Looking for friends to support each other with this horrible pain of Tn

Hi I am back on here. Haven’t been on here for a while. Looking for friends to chat with and support each other, who are living with this horrible pain of Tn. I also have fibromylgia on top of it. My faith in God is the only thing that gets me through this horrible pain. I would have the surgery if it would stay gone. I am on meds now. I Just got married on Valetines day. I hope to find some friends to chat with, and help each other on this horrible road of pain, that people don’t know what we go through, because you can’t see it, and you they can’t see it. So many sleepness nights. I hope to hear from some one to chat with and support each other.

I am no longer working, because of this horrible pain, but maybe one day I can return. That was so depressing, but I am getting over that, and I wish you all the best of going through this. People don’t have a clue of what we go through. Hope to hear from some someone soon.

Hi Summer66,

I understand how you feel. Even this morning I woke up at 5am with the pain. I started new meds but there still seems to be a level or degree of pain even with treatment. I too have been looking for support and someone who understands, My friends and family just don't seem to get it, not matter how I explain it. And when I see them no one asks how I am, or that it really is an issue. The only one who understands is my husband because he has been there with me when the pain really hits hard. I would love to chat with you if you need someone!


hi ya summer66 i would love to chat with u some times wen ur on chat be nice to talk xx

Thanks lorraine. I hope you are feeling good. Thanks, and may God be with you, and his love and peace, it is hard going through this, but my faith keeps me going. Have a nice day. Lisa

Hi Summer66, I am sorry for your pain as well as the sleepless nights we all know it dosen't make matters any better. I recently had to start taking my meds again after a few months of believing I would force my remission. Ha, well I did have a few months without the tazer feelings now its more dull and achy. Noise, light like glare bother me. Air conditioning is a big deal as well. Congratulations on your marriage I pray he is a understanding man for you. The best thing here is that we don't have to keep explaining how terrible it is to keep describing how bad you feel that you you even have it. God bless.

I’m not even sure what I was diagnosed with that’s the most frustrating part. I had 7 doctors playing operation & in the end I was told I had an aneurysm. I later found out I had a tumor removed & my parotid gland saved. I was so thankful to be alive I didn’t question a thing. 6 years later I wish I had. I am now loosing my hearing in my left ear & my pupils don’t match. When I have the electric pain in my face it causes migraines & vision issues. People started pointing out one of my pupils is tiny & one is huge. 4 doctors later no answers. Should I be checked for fibromyalgia my mother has it. Is there a test for it??? Hope we can chat maybe we can help each other

Bad night, tossed and turned by 4:00 i just lay their with a hot compress but it hurt to put on. The Dr.s gatekeepers won't let leave a message regarding increasing my triliptal until i go back to next appt. putting this on my credit card as well as my meds is reaching my max. So i increased it a little my self since he's done that unfortunately no help. i will have to go in and see him as well as letting him know that i need a plan. it's the tazer pain it is the kind that feels like I have a balloon inflated in my cheek that wants to expand and explode and my eye feels like i have a hot dagger in it while my jaw is being pulled by ice picks. Wonderful way to start my morning but I know its been worst in the past. My effexor was increased by my triliptal is lower than in the past so we are working on bringing it up again. Does any one get pains in shoulders and neck i know thats been going on before my tn kicked in again.

sorry i meant its not the tazer pain right now, its the dull ache

Am so relieved to know there are others out there going through what I’m going through! Not that I am happy you are all in as much pain! I can’t believe the amount if pain! This just started for me 14 weeks ago. I was just diagnosed 2 weeks ago! I’m going crazy!!! I’ve only had 2 hours of sleep in the last 48 hours :(. So glad to just be able to vent!