Hello, I just read on the net (mayo) that some people experience pain I the index finger related to TN? I have always thought I had nerve pain in my finger but was too embarrassed to mention thinking doc would think I was off my rocker. Has anyone heard of this before? I just read it today but no real info about it.
Not heard this anywhere but TN is weird and rare!
I have tingling and nerve like pain in index finger. It runs up my arm into the neck on the side I have TN. I am convinced it is related to TN.
Thank you for the reply. I never would have guessed its related to TN, however I def know nerve pain. I just about fell over when I read that on the Mayo clinic. However, it was a mere mention, and I could not find any further research on it. I think I will mention it to Neuro anyway. I was suppose to have an MRI because my neuro thinks my SEVERE tongue pain is related as well, but then I lost my health insurance so I didn't have the MRI done. I still have medication to last me a couple more months. I have such mild TN, I feel guilty being on this site, but I am afraid what the future could bring.
Thanks again! I feel a little less embarrassed now :)
sunshine said:
I have tingling and nerve like pain in index finger. It runs up my arm into the neck on the side I have TN. I am convinced it is related to TN.
I read that same article. I found it strange but fitting as well. I seen neuro today and wanted to mention it, but didn't for the same reasons as yours. The pain in my index finger is mild, but is quite painful in the finger right next to it. Its really noticeable if I bend the fingers all the way to touch the palm or try and do something that requires finger strength. Mine is in my left hand.
Mine is the right index. Seems as though it goes off when its more relaxed, or with non-movement. when it goes off it goes off! Same side as the TN. I thought I just had arthritis in my finger, but thought it strange how the shooting pains come on, and its just in one finger and not necessarily the joint like most arthritic pains go. Thanks Maudie!! I do hope you are doing well and that your appointment went well today.
Hi Mary
I’ve had the index finger and tingling/ numbness down the shoulder and arm since the very beginning of this miserable pain cycle which started almost four years ago, but only in the evening/ night. This symptom confounded most of the doctors. It was thought to be some sort of C6 neuropathy. My pain did not start with the face shocks…but it progressed to something like that. My volleys of shocks felt like they were coming from deep inside my head - which I regarded as somewhat embarrassing and unbelievable myself, so I have an idea of what you mean. those volleys have since stopped but a host of other pains and weird sensations have chimed in.
I knew I read about the index finger pain somewhere but had forgotten where…which I’d like to blame on the elephant doses of gabapentin but as my very dear friend/ neighbour/ retired nurse said, You can’t blame everything on gabapentin!
Don’t be afraid to write everything down.
Bellalarke
I have recently read about this too, I have a very painful arm and shoulder and the Rheumotologist and p.t. Have both started to wonder about this as well after scans, treatment, etc has failed to make any changes after several months of treatment. I have read several articles about this and it seems to be legit.
Thanks Bellalarke! (cool name by the way). I need to run around this website and pick up some more info. Wondering what other pains are related that I have and pass off to some other reason. I was diag abt 5 years ago. My TN is in my right side. I have been on Gabapentin for so long now. Yes, it does make you spacey and I have bouts of short term memory. I always pass it off as "well, I am getting older", then my neuro said that happens a lot. I have grown quite accustomed to the med now however. I only have facial pain every now and then, so I assume the med is working and am afraid of ever going off "just in case". Its so infrequent so I really cant complain too much. Most have said it will never go away, but I live in fear everyday that I will end up like the people here who have such intense pain. My best wishes to everyone. The short spurts I get are painful and I feel bad complaining. My biggest issue is my tongue pain. I have had three surgeries, and it always come back. I have never read anything close to this on any website on every topic related to the tongue, and my Neuro believes it is due to TN. Most days are bearable, but I get bouts on that too.. Its the most painful surgery I have ever had, pain killers don't work, and the med to numb the tongue only lasts minutes. And I will never do it again because it always comes back, and its for the most part 24/7 and no meds work for it. I am starting to talk with a lisp some days because it becomes swollen. I kind of got off track here, but my point in essence is that this TN effects so many things. Did your Dr believe you about the index finger? Have you found any more information on it? Would love to know where and read it!! Thanks so much, and I hope you are doing well. Have you signed the petition? I posted it on my facebook so all my friends can sign! TN Patients need ALOT of help! A cure!
Bellalarke said:
Hi Mary
I've had the index finger and tingling/ numbness down the shoulder and arm since the very beginning of this miserable pain cycle which started almost four years ago, but only in the evening/ night. This symptom confounded most of the doctors. It was thought to be some sort of C6 neuropathy. My pain did not start with the face shocks...but it progressed to something like that. My volleys of shocks felt like they were coming from deep inside my head - which I regarded as somewhat embarrassing and unbelievable myself, so I have an idea of what you mean. those volleys have since stopped but a host of other pains and weird sensations have chimed in.
I knew I read about the index finger pain somewhere but had forgotten where...which I'd like to blame on the elephant doses of gabapentin but as my very dear friend/ neighbour/ retired nurse said, You can't blame everything on gabapentin!
Don't be afraid to write everything down.
Bellalarke
Hi Mary
What surgeries did you have for your tongue? Gruesome to think about, ackkkkk.
I get tongue pain mostly in the evenings when there is a general build-up of all the symptoms.
No, I didn’t have too much trouble re: believability. I had the same GP for a decade and had been at same clinic since 1995. So I had a good track record, I guess, even though I had fibromyalgia, not a big complainer and sorted issues for myself with some guidance. My GP has always believed me. She diagnosed ear infection in the beginning. We will never know now if that was the case or not. Anyway, pain kept evolving into a kind of hell and I had every kind of test you can imagine until finally saw a neurologist, and he was a real dud. Second one brilliant though. However, never would have gotten to her if my GP didn’t believe me and kept pressing on making refers for me. Now waiting for September date for MVD with young well trained vascular surgeon. Sometimes I had great difficulty expressing the pain and that’s what I would say, “I don’t know how to tell you about this pain.” It was unbelievable to me what I was experiencing. I think what kept getting me from appointment to appointment was my dead earnestness that something terrible was happening to me, and a 10 page list of what I titled The Strange Pain.
Yes, I have signed the petition.
So sorry your tongue pain is so unbearable.
Keep Heart
Bellalarke
I have had the "electrical shocks" on the left index finger only once. That is the same side as my TN. At that time, I had a small little scab next to where the pain was. I was thinking they were somehow connected, although, I've had small abrasions before and never experienced nerve pain. Then, I was explaining my TN symptoms to a friend and sent her info on it from Wikipedia (Trigeminal Neuralgia). In that article under "signs & symptoms", it mentions the index finger in the 2nd paragraph last sentence. That is how I found out that my symptom was from TN and not the stupid little scab!
I get lots of numbness in my tn side. Doctors dismiss this but I don’t like it. Last night my small finger went numb andttag skin hot to touch. X
I have had TN for about 3 yrs and pain on my TN side for 2 yrs. The arm/shoulder/neck pain is much less frequent but pretty powerful when it troubles me. Also the sporadic radiating pain in my fingers (usually 1-2 fingers at a time) which is
very uncomfortable but passes in less than an hour. It gets numb and tingling at the same time and often lifting my hand over my head gives some relief.
I brought it up on another site, but I have nerve pain in my left index finger too and read about it on the University of Rochester Medical Center site. http://www.urmc.rochester.edu/. I still have the article, I printed it last year.