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.

We have to agree to disagree. My PM doctor praised me for "owning my disease." He said that the people who take charge of their disease are the ones who improve. Frankly if I had left it up to the doctors I saw I would be in pain trapped on aero bed in my den.

Btw, Aqua Therapy is one of my favs.

Hi Tata, I hope what you need isn't getting buried in here too badly. We seem to be getting a little off-topic.


CRPSbe,

Tata specifically asked about LDN as a possible treatment. We are supporting her by sharing what we know. I don't know why this offends If posts on this topic really bother you maybe it would be better to ignore them.

Yes, Bio raves about LDN. And why not? It has helped her tremendously and is a non-invasive, inexpensive, non-addicting, low side effect profile treatment with research behind its efficacy. I'm glad there is something positive for Tata to hear about it. I wish we had more treatments like this to hooray about.

We do talk a lot about different options. However, we have our own bias because if something is working for us it is often the result of a lot of trial and error. We are limited by being able to share what we know personally and what research we've encountered. Naturally the same things are going to come up again and again.

As for CRPS being "very" disabling. There is that possibility for sure, but the statistics support improvement in the majority of cases. I fully agree it is a difficult disease but I hope sharing our knowledge with each other helps us all achieve the best possible outcome.

Hugs to Tata and thanks (we get a little carried away sometimes)

That's why I think it's important to talk about all of it, to give someone options and *perspective*, even if they're "focused" on one thing. Which is not what was happening in this thread, so far.

I know a few people for who the disease was with them for the rest of their lives, and that is a handicap in and of itself.

For me it is very disabling, yes. I have it in 4 limbs. I mean... 2 are totaled and beyond repair, and for 2 help was in time and treatment was successful (but I still need to be careful and alert *every single day* as treatment goes on).

BTW, BioBased, thank you for the info on LDN!

Hi
I have bumped up the original post to bring this thread back to what the original poster asked about, and the thread is titled "LDN Help"

It's ok for members to have different opinions about different medications and/or treatments, but once that point is made, it is preferred please to move on if no longer interested in the topic.
The purpose of the forums is for members to be able to freely share their own experiences and information with one another, and offer each other support.
Here again are the forum guidelines:
Community Guidelines -- Updated 4/8/2015

Thanks.

My doctor suggested LDN and I agreed to try it. The first dose was very low and there were no side effects during this first month of treatment. Unfortunately, I developed some nasty gastrointestinal side effects when he titrated up to the next level and I had to stop taking it. I saw no improvement, but the dose was so low that I am not sure that improvement would be expected at that level. It did not make my CRPS worse, but again it was a very low dose. I am very sensitive to many drugs, but I will give new ones a chance because sometimes I can tolerate them.

My doctor prescribed this through a compounding pharmacy. Some compounding pharmacies have been under scrutiny for improper practices, so if you find one, I would google it and see if any warning flags popup. Perhaps someone knows a better way of checking out a pharmacy than simply googling them.

I personally would avoid buying this online especially if no prescription is needed.

Good luck with your search for the meds that will work for you.

Shay

In Belgium there's not even talk about such a thing as LDN. Maybe at the university hospitals, IDK.

We always lag behind in these things.

If I offended anyone by bringing other methods and treatments into it, I do apologize. No offense intended.