How do you explain to your boss, co-workers, etc that even tho you LOOK healthy & fine, you are dying with pain on the inside? I seriously think they think I'm just making this all up. I don't have the traditional 24/7 pains, jolts, shocks. Only occasional ones. Sometimes it lasts for 1 day, sometimes for 2 weeks and sometimes longer. However, I have been in remission for 1 1/2 years, and this past week it just came back from nowhere. I know they try to understand, but its hard because I'm not knocked to my knees with pain, I have a very high pain tolerance. I've tried all the meds, Gabapentin, Trileptal, Baclofen, Topamax, Cymbalta, etc, etc, etc...none of which helped. I've not ever had any procedures or surgeries because I don't feel that my condition is bad enough for that. I've only tried chiropractic, accupunture & laser therapy. None of which my insurance covers. 2 years ago I had extreme TN pain and I was brought to my knees screaming in pain. My dad drove me to Mayo Clinic in Rochester, and went in thru the ER, which was a waste of time, because they said I had to see a Neurologist at the Clinic. Went to the clinic and registered and checked in, sat in the waiting room for 7 hours, and was sent home, without seeing a Dr. Not easy to just up and leave my husband & kids and travel 6 hours for a Dr appt. So I never did follow up with Mayo again. Sometimes I wished I did. I try to inform my co=workers & friends of what I'm going thru, but I really think they think I'm nuts! Anyway, just need some ideas of how to inform people about TN and educate people. There are a few videos on YouTube I've had my family watch, so that helps. Any suggestions from all of you would be super! Until next time.
I am with you on this. I don’t know what to tell co-workers either. Unfortunately, since 9/2010, I have struggled with TN pain everyday, mostly between late afternoon to early the next morning. My worse pain peaks at about 130 am and lasts a few hours, so I never get a full night’s sleep. Unlike others my husband has become a wonderful masseuse which actually helps reduce the pain most of the time. Usually ppl don’t want to be touched but if he goes right to a certain spot, it helps.
But back to your question, I don’t know what to say either. I’m constantly tired since I don’t get a good night sleep but I try to focus on the fact that even with my MS and the TN, and now Occipital Neuralgia, I still can work, love most of my job, and have a wonderful family!!