone else, too)

We've had threads on the forum before devoted to discussions about how neuropathic (synonymous with "neurogenic") pain is caused by a different physical mechanism, and therefore responds to different medication.

So if you suffer neuropathic pain, you can't just take and advil or aspirin.  Conversely, you can't take a med like neurontin for a pulled muscle.

That is why I'd urge you to discuss it with your doctors.  I can REALLY understand that while burning and tingles are not dangerous or emergencies, they cause constant psychological distress.  It is like getting constant (though small) messages from your body to your brain that something is WRONG.

So while some of our favorite nurros may dismiss these complaints, I think it can really affect your qualitiy of life to get these paresthesias treated.  

For me, I am "lucky" in that after months (5, actually) of returning to my PCP, she is finally willing to work with me and has rx-ed prednisone, neurontin, and now lyrica.  So I don't even need to bother with neuros to get help.  

OperaMan, I too have seen several neuros.  I sometimes am worried people will think I am nuts for pursuing so many doctors.  But it's not like I have options, ya know?

Now, my symptoms are just starting to come under control again.  But I'd still really like to know why I need to be taking medication to be functional at my work.  

Always nice in one way, sad in another, to "meet" someone else in the same boat.

Good luck guys, and use the "search" feature to look up old threads on neuropathic pain if you want to read more.

~W

[wonko]

addendum:

I should also mention that (I think Quix?) wrote a health page on paresthesias, so be sure to check that out.

Also, I'm not sure of my above wording where I say that meds "treat" paresthesias.  

I should make more clear that in the case of neurontin and lyrica, I think they can relieve the symptoms, but do not treat/cure/change the underlying problem.  Of course, us limbo folk don't even know what the heck the problem is, but treating the symptoms can still help an awful lot.

Again good luck to all.

[OperaMBA]

Good info, I'll check out Quix's page quixly!   :-)

Richard
OperaMBA

[Tahiri_Veila]

I think this is a common symptom.  I got a burning sensation in my back at the start of all of this.  I still get is sometimes.  About 2 months ago whenever I would lay down to rest it felt like my whole body was twitching or something but you couldn't see it or feel it.  It is not really fun.  Sometimes it feels like someone is shaking the bed underneath you.  It is not really fun.  But I can tell you that sometimes neurontin helps.
Tahiri

[doublevision1]

I was dx'ed a year ago and have had all kinds of weird sensory things going on.  With respect to burning, I have had that feeling in my left hand since my least relapse in March.  My palm feels like it's burning, my fingers feel swollen but they are not, my finger tips are numb, my whole hand feels tight like I'm wearing a glove that's too small, the back of my hand feels supersensitive, and the underside of my forearm feels like one big abrasion on the skin.

I'm on 2700mg/day of Neurontin.  I tried going higher with no additional effect.  I tried going lower and the sensations were a lot worse.  I recently added 50mg/day of amitriptyline and this provides some additional relief in that the pain does not wake me so early in the morning anymore.

For some, one med is is sufficient, while for others, a combo of meds are needed.  It is so individual and it takes some time to experiment and find the best approach.

db

ps: I am curious about your nickname.  Are you opera singer?  Bass, baritone or tenor?  I love opera!  I have a good friend who is a soprano (singer, not mobster) here in Canada and love to see her perform.

[OperaMBA]

Thanks for the medicine info.   I will pepper the neuro with all kinds of questions on Monday.

Opera, hmm.   I sing fairly well, and I am definitely a tenor, but I would never endeavor to fill the shoes of an opera singer!

No, I am an opera fanatic though!  In about 2000, I was listening to a series that I got from the teaching company, basically a college course called "How to understand and appreciate great music" by Professor Robert Greenberg.   The course traces western music from around 800 through around 1930....   Classical music mostly...   From this, they had several lectures on operas by Mozart, Gluck and Verdi....

I was hooked.   I have had season tickets to the opera here in North Carolina since then.   It is about all that I listen to!

Thus, the first part of my moniker.

[Deb61]

Very interesting combo of interests you have--opera and sports.  I think that is awesome!  My husband's a professional jazz musician, but we love listening to the classics.  

I have to say ditto to a lot of things you've described.  I've had many symptoms similar yours.  I hear and see weird things.  I get clicking in my ears that sounds like Morse code and they constantly ring.  I will even get a louder ring when I move my eyes to gave from side to side--which is one of the weirdest symptom!  I used to hear my whoosh, whoosh, whoosh in time with my heartbeat in my ears.  I don't have this presently, but will get this when my blood pressure is high.  

My vision problems is for another thread, but there's weird things going on with that, too.

I do have a facial parathesias--and I have a lot of them.  The most constant ones are the wet feeling I have from the corner of my mouth down to my chin.  I'm constantly wiping at my chin and mouth to dry something that isn't there.  Plus, I get what feels like bugs crawling in my hair.  Also, there's the weird feeling like I'm extremely cold or have been brushed by a feather on one side of my face to the back the scalp on my right side.  

I do have a pulsing sensation that crops up from time to time.  I notice this just before my tremors become noticeable to everyone.  You can't see it at first, but give a little time or a push from exhaustion or stress, the pulsing feeling turns into full-blown visible  tremors.

I hope you get some answers, soon.  It took a while for me, but I finally have a diagnosis (dx in Feb. 2008).  Before, I was sent in the wrong direction with rheumatologists and was on a not-so-fun merry-go-round, so I can really relate to your frustrations.  Hang in there, OperaMBA!

Deb    

[OperaMBA]

Thanks Deb for the words of encouragement!

I'm hanging!

I'm also a closet economist interested in macroeconomics and globalization.  I dabble in lots of different things!

Richard
OperaMBA