How do I explain this...?

Do friends and family look at you like you're nuts, or delirious, perhaps a hypochondriac when you try to describe this injury? Frustrating, isn't it.

When you have pain that no one can see, you find yourself on the outside looking in a lot of the time. People just react to your complaints like you're batsh*t crazy. You can feel somewhat disconnected from "normal" people, who walk around seemingly without a care in the world, much less a constant, nagging burning, ache, throbbing, or sharp, stabbing neuropathic pain.

For many people on this blog, it's just an annoying numbness...I imagine it must be like that dead feeling in your mouth that turns to pins and needs when you leave the dentist, which typically fades after a few hours. Except it doesn't go away. Most seem to have the burning tongue in common,

Um, ok...

among a variety of other symptoms. How do you describe your tongue burning?

• "It's like you've burnt your tongue on hot coffee. Every morning.
• It's feels like you've scraped your tongue on the sidewalk, only there is no scrape mark there.
• You know that moment you touch a hot stove, and you yank your hand back because it hurts... There's no evidence of a burn yet, but it stings. Imagine that my tongue just touched the stove. All the time. Every day. "

As for me, my tongue is hypersensitive to every sensation... I feel everything twice as much on the left side as on the right. This includes everything from spicy foods, to the natural curves of my teeth. I also get weird little headaches, sharp ear pain, and an achey throbbing in the teeth sometimes that feels like I spent too much time biting on a popsicle. The pain in my face feels like someone is pressing a knuckle into it. And it changes from day to day. A lot depends on weather, stress, sleep, and occasionally, I don't really know why it's hurting.

 How do you describe this to others, and what is their reaction? Reply in the comments.

Updates for a new year

My apologies for disappearing for awhile- technical difficulties with Google being buggy. I couldn't publish anyone's comments, nor update my blog. Today I went to comment on one of my own blogs, and -presto- all of a sudden it will accept my login, from the comments screen only, and now lets me post. WTH?
Google doesn't seem to like Macs (and my old, wheezing PC's hard drive is just about dead).

Anyway, enough about my technical issues. Month #13 has been intense; I finally started a regular, full-time job. I spent much of last spring running all over town to various doctors trying to figure out why my mouth was screaming in pain all the time, and lost the temp job I landed.
By fall, I found another temp job, then another, about 6 weeks each - I was medicated, so although I was dealing with the pain better, I became sleepy and forgetful, which doesn't go over real well in the work place. Fast forward two temp assignments lost later, and it's New Years 2011 - I get a job offer.

I've been at the new job a month - long enough to get benefits and disability insurance - YES! Of course, the downside is that the job's very intense, and while it should be a distraction from my pain, seems only to add to it. Much of this is due to being worn down from working long hours and driving long distances, and the stress of not being home with my child.

It seems the Lyrica has stopped working; I have been taking 50mg 2x day, so even tried kicking it back up to 3x/day, but found no change. Meanwhile, I've gained a lot of weigh; I'm now chubby and swollen around the ankles, with brain fog. Very attractive. I read online that sometimes Lyrica does stop working after some months, so am looking for alternatives, yet again.

Cymbalta seems to be the favorite pick with the least side effects. I really don't want to be on an antidepressant, but clearly I'm running out of options.

For those who don't read regularly, here's the rundown:

1. The pain in my tongue is relieved by chewing gum (Pina Colada being the most helpful flavor), but most readily by Clonazepam tablets allowed to dissolved on the area of burning. That provides about 1/2 hour of relief so I can get through the really tough times, but makes me sleepy (so I spit out the tablet, don't swallow it)
2. The pain deep in side my cheek/teeth/gum where the root canals went in last year is not helped by Clonazepam. For that, I've been taking Lyrica, which was helping for about 6 months, but just seems to be dwindling of late.
3. I sadly have to avoid caffeine or anything that might stimulate the nerves; in fact, I find alcohol calms the nerves; that then becomes a balance between being relaxed so the pain's less distracting, but needing to be alert. Oh, the irony.
   
4. Finally, I continue taking B vitamins and multi-vitamins. I no longer do acupuncture, though my head still hurts on the left side, and I still can't sleep on the left side.

I'm going to a new orofacial doc next week, someone who said he at least knew what a lingual injury was...will report back after that visit next week. (The neurologist from the orofacial clinic at the dental school I went to last year is good, but only comes in once/mo; I have to wait til March 1st, and take several hours off work to meet with him. Therefore, I'm exploring other options.) Trying to schedule Dr appts when my boss is out of town next week; I feel like such a child. But I can't lose this job; Lingual nerve injury is not the kind of thing they write you a disability note for.

I am wondering if some kind of neuroma formed that is preventing the healing which I should be experiencing by now. Around month 9 I plateaued and stopped improving. The nerve may be compressed/ scar tissue may be around it, further extending this nightmare. That is what I will ask the new doc next week.

How's everybody else doing? Anyone discover any great secret to pain reduction, like the hot pepper rub (but less disgusting)? Do tell!