I want to start taking low dose naltrexone for my crps. I am pretty nervous and have a few questions before I start it. My first question is did it make anyone worse? I am trying to take back my life and am very nervous about anything getting worse then it already is. My second question is how did you guys get it? Did you get through your doctor or online? Prescription or no prescription? I believe i have read you have to get it compounded and I know some labs are better than others. So if anyone just has any recommendations on how to acquire this and if I should even bother then I'd be very thankful.

Hi Tata,

Biobased is our resident LDN taker and has done well on it. I was interested but my doctor is not on board with LDN yet so I don't have personal experience. Stanford University is currently studying it which gives the impression that it is worth pursuing. Side effects are possible with anything but there are recommendations on titrating LDN up to the common dose of 4.5 mg to avoid them.

While it is possible to get LDN without a prescription from online pharmacies my personal slant is towards medical oversight and known suppliers. When I was looking into it I found the easiest way to find out what doctors in my city prescribed it was to call the compounding pharmacies. They can tell you who is writing prescriptions for it.

BTW, I hope you didn't take any offense the other day when I mentioned your youth possibly affecting your interactions with doctors. That was not meant as a slight against you. I was thinking more about how your doctors might have a bias.

It all depends on your doctor. If the doctor isn't willing to prescribe it for you, in *your* case, then it won't happen. Who knows it might not even be good for you in your case. Every case is different, and every individual as well. Listen to your doctor. I believe you were prescribed gabapentin? Give that a solid go.

I know it significantly lessened my pain.

You really can't go around saying "I want this, and I want that". It's not up to you. You are not a doctor and can't judge what is best in your case.

Everyone's different.

Oh nevermind about the gabapentin.
I'm confusing you with someone else on here.
What does your doctor want to do for you?

on telling doctors what you want....

I feel this is okay to do. I hope that doctors treat us as a vital part of the care team and want our input. After all, we're the ones living in the body and need to have our ideas and experience respected. Patients often have firm desires/concerns about what they are and are not comfortable with. Feeling comfortable with your treatments is important.

If doctors disagree with ideas it could be from their clinical experience with a treatment but it could also be because it just isn't something they have tried with their patients. Not all doctors are current on the latest research and treatments or even things to avoid for CRPS. I respect my doctor's help and knowledge but I also like doing my own homework on what's out there.

Most doctors don't know about LDN. If you look up Dudley Delaney and LDN you will find information that you can bring to your doctors. But be prepared for rejection. Also, on his site he gives Crystal Nason's email. She supposedly will give you the names of prescribers in your area, I wrote to her twice, but never got the names, but just for full disclosure, I did get emails asking for donations.

Try calling compounders in your area for LDN prescribing doctors' names as Littlepaw suggests. I had zero luck with this tactic, but I hope you are more successful.

LDN is a miracle IMO. There are tens of thousands of people successfully taking it for many auto-immune diseases. It has few side effects, is affordable and is easy to mix yourself so you can control the dose you take, which is the way Dr. Bihari recommends.

Do not give up. This is your life. I sent you a PM, please check your in box.

I feel that you have to advocate for yourself when it comes to LDN and CRPS. Most doctors know so little as it is when it comes to CRPS that if it were not for us, the patients doing the countless research that we do to understand all that we are going through, they might not ever even look into medications such as LDN.

I was not able to find a doctor that was willing to work with LDN for me, but that is partly because my doctors had me on high levels of opiates since well before I ever heard of LDN. If you are able to find a doctor that is willing to work with you and your research and suggestions, then hold on to them and see if it helps. I like Littlepaw's and Bio's suggestion about calling around to compounding pharmacies. They may only be able to offer a few suggestions of doctors that might prescribe LDN, but it is someplace to start.

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?

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.

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.