Burning thoughout body

[lilly690]

I have severe burning inside and out of my body for 17 years. Eyes mouth,  I have aronld chiari malformation and have had two brain surgies. I also have lyme disease. Also all of my senses are hightened, smell and taste. The only thing that works for it is xanax. But I find myself finding myself having to take more of it . I have been on the same dosage of it for 17 years . Please help. Gia

[n40066]

that a girl, julie!!!  without dreams, we have no hope, without hope, we die.  end of story!  and nooooo body dreams like we can dream!!!!!!!   lol!

[juliebug310]

Thanks Elizabeth. It just ***** not feeling good all the time. I just told my friend that if I could have one day of pain free I think everyone would accuse me of being High. LOL and I would be......on LIFE!! To be able to do......whatever I wanted. AAHHHH A woman ccan dream:)

[n40066]

julie....ask your pcp about the possibility of fibromyalgia.  this can cause a burning/painful sensation anywhere in the body.  to the point where you can not even stand to have clothing touch a certain part of you that is experiencing the sensation at the time!  it is very painful and is often described as a burning sensation.  your pcp may refer you to a rheumatologist for dx.
elizabeth

[juliebug310]

LOL yes we are a lucky bunch!! Funny you said ulser because my pcp told me i might have one. 3 years ago when my step-mother and sister died 2 weeks apart I started to have that pain. Same pain. So self dx....I prob have an ulcer. Trying to keep everything under control while your bodt if fighting you every step away could be a good way to discover one...lol I have had a lot of burning in my face, Neck on up. Even my eyes feel like they have fever in them....Does this make sense to any one? Every one I have asked said no. I can be cold wanting to be under blankets but face feels on fire. Not hot flash. Hours and hours of fire!!!?

[n40066]

lilly....the burning in your upper abdomen is most likey a form of acid reflux.  try prilosec otc.  you should notice an improvement within 48 hrs or so.  either way, you might consider making an appt. to see a gastro dr. to be checked out for that.  julie, same for you, but yours sounds more like an ulcer or fibro to me.  the burning between the shoulders is most likely nerve related in nature and almost all of us with cm have that one!  aren't we such a lucky bunch!  lol!....but remember, this is just my humble and very untrained opinion!  lol!  i'm far from a dr, just know a little from my own experiences and what i have gleened from others along the way.

np carolyn!  it's amazing how much can be linked to cm, isn't it?  lol

[*Stormy*]

That's so weird....so do I!! I'm always telling my husband that something's burning or something smells bad and he can't even smell what I'm talking about!! I will literally go around under my couches, along the carpet trying to sniff it out. It is completely ridiculous sometimes b/c it absolutely drives me nuts!! Thanks Elizabeth for sharing that, I had no idea it was related.

As for the burning, I, along with most of us have it...I have heard that it does follow along with a syrinx but in my case that is not what is causing it. It has, however, been indicated that I may be suffering from FM (which I believe was just set off from the damage from Chiari) and I am on Lyrica which does help some things. Have you ever tried Lyrica?

Sorry if I'm nosy but can I ask...what were your two brain surgeries for? Were they both to correct the Chiari?
Also, how did you get the Lyme's dx? I know that it is a really hard one to get dx and I actually have a friend that is in the process of that right now.

Carolyn

[juliebug310]

Didnt know about the taste and smell thing!! I smell things other people dont all the time!! Very sensitive!! I also have chiari 1. I also have burning right between shoulder blades all the time!! Upper tummy has been hurting alot latley also!! I just blame it on stress but I also blamed alot of my symptoms on stress and a hard life. We all need to take it easy on ourselves. I dont think any of us gave this to ourselves!! It found us! Keep strong and vigilant!!

[n40066]

the burning sensation could also be related to fibromyalgia.  you might want to see a rheumatologist just to rule it out. this is what it was in my case.  as for the taste/smell issue....i believe this to be chiari related.  as rod pointed out in a thread not too long ago, the cereberal tonsils control things like taste and smell.  having been a smoker for 36 yrs, my taste and smell should be greatly diminished...but they are not. quite the opposite, actually.  i can smell things long before others can or even when others can't.  this has come in very handy over the years and prevented many electrical and other fires in our family home!  lol!  hope this helps.  elizabeth

[jessbee82]

Hi lilly690,
I experience alot of burning in my body, especially in my stomach (or my upper abdomen underneath my breasts) and in my legs.

[selmaS]

Hi and welcome to the Chiari forum.

Have u been checked for a syrinx?Many times that burning sensation can be the result of having a syrinx.

U r lucky to find a med that is helping u...so many have not been that fortunate.

I am not familiar with the symptoms of lymes.....


Glad to have u join us, so sorry for the reasons u had to seek us out.

"selma"