Chronic Pain members - Welcome, please introduce yourself

Avolear rehabdo myo sarcoma; (sp.) It was diagnosed with a biopsy but ot had to be done first by my clinic, then by the U of MN hospital and then by Mayo. They all got it right but couldn't believe that's what I had. Case 451 since 1855!

New here. Long time with TN & now anesthesia dolorosa. Had gamma knife and 2 MVD procedures. Varies medication but severe allergic reaction. Taking Vicodin just to tolerate life. Taking several naps throughout the day so I don't repent on Vicodin.
My insurance (BC & BS) said no to brain stimulator.
I have tried PT, Accupuncture, diets but the constant burning, stabbing,sand paper grinding on my right lips, cheek, nose, gums and eye is horrible. Hurts to talk or being on the computer for more than 30 min. Always TIRED even before Vicodin.
I hit a dead end. Presently on disability funds from work. But this is coming to an end. Mutual wants me to get ANY type of work. I was an RN x 30 yrs.
My hope and strength is on God but the pain is unbearable.
Need direction on how to fight insurance and what type of job would be suitable. Also getting social security disability..SSD. But it's ridiculous.
Oh well need to get well to return back to work.
Thx for letting me share

What is anesthesia dolorosa? Please take the time to use whole sentences. We're interested but it's hard to respond in a helpful way to that which we can't comprehend. I don't like typing on the computer, it hurts. I use the voice to text function on my Samsung III which is an older phone. I always need to proof read but it's still better than the keyboard.

Yes I would like to know also.

@2jalapenos

Welcome to Mayo Connect. I am a Volunteer Mentor and am not a medical professional, therefore I cannot make any diagnosis nor give medical advice. However, members of this community, including myself do offer our own experiences with medical issues in the hope that we can support and help each other.

I too was curious about "anesthesia dolorosa", so I Googled the term. According to the description I read, this is also referred to as "phantom pain" that occurs with the loss of a limb or other part of one's body. If you are able and willing, please let us know more about this pain for you. I didn't really understand your comment. If possible we would like to share experience with you, which may mean that you need to be connected to a group where others with anesthesia dolorosa are commenting. Looking forward to learning more about you.

Warm regards,
Gail B
Volunteer Mentor

I can understand that it is a rare form of Sarcoma, a mesenchymal type of cancer. May be, it would help to consult
Dr.Duma, a hematologist, oncologist; just came to know that she works at Mayo. It requires chemotherapy and
regular review, as advised by the oncologist. Take care. Best wishes.

2jalapenos: If possible, being an RN should help to contact a pain doctor, as it seems like a problematic pain.
Hoping and wishing well for relief, soon.

In regards to typing / using a keyboard,i too have trouble with this task. At this very moment am using a 3 inch Android on which it takes me 40 mins to construct a few paragraphs. If using a pen & paper it would be a15 -20 minute task.I have Raynaud's syndrome & my hands are ALWAYS COLD,which dramatically affects my speed.I find "Hot Hands" quite helpful and I am using one now. I put them in my shoes also. At first I thought it would be too uncomfortable,but it isn't as long as you place them strategically.
The best remedy for writing/typing as fast as you think is something I thought of over 12 years ago, a device
one would connect to the Brain which transmitted thoughts onto paper. Even if it existed,i wouldn't be able to afford one.

Sorry, I must be in the wrong group.This was my first attempt a forum.Thought I typed trigeminal nueralgia.
Nevertheless, here is what I know about Anesthesia Dolorosa (AD) . Anesthesia Dolorosa literally means numbness but with  pain.
Having trigeminal nueralgia the medication was not successful. So the the 1st procedure I had was with a gamma knife. This damaged my trigeminal nerve (TN). I have had two other procedures, micro vascular decompression (MVD).My Trigeminal nerve is constantly firing 24/7 now. 
My right (R) lips and R. tongue feel like I've taken a bite of a hot jalapeño.But when I talk, my lips get electrical sensation. This triggers this electrical pulse to travel to my tongue, cheeks, nose and eye. When I wake up in the morning, my pain is quite, till I start talking or eating.I have minor electrical discomfort but if I eat or talk the pain beginnings. My booth upper and lower frontal teeth  feel like a razor is rummaging in my gums.Only the right cheek feels like some one is using a sand paper on it. By the end of the day, my face  feels like I was hit with a 2x4 piece of wood.My right nostril feels enlarged and its burning hot.  Lastly, my poor right eye. The sensation I feel is like I have a fingernail clipping inside. I can drowl, have a runny nose or an eyelash inside my eye and will never feel it. Pain is hard to describe but intensity is not. People can not imagine someone having this amount of pain and look normal. The pain cause an extreme FATIGUE.
Again, I apologies for posting in the wrong area. I will try again finding the right group. Just thought I share and seek advice on how to fight the heath insurance for a brain stimulator? Also inquire what type of jobs do most folks still have with trigeminal nueralgia?

The more languages I acquired fluently, I find it challenging to slow my thinking process. If there is a device that can type thoughts, I hope it is capable of translating the languages as well. : )