Hi BON,
Thanks. I've been on LDN for about 4 or 5 years. I take 4mg right now.

I don't know what burning mouth is but I have ulcerative oral Lichen Planus which is probably similar painwise. OLP is autoimmune. I have other autoimmune stuff as so many of us with chronuc pain. Too much adrenaline and cortisol in our systems that lay waste to pit regulatory systems.

About 6 years, I heard about LDN and after studying it for a year! I quite intentionally found a doctor in town that prescribes it. There used to be a yahoo group with some good patient experts, one being a chemist. After studying so much, I feel rather like an expert too unless the rules have changed drastically.

You know, its funny (not funny at all) I've kind of lost a friend because of LDN. She has fibro and ive talked about LDN for a long time. Finally last week she was pleased to show me she was going to start it. She (esp her sleep) get very deregulated quickly. Her first script was for 4.5mg. I was like NO, NO. NO. I told her how nuanced dosage was and how to be successful with the least side effects and reason to fail, she needed to start exceedingly slow.

I hate it when Drs hear about it, prescribe it, and dont fo it right. People can't sleep, have terrible dreams, sometimes systemic candida blows up and they say LDN sucks. Didn't help. And in my case, my "friends" don't think I have any knowledge sadly (I'm also a nurse.) She had already gotten it filled so waa just going to take it because hiw can I know more then her doctor. Course lots of doctors prescribe it now and don't study it first. She invite me, via text, to go with her on her next appt and "school her doctor." I just don't have the bandwidth for snark and esp from a friend that should respect me. If you call someone a friend, don't respect them and don't trust them, then why bother esp like you said, life gets so small.

She took it ti the far end and suddenly started swearing at me big time on text which I wasn't even reading her texts, just trying to save her sleep which after 5 years and numerous doctors she is sleeping.

Well sorry to go on, its just funny you would mention LDN. I lost a friend over it last week. Its hard for me to decide to just not care and watch her go down ths rabbit hole. We were with other friends in the car so at least she can't be a "victim" to LDN. Victim is kind of her specialty sadly.

So at a time when I'm in bad shape and already struggle to do thjngs with people because if you keep saying you can't, soon people stop asking and we are alone.

For me right now, I'm used up with pain. I can't invite people over because my house is so trashed as what happens when you live alone and pain is the overriding thing in your life. I'm just trying to find a reason to stay on earth when I'm 69, all that's left is death anyway and this will be it to the end. Why bother.

Been a hard week. My therapist specializes in chronic pain and trauma. Seeing her today. Anyone else struggling with "what is my purpose" anymore when alone and barely able to get to the BR in the morning? Probably not the right thread but being in constant pain again like this (I've been on crutches since 24yo pretty much with CRPS. I fell so things are so much worse at the moment.) So pain isn't new, just so much worse since the fall. I run a small graphic design business from home and under deadline for a big project that is physically killing me to do but the money will help me hire someone.

Enough of my sob story. I get tired of myself these days. Yup, pain runs your life.

Did you know that as of right now, LDN is approved for thd off label treatment of only CRPS. Funny odd. But we need to fjnd doctors who actually know how yo prescribe it. She said she would break the capsules and take it that way. Also so wrong with any capsule and get the right dose.

Well, sorry to go on and on. LDN is one of those thjngs that yoy have to really commit to. No opioids and it can take 6 mos or more to help. I went off if it 2 years ago and it can help so slowly you can feel like it does nothing - until you go.off and realize two months later, if you put it together "oh. I guess it was helping." But its a long term commitment. I'm on for life. Ths way it helps regulate your adrenal glands, a pharmacist in FL who is truly an expert, has his whole family on it. People don't understand how it works tho and that less is more and don't start at 4.5mg. Unless you want to fail. Find a dr who not just prescribes it unless they have studied it. LDN has almost become a fad drug. I headd one person say they were on LDN and take 50mg a day. Eek.

But being willing to stop opioids for at least a year can be daunting for people who rely on it. I consider myself kind of lucky to be allergic to all opioids. Never an addiction to add to things. Thanks for bringing up LDN. I wish more dictors would study it before prescribing it.

Sorry so long. Lot to say aboot LDN! Helps me tons.