Low Dose Naltrexone

Posted by Suz @db72, Jul 19 11:34am

Hello. I’ve been on Low Dose Naltrexone (3 mg) for 10 years that was originally prescribed for my arthritis, ME/CFS (Chronic Fatigue Syndrome), and fibromyalgia which I’ve been disabled with for 39 years. But, I also have severe axonal large fiber Polyneuropathy (plus autonomic PN) which has progressed over the past decade to where I use a motorized chair when I go places. I am 73 and housebound due to both the ME/CFS and PN. I have fallen badly several times.

That said, I have not needed additional pain medication though my neurologist prescribed gabapentin, which I refused for fear of side effects and habituation.

My pain is very odd in that my parathesias are strong vibrating sensations in my legs that often wake me up at night. Breathing exercises lessens them. Walking is very difficult because my legs feel like lead weights, I trip often, and my balance is awful. I also get sharp stabbing pains sometimes throughout my body along with other assorted irritating sensations, but overall the pain part of it is nothing I can’t handle so far.

I know that LDN has helped many people with neuropathy and that it is used with great success for many other types of pain syndromes. I have tried twice to go off it (it is not addicting) and both times my back and muscle pain returned within a few days. I know LDN doesn’t work for everyone but it’s been a godsend for me.

I don’t know if my neuropathy would become unbearable were I to go off LDN, but I don’t want to find out as I cannot tolerate the side effects from other drugs.

So, I just wanted to share my story in case anyone here is in search of a safe alternative medication that has basically no side effects and isn’t too expensive. (about $30 a month from the compounding pharmacy). For more info the LDN Research Trust website has lots of info for both patients and prescribers.

Oh and btw, LDN also helps with mood which is extremely challenging having both ME/CFS and PN, and I’ve been able to steer clear of antidepressants.

Interested in more discussions like this? Go to the Neuropathy Support Group.

I saw this post yesterday.

I have iPN - not currently on any prescribed pain meds.

I happened to have a routine followup appt with my pain doctor today so I asked about LDN. The pain doc said she could prescribe it for me if I asked, but didn't seem too excited to do so. For now I'll hold tight. My issues are more about numbness versus pain.

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Profile picture for gregoria @gregoria

I have SFN and suffer from neuropatic pain both legs and also arms. I am on lyrica and amitriptiline, but my pain is increasing since It started 5 years ago..and this condition in are occasions gets better. Is LDN really effective in reducing pain?? my internist said he can prescribe It if I like it. but he has told It helps with fatigue but not as much with pain reduction. And none of them reduces inflammation.
He has told me that we can also switch medication to duloxetine ..I have burning pain mostly unbearable ..maybe due to some autoinmune cause since I have other stuff going on, but so far nothing much found..any experience with burning pain and LDN?

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@gregoria I think your Internist may not be well informed about LDN as it is known to be effective for inflammatory diseases.
It doesn’t help numbness, but it does have the potential for pain. I have severe axonal sensor motor neuropathy and arthritis and LDN is the only thing I take for pain. Here’s more info about its use for inflammation and neuropathy. It doesn’t work for everyone, but when it does it’s a godsend. Given that it’s inexpensive with no significant side effects for most people it’s worth a try.

Best wishes!
https://ldnresearchtrust.org/low-dose-naltrexone-pain-management-and-inflammatory-disorders

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Profile picture for Suz @db72

@gregoria I think your Internist may not be well informed about LDN as it is known to be effective for inflammatory diseases.
It doesn’t help numbness, but it does have the potential for pain. I have severe axonal sensor motor neuropathy and arthritis and LDN is the only thing I take for pain. Here’s more info about its use for inflammation and neuropathy. It doesn’t work for everyone, but when it does it’s a godsend. Given that it’s inexpensive with no significant side effects for most people it’s worth a try.

Best wishes!
https://ldnresearchtrust.org/low-dose-naltrexone-pain-management-and-inflammatory-disorders

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@db72
Thank you!!! I Will give It a try, I have an appointment in March.

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Profile picture for gregoria @gregoria

@db72
Thank you!!! I Will give It a try, I have an appointment in March.

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@gregoria you’re welcome! Good luck!

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One would think/expect that a pain doc would know about LDN and consider trying it before anything invasive. When I inquired of several medical folks who might be in the know a couple responded saying that we don't prescribe that medication.

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The doctors you are referring to are not informed or interested in attaining the knowledge necessary to prescribe LDN. My doctors are at University of Miami, Mt Sinai as well as pain clinics in both hospitals. Check this link out for more info:
https://ldnresearchtrust.org/sites/default/files/2020-04/Dosing-Info-a4_0.pdf
Bottom line is that works to reduce pain neuropathy pain dramatically.

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