So very glad to hear you are doing better! I agree the burning ache is much better than the stabs and compared to the electric shocks make that kind of pain very liveable. I am there right now, still getting some strong stabs now and then but basically the dull ache and burning and for me those are good days! TN does make you appreciate things in a differnt way, the simplest things make for a good day, being able to eat, talk, brush teeth, etc. All taken for granted before, but now make it a very good day. Thanks for letting us know and wishing you many, many pain free days :)
Hi Lupa,
I know this reply is years late…lol…but I recently joined the site and I came across this thread and I’m commenting because I feel exactly like how you felt years ago! I read that you said you never really got a break, the pain was always there and I hope in the last couple years it has gotten better? Or best case scenario it went into remission? I’m also pretty young, TN started at 22 and I’m 29 now, thinking about MVD but your story is quite scary…lol. Anyway I’m wishing you the best and hoping for a permanent remission for you and all of us!
Hey Lupa, don’t worry about venting…we are all here together to share this odyssey we are all on, good and the bad. You have definitely been through a lot, I sure do hope you and your team you are working with can come up with something to get you much more relief. You sound like a very strong person, but this disease can take its toll. Please keep checking back in with us and let us know how you’re doing. Take care!