LDN Rx
 

I have had CRPS for over 17 years. I went to a neurologist last week and he diagnosed CRPS. I knew that 17 years ago!!! He said I had intractable pain and said goodbye. I had asked for Low Dose Naltrexone and he said no because it was off label. He had suggested Neurontin and it is for epilepsy so what is the difference? I had already tried morphine, Neurontin, lyrica, SCs, etc. I live in a rural area in western PA. Does anyone know of a Dr. who will listen to me and at least try LDN? Thanks for reading this.

Hi Mom2Pets

Welcome to NT. Sorry to hear of your long struggle with the pain from CRPS.

Regarding LDN - coincidentally I just took my first dose of LDN last night - unfortunately I'm in a different country to you - but it is also off-label here. I had to go to an Integrative Medical Doctor to get a prescription and then have it made up by a compounding pharmacy.

I'm guessing you've already done the research on how it might help with the pain from CRPS - sorry I can't help with personal experience here as I'm taking it to help with an autoimmune condition.

Here's a link to a report on the use of LDN with CRPS:

Treatment of Complex Regional Pain Syndrome (CRPS) Using Low Dose Naltrexone (LDN)

Another link you may find useful is this:

Low Dose Naltrexone | The Ultimate Resource | by LDNscience(R)

There is a 'Find a Doctor' database under the "PATIENTS" section on the scroll bar. I could only find 4 towns in Pennsylvania: Moon Township, Paxinos, Shamokin & Wayne listed. Maybe one is close enough to you.

Hope this is of some use. Please feel free to ask any questions - I have several other LDN related sites bookmarked and would be happy to send the links

I found that Neurotin helped with electrical pain, but I also found it gave me brain fog, which my doctor confirmed is a side effect.

After taking LDN for awhile I gradually weaned myself off Neurotin with no problems. I will never take it again.

If you do not have luck getting a doctor to give you a script for LDN you have the option of ordering it from abroad. Google Dudley and LDN, for excellent information.

Ldn
 

I took all the research I could find to my pain clinic and said I want to try this. And they let me. It took 5 weeks to work and then.... it was incredible change. I could get up and feel better and less pain. I occasionally have to go off of it for things like oral surgery and removing a toenail because of the pain and needing opiates but I always go back.

Take in the research let them see you did your homework. They will then have to send the script to a compounding pharmacy and then you can pick up or they mail to you. Start at 1.5 and work up to 3.0 or 4.5. Chopra talks a lot about LDN in on of his lectures on Youtube.

CRPS:Diagnosis & Management - YouTube

34:00 mins he speaks about LDN. Very long lecture but very informative and has helped me tremendously advocate for myself.

Goodluck. And always advocate for what you want! It is your body! :)

hi moms. i am sorry you've suffered with rsd for so long. i have never tried ldn so i can't help you with that but i have been on gapapentin/neurontin and pain meds since diagnosed with rsd five years ago. i have found that they have helped me manage my rsd pain a little better. i did have brain fog and dizziness due to the side effects from gabapentin during the first few weeks after taking it but the symptoms have lessend a little since then. i still have some brain fog and memory loss but find that it's worth it for me because it helps manage my constant rsd pain a little better. but everyone who has rsd reacts differently to the procedures out there for rsd. i hope that you find a dr that can help you find what works for you so that you start to feel better soon. take care.

When asking for an LDN prescription I was told NO WAY from many doctors. I would just get frustrated, start crying and tell them WHAT IF? So I called our Insurance co (drug provider) asked them for the nearest Compound Pharmacy that is in network. I called the pharmacy told them I have CRPS and that I wanted to try LDN and could they please tell me the name of the doctors that prescribe LDN.
It was that quick. The doctor is at the BEST facility and listened to me. He didnt know it was being used for CRPS but was totally ok with me trying it.
He gave me an rx for 3mg. I started it April 19. Although he doesnt treat CRPS patients he said he used LDN for his cancer, ms and fibromyalgia patients. In July I will be doing the 4.5 mg. Cost is 40.00 and that includes shipping.
This is the first doctor who listens and who was willing to let me try it.

Welcome to NeuroTalk!
 

Hi Mom2Pets,

Welcome to NeuroTalk! :D

I am sorry you have had to wait 17 years for an accurate diagnosis. :(
Now that you are diagnosed, I hope you will find lots of cooperation with various treatment options.

I have not yet tried LDN, however I will be requesting it in appointments this week and next week.

Lots of great resources/advice offered in this thread.

In addition to the sources mentioned here, in the video mentioned by Littlepaw in another post, Dr. Sean Mackey of Stanford talks about LDN:
http://www.neurotalk.org/reflex-symp...-stanford.html

Just for what it's worth: I am getting so much more understanding and help from my private practice rheumatologist than I have squeezed out of the neurology department of a teaching hospital in many years. As I understand this, rheumatologists are well-trained, well-positioned to diagnose and to treat CRPS. (They diagnose and treat some of the other conditions many researchers feel are similar in nature: fibromyalgia, CFS/ME/SEID, multiple chemical sensitivities, etc.)

I hope you find the cooperation/assistance you are looking for, pronto.

Again, welcome! :D

Love All Around! :grouphug:
DejaVu