Any reason why LDN is so "popular" here all of a sudden? I feel like it's almost being pushed.

I mean, I know it's "new" and all, but... really? It's a pain medicine, right, not something that improves the CRPS. And there are plenty of other options in that regard. And everyone is different!

I've been on Neurontin and buprenorphine patches + sublingual buprenorpine since 2004. These things have tackled my pain tremendously well. I do have my moments where the pain breaks through, but the sublingual pills take care of that pretty darn well. I do have a remnant of pain, but nerve pain is difficult to truly get rid of.

Nothing can be done for my legs anymore, but I knew that. It was far too late for any kind of treatment (not that doctors didn't try and give it their all, because they *did*, you betcha).

My arms, different story. That was early stage and was tackled with calcitonin pretty well (I react favorably to that medication).

Anyway, what I want to come across is that it is DIFFERENT for everyone, and it's like LDN is just being pushed forward as "the answer", and I don't like that - at all.

Just wanted to get that off my chest.

CRSPbe,
I am not sure why you are concerned about LDN or do not like it. I will continually advocate for it, because I have been able to avoid a host of drugs, interventions. I know that the combination of LDN and Aqua PT saved me from life in a wheelchair, permanent allodynia, drop foot, dystonia, floppy ligaments, tendinitis, hammer toes, mind numbing pain, inflammation, being ice cold 24/7, etc.

FYI LDN is not a pain med by any stretch of the imagination. LDN is not symptom control either. It works by getting the body to heal itself, a novel modality. Watch the Joseph Wouk videos on You Tube. Or read what Bihari and Chopra have to say about it. Joseph Wouk
- YouTube
Treatment of Complex Regional Pain Syndrome (CRPS) Using Low Dose Naltrexone (LDN)

It was stories like yours that literally scared me into searching for alternatives, because I could see where CRPS was taking me, so I am eternally grateful that people generously shared their time, pictures and stories.

Yes, I still have pain, which is probably from the CRPS osteoporosis I have, but unlike the pain I had before I was diagnosed it is bearable. I am for the most part medication free and reclaiming my life inch by inch. Should I stay silent, when I know what worked for me, lest it upset someone? Should I have opted for a lifetime of pain management medications, instead of seeking a way to heal myself?

That's not what I mean. There is such a thing as talking of your own experiences. That's absolutely fine, but just trying to get everyone on board with the LDN, to me, is being a bit pushy. Like I said, not everyone's the same. And LDN might not work for us all.

Didn't they do all they could do for me? Yes. They did. And I am left with a disability, have been for 21 years now. Nothing more can be done, and it is not reversible. This is my doctors talking. Not me.

You don't know me personally, so that's one thing. You can't possibly come out and say, well if you just take LDN you'll be fine. Or took LDN you'd be better off. See. That's not up to you. And that's what I'm getting at.

Because it works for you, might not mean it will for someone else. I'm just trying to be a little conservative on that part. That's all.

And there is nothing wrong with how CRPS is being handled still for the most part. It is just a *very* disabling, and difficult disease.

Yes, we are all trying to find what works for us, but that doesn't mean LDN is the "hallelujah" for us all.

CRSPbe,

It may be too late for you, but I have no way of knowing this, but I do know it is not too late for others. LDN may or may not work, but it is worth a shot. It helps more than 80% of those who use it.
What Others Are Saying About LDN
I think these odds are pretty good, but I have never once said that it will help everyone.

Feeling as you do, may I ask why you bothered to post on an "LDN help" thread posted by a new member who asked for advice about it?

In retrospect I think I am lucky that doctors did very little for me, because I had to help myself. I was also lucky to have a supportive husband and encouragement here. My view is I will preach to whoever will listen, because if I help just one person my pain journey will have meaning.

True.

I don't know. I felt like every answer to every question for help here lately was "LDN" this and "LDN" that. It just bothered me a bit. As there are plenty of treatments for RSD/CRPS out there, all equally valid. Why aren't *they* discussed as well?

Oh dear, perhaps you missed that this is an LDN specific thread. Tata asked about LDN.

I am aware of that. But it's always good to note that there are alternatives. And my point is, it is up to doctors to decide, not for patients to demand. Besides the fact that we need to be advocates for our own health... it still is up to your doctor.

What I am getting at is many doctors know so little about CRPS and the many treatments that are more recently being used and researched. We, as the patient need to bring new ideas to their attention sometimes or some opportunities that may, or may not help, could be passed up, whether it is LDN, IVIG, Alendronate and other bisphosphonates, Ketamine, or anything else. Doctors, just like most people, have a tendency to get stuck on doing things a certain way. They should be open to new treatment ideas, should be willing to listen to their patients and work with them instead of just sticking with something that worked for one patient at some point in time.