have fibro and tn
 

hi . you asked if anyone out there has tn and fibro. i was diagnosed with fibro and sjogren's with arthritis around 2 yrs ago. then in feb. i was wrongly diagnosed with tmj which later was found to be tn. i have had the mvd surgery 8 weeks ago. so far the surgery has given me around 50 to 70% relief on most days. it has been a real struggle, but the Lord has been my refuge and strength. the fibro got better when the dr put me on cymbalta. i have been on neurontin for yrs for other health problems. i am on 8oomg of it 3 times a day. my drs think it good for lots of my problems, i could not take the tegretal. i itch horribly. am allergic to most pain meds. i take the talwin or ibuprofen when the tn is at its worst. unfortunately i began having some hoarsness in my voice following the mvd and it turns out after seeing ent dr that the intubation left my vocal cords damaged. dr put me on voice rest for a week and now i have to go to speech therapy. its complicated. dr says my soprano voice is gone and i am an alto permantly. i am a soloist at our church. seems like if its not one thing its another. i'm 53.

Wow, Lola, you have really been through the mill! I hope you do get your soloist voice back. I've always admired people who can sing - what a wonderful gift you have shared with your church.

I have been on Lyrica for 3 weeks and am happy to report that I have LOST 5 lbs! :) I've been so afraid of gaining weight that I've cut out all in-between meal snacks and been eating healthy. :D

It turned cold and windy here this weekend - which put me in a major flare up. My doctor fit me in for a steriod trigger point shot today. He hit right where the worst pain is so hopefully, I'll have some relief soon. It felt sooooo good for a couple of hours when the numbing agent was still working but boy, was it ever a bummer when it wore off. I'm going to bed now so I can just be asleep and not feel it.
Mary

I'm finally getting back to this site. I'm still toughing it out with the trilpetal. I am actually having long periods without pain, but I did ask to try to up my dosage again a bit. Maybe I'm hoping for too much, but the dosage I'm on does poop out some parts of the day. I did ask my neurologist about the Lyrica again and he agreed that it is sometimes used for nerve pain, but he still thinks trileptal is the better bet. My friend who was on Lyrica started getting a lot of fibro pain again, so she has elected to ask her doc about going off of it. Obviously, there is no perfect medication, alas. I am 55, by the way--wish I could have waited until later in life to have all the health problems.....I was diagnosed with fibro about maybe 10 years ago or so.

I too have stabbing/burning pains in my hands & feet. I've been diagnosed with TN (March of this year) & in the last couple of months started getting the pains in my hands & feet. The Dr. tested me for B12 deficiancy, but since I didn't hear back from her, I'm assuming the blood work came out ok. I'm wondering if it isn't MS or Fibromyalgia. The Gabapentin doesn't seem to work for the pain in my extremities.

Hi achy
I have ace pain. I have nerve pain in my entire body. Evey inch. Buzzes vibrated iceprick pinches tingling burning stabb. Twitch and spasms too.
I get this all over at the same time all day. Just changin in how bad it it is

I tried lyrica and it didn't work for me.
I get the intense deep throbbing ache with it too.
It's wierd how face can hurt like this. But no fun all over

All my test have been normal.

Lyrica seems to be the new Neurontin. It should help. My insurance will not cover Lyrica unless I am on Neurontin for 90 days and it is not helpful. Neurontin seems to cause weight gain and it makes my head feel the pain with numbness when it is happening. They asked me to try topamax again and I am scared because I don't like the side effects of it. I have numb fingers and toes. I have chiari 1 malformation, fibromyalgia and trigeminal neuralgia. When I get a good day I really appreciate it. I am thankful. Seems to be more bad days than good. :rolleyes:

<<...Do any of you folks with TN also have fibromyalgia? I know it can cause facial pain...>>

I have Fibromyalgia & TN, and was on Lyrica for a long time. At one point, I was taking 300mg three times a day! :eek: Ultimately it just quit working for me.

But while it was working, it was Heaven!!

I was taking Lyrica and I experienced weight gain with it along with several other side effects. I didn't get any weight gain with neurontin. And, I also have Fibro but I was diagnosed with that long after I'd been diagnosed with TN.

hi there
 

I have done all the drugs under the sun :)
They offer relief but thats it, the only drugs that work for me are
tegratol, neuronton, and liorasal all at once three times a day.
I have had TGN now since I was 30 kinda used to living with it at this stage