I am just wondering if any other TN sufferers get nerve pain through their body?
I have TN on both sides for years and this year the pain has got really bad on my right side and docs did the glycerol injection which failed. This was in April and since then the nerve pain has traveled down my arms,thighs,hips,pelvis,knees down to the soles off my feet. Now the pain is going up my spine.
Some days I can hardly walk and the TN pain is just as bad.
Docs have taken a while to do anything I feel they just fobbing me off. They even telling me I cant get TN on both sides off my face and then i come on this website and read so many off you in the same boat as me! I have just made my husband sit and read other stories so he believes me!
Finally I got an appointment for scans and lumber puncture next week.
I would love to hear from anyone with similar symptoms please???
What do these other pains feel like? I get pains all over too. Like someone is jabbing a voodoo doll of me. They are not electric like the TN, but rather sharp, stabbing and violent. They are deep, down at the bone… I also get s burning type pain in my upper body. The doctors look at me like I am crazy. They say it can’t be related but I’ll tell you while the type of pain is different the behavior is very similar. The way it moves around, the way it comes and goes, the way it sets up in a cycle that you can almost set your watch by. Now I will say that my mother complained of these very same pains all over her body but to my knowledge she never suffered from TN. I have heard the term polynueralgia used on the internet but can not find a clinical diagnosis for it.
Hi peaches,
Sorry to hear of your pain throughout your body as well as TN, I can tell you from my own experience that bilateral TN is NOT as rare as doctors and the literature suggests.
Back in 2002, 3 months after I was first diagnosed, I had TN on my left side of my face as well as on my right( never at the same time). I saw a well known neurologist who was quite cocky, and she looked at me like I was crazy and said " it’s impossible, only people with MS get bilateral tn and it is very very rare. You don’t have TN."
Uhm, really? I did and I still do.
I responded to Tegretol immediately, my description of my pain fit classic TN 1 to a T, my left side was TN2. I asked her what she thought it was…and she had no answer…
Long story short, find a doctor or neurologist who “knows” a little about TN and one who is willing to learn more about it in order to care for you properly.
Just because the doctor, specialist, neuro or whoever says that’s not what it is, doesn’t mean that’s the truth.
If you’ve ever felt the pain of TN, you KNOW what it is. I’ve learned over the years that I need to trust myself and advocate for myself.
I know that now all these years later I know more about TN than most doctors, but that’s ok, it’s important to research and learn as much as you can so that you can make informed decisions.
As for the rest of your nerve pain, neurology is a vast field there are many different conditions that overlap each other in symptoms and it can be hard to find a cause.
Find yourself a good neuro who is willing to do some tests and dig deeper into the cause of your pain.
((( hugs ))), Mimi
I know I have TN pain on right side of face. I also have this type of pain down my neck, into my right shoulder, down my right arm, and into my fingers. My neurosurgeon told me the pain aside from my face could not be related to TN. I know it is related somehow. I had shingles along that pathway after gamma knife. My right arm is also weak. I can pick up my hair dryer and feel the nerve pain in my face. So much is unknown. My mother had nerve pain, but drs. did not know how to diagnose it then. She told me how she hurt. Sad to say, I did not understand how intense it was for her. Her face did not hurt, but her body did. A neuro PA told me pain could follow nerve pathways. When I read posts like yours, I know I am not crazy.
Thank you everyone for your kind replies. Brian my pain in my body sounds quite similar to you I have sharp shooting pains right down to the bone but i also have the aching burning throbbing pain also. Some days one leg is worse than the other then other days my face is the worst. I also have dry eye only in one eye tho. Its all so strange. Sometimes I think the docs think im making it up as I go along! Like I would like to be this ill!!!!! Im only 33 and now my life is like a 90 year olds.
The only doctor that believed me besides my acupuncturist is my family Dr. My neurologist gives that “oh, come on now” look. I have been tested for lime desease, diabetes, neural pathway connections, and fibromyalgia, all negative. You should be tested for these things too. Shingles is another one, I’ve never had them but that are reported to cause wide spread random pain. I only get the burning, aching type 2 pain in my upper body. Mainly neck, back and chest. Although sometimes my arms. The sharp stabbing voodoo doll pains happen anywhere, though usually start at the extremities. They can be constant or intermittent, they jump all around my body. I have started taking lyrica s few weeks ago and just increased the dosage. It seems like it may be having a positive effect all around but it’s too early to tell. I have had periods of a few months at times that were relatively pain free so we’ll see on about 6 months if it really is helping or not.
I have had bilateral ATN and bilateral TN since the age of 17, following a jaw reconstruction surgery, in December 1986. Just within the last couple years I have also been diagnosed with ON and GPN. Just within the last 6-9 months, I have been getting neuralgia like pain in various parts of my body but most often in my right leg. I know what Sciatica feels like, I had it horribly before my spine surgery in 2008. I typically get the shooting deep to the bone searing pain but like right now it is that deep aching can't hardly move sciatica like pain along WITH the shooting pain through the back of my left leg, butt, and lower lumbar. It seems like as time goes on, the more and more nerve pain I am experiencing and it is beginning to become widespread. I had MS ruled out in 2009 but am not convinced something more is not going on since I have had ATN & TN for nearly 27 years, Essential Tremors my entire life, severe fatigue with episodes of wanting to do nothing but sleep for weeks then can't sleep at all, cognitive issues, tingling/burning in hands and feet, etc.
Hi Mindy Utz thank you for your reply. My symptoms are so like yours I also have the tremors and the burning tingling in my hands and feet which is particularly bad at night. They also ruled out ms for me to but didn’t test for anything else. They saying they think it might be chronic fatigue but I’m not so confident in that. Have docs given you a diagnoses?