I am new to the site and my doctors are at a loss as to what’s going on with me. My pain started last Jan after a root canal. When the dentist was giving me the novicaine shot in the very back of my jaw he hit the nerve & I immediately screamed as the pain shot to my ear, and that was the beginning of the TN. Two days later I broke out in shingles or a cold sore (they haven’t figured out which) on the same side of my face, which swelled up the whole left side of my face and caused even more pain. Never had a cold sore in my life, which is making us think it was probably shingles. But a few weeks after that, the pain began to spread down the entire left side of my body… My arm, my sciatic, all the way down my leg. My arm has been taking the brunt of the punishment… I even went to the ER one day thinking maybe I was having a heart attack the arm pain was so bad, but I wasn’t, it was the nerve pain & a panic attack. My neurologist diagnosed me with TN and post herpetic neuralgia, but has given up trying to help me since I have been very intolerant of the different meds he tried. He referred me to pain management & that was it.
I had to go to the dentist a few weeks ago, and the whole thing started all over again… Another shingles outbreak on my face two days later!!!
I have some type of body wide pain in addition to TN. They have not figured out what it is yet but it doesn't appear to be related to the TN. Your case is a bit different sounding. I would find another Neuro and get a second opinion. You may want to see a Rheumatologist as well.
I have complained about left sided pain for the past couple of years to my doctors but no help there. It started a couple of years ago in my neck/shoulder/left arm sporadically and in the past year I have been getting pain in my legs. My tn pain
started a few months after a 3 hour r/c procedure by a holistic dentist.
shadow2 said:
I have complained about left sided pain for the past couple of years to my doctors but no help there. It started a couple of years ago in my neck/shoulder/left arm sporadically and in the past year I have been getting pain in my legs. My tn pain
started a few months after a 3 hour r/c procedure by a holistic dentist.
I find that very interesting. While I have only been diagnosed with TN for about a year I have suffered from it for over 20 years. About 10 years ago I started to get severe burning and sharp pains in my upper back, neck and then into my chest and arms. I take it your TN and the other pain are on the same side, I am bilateral with the TN so it would stand to reason that I would have the experience on both sides. It then progressed into my legs and now into my feet. It gets so excruciating at times I cant even put my feet on the floor or on the couch or anything and so I sit holding my legs out so my feet don't touch anything as long as I can for relief. My first Neuro did one test that came back A-OK and that was it, she wouldn't look any further, "must be all in your head". I have since found a new Neuro who is trying to help and have also been sent to see a rheumatologist as well.
It’s all on my left side, and same as you it’s in my neck, shoulder & arm all the time. My leg pain comes and goes, it’s much worse when I’m driving or sitting for extended periods. The neurologist I was seeing had the same attitude with me… Like I was crazy & making it up or something. That’s the worst feeling when the docs & other people don’t understand how badly this really does hurt. It’s snowing today & I’m curled up on the sofa in awful pain. I’m only 35 & I feel like a little old lady who can predict the weather with her pain!
As for the second opinion… My family doctor and I have been calling all around & I finally got a neurologist at Jefferson University hospital to agree to see me once I get a new MRI/MRN and he reviews all my charts.
It was just novicaine, had it many times before that without any issue.
So sorry, it’s lidocaine.
Your story is just CRAZY! I am so sorry for all you are going through. Please accept my friendship and let me know how you're doing.
Always~Laurel aka shinglesdidit
I have been getting nerve pain all over my body, not just legs and arms. It seems worse since I tried topomax last spring.