Does anyone get "on fire" feelings?

[Stephiec79]

I seem to ask strange questions, so here's another. Does anyone ever get the feeling like their face is on fire? Like you are so sure that you must have a high fever, but it's normal (97.9 for me)? It seems like this feeling precipitates really bad headaches and I was wondering if any of you Chiarians ever experience it also.

P.S.
I really LOVE being part of this forum...it's like I've found a family who completely gets the things I'm going through...even if we don't 100% understand it ourselves.

[*Stormy*]

I will wake up sometimes at night and my whole body will feel like it's on fire... and then like someone mentioned here, my feet are either freezing or feel like they are burning. Sometimes it does affect my face as well. However, I seem to have a terrible time with allergic reactions and that is when my face starts up and then my eyes swell (though I still have found no cause for it). I was checked and have no confirmed syrinx. I do however have Hashimotos and did read that when you are swinging from hypo to hyper (thyroid) your body can get that burning feeling too...so that can be another possibility.

Carolyn

[jessbee82]

I don't get an 'on fire' feeling in my face but I do get it in my upper abdomen under my breasts to the left.  I usually describe it is a 'burning' or 'gnawing' feeling, and it is always accompanied by a headache

[selmaS]

I think many of us demonstrate the classic MS symptoms...I was tested for that and lupus too and that is how my chiari was finally found.....

It is unfortunate that the drs just do not want to look beyond anxiety and stress most of the time causing us to be miss dx'd for yrs.

And it all comes down to finding the right drs.....

[Jennyfoo]

The only reason we found out so quickly, is that I had classic MS symptoms and already have one inflammatory autoimmune disease, so an MRI was ordered to rule out MS.

I've had symptoms from chiari; mainly headaches, pressure, neck pain for over 10 years

[selmaS]

Some chiarians r lucky and find a dr that looks for everything and finds a reason for the issues they r having...if it only took u a yr, u r still lucky.....

Many of us have dealt with these symptoms all our lives....and tried to find out with no luck...so it sounds like ur medical pros r better than mine : )

[Jennyfoo]

I get the same feeling, usually with a particularly bad HA. It feels like my face and neck are burning up; high fever, but my temp is fine.

It's a weird sx, one I'd not thought to bring up. Thanks for letting me k ow I'm not alone in how crazy my body is. Lol!  

My neuro said it was an incidental finding too, not possibly the cause of my sx. Luckily, I had an Opthamologist annual exam a few weeks after seeing him, and she found that my rt optic nerve is swollen from increased intracranial pressure.  My pcp took it a little more serious after that.

Unfortunately, I was referred to a NS who doesn't seem to think it's important to view her referrals and schedule appts. They've been sitting on my referral for over two weeks and won't make an appt until she goes over my chart. My pcp even asked for an urgent referral too. It's ridiculous!

It made me so mad when I read about a gal going to the Opthamologist, who found optic nerve swelling, referred her to a neuro, and she was booked for surgery less than a month after her Opthamologist appt. She only had headaches as a symptom. I've been having severe neurological symptoms plus extreme headaches since a slip and fall accident resulted in a whiplash last November; almost a year! What the heck is wrong with my medical group? Aasuuuggghhhh!

[selmaS]

From what others have experienced they can come and go as well...the periods that they come and go may change....as with CM...u can have a flare that lasts a few days or a month.

At some point it may appear to be continuous.....as it progresses.......


"selma"

[Stephiec79]

one more question about syrinx, Selma. would the symptoms come and go or would they be continuous?

[Stephiec79]

Checked for a syrinx? HA! My PCP & my current Neuro think I'm neurotic as it is and think that my 4-5mm herniation is "nothing to worry about". Thanks to this forum, I found a neurologist out of Boston. I don't know that she is a Chiari specialist but I did write them a letter telling them what I am looking for specifically in a doctor (the neurology dept is so big that they match you with a doctor). But, even the nurses that I have spoken with sound knowledgeable in chiari...at least it's a place to start!

[Givenstrength]

I have the same thing! My left side of my face mainly! And neck! Feels like hot flashes but just on one side. I was checked last month for syrinx and he said looks like "maybe" a start of one but none confirmed.

[selmaS]

The "fire" feelings can many times be associated with a syrinx....have u been checked for one?

I am sure some of the others with this sensation will pop on and comment.


"selma"

[niki3350]

I dont get a feeling of my face being on fire but I do get that feeling in my feet, more my left than my right and usually at night when im in bed, its that type of feeling when your feet have got to cold on a really cold day then when you get into the heat the burn starts,

Hope this makes sense and yes I love this forum its just great to share and get advice from people that dont think you are mad, when you say things...

[dermarfx]

Hello.......
Yes, and yes.... when the pain gets to unbearable status, I feel like my head and neck are on fire.....shoulders as well.
   I take a wash cloth in ice cold water and lay them on my neck and face, and repeat.....
  you are the first I have ever heard mention this......but yes it happens to me all the time, the cold compress, feels good while its cold..I hope to help.....