Connect
Low Dose Naltrexone
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Low-Dose Naltrexone Offers New Hope for Pain Sufferers
https://www.psychologytoday.com/us/blog/full-catastrophe-parenting/202204/low-dose-naltrexone-offers-new-hope-for-pain-sufferers
-
Like -
Helpful -
Hug
1 ReactionGabaPentin didn't do squat for me so I'd have a hard time getting addicted to something like that. I'm on Lyrica/PreGabalin now 75mg twice a day and I don't feel like I get any kind of euphoic boost from it. Possibly with heavier doses tho. I will mention the LDN to my pain doc as a recursor to RF ablation.
-
Like -
Helpful -
Hug
1 ReactionLDN has worked for me over the past three years. It got rid of the pain but does nothing for the numbness.
I can’t imagine living without it.
-
Like -
Helpful -
Hug
1 ReactionThat’s so encouraging to hear! Same here, damage is still there , but no unbearable pain.
I took because the rheummy I was going to couldn't dignose me even though I had consistantly high labs and it did wonders for my Crohn's. For me, it is good for the "non moving" pain but not "moving" pain. I'm a fan and have been on 2mg for 6 yrs. No side effects as far as I can tell.
-
Like -
Helpful -
Hug
1 ReactionFrom what I read here I don't understand why more doctors don't prescribe LD Naltrexone for pain. Do you suppose it is more profitable for them to prescribe very expensive new drugs like Cymbalta? I have tried several of the new "wonder drugs" and have had adverse reactions to all of them. I won't take any drug that ha been on the market less than 10 years. I used to take Midrin for headaches, including migraines, but it was taken off the market because there had never been clinical trials that proved it was effective although millions of people had taken it successfully for years. Shortly thereafter, all these new migraine drugs hit the market. Every person is different and may have different reactions to a drug. My husband has no problem with 2 drugs that cause me to have severe reactions.
I’m sorry you’re dealing with so much, but glad you found LDN - and someone to write you a script. When my rheumatologist first wanted me to try it, I reached out to a pain management specialist for an appt. They asked what it was I needed, said they’d “review my file” and then said they’d get back to me. A week later they called back and said unfortunately the doctor couldn’t help me. I couldn’t understand why and called my doctor back. My rheumatologist explained that some of these pain management doctors only want to schedule appts where they’ll give shots or procedures as they can charge the insurance much more for a cortisone shot than they can for a script so they won’t book those kinds of appts. I remember being really angry that I wasted a week and was still nowhere. My rheumatologist is now licensed to write her own LDN scripts for her patients because of that! So for anyone else, if you call a pain management doctor who wants to call you back “after reviewing your file” with the doctor before they’ll book you an appointment, now you know the score. Keep making calls meanwhile!!
-
Like -
Helpful -
Hug
2 ReactionsIn theory a pain mgmt doc should be the most qualified to write such a script and should be willing when everything else has essentially failed. A year ago last October, I essentially started over from square one trying to get some relief from my current lower back pain. Went to Sports Med and was punted to pain mgmt and from there to PT and back to pain mgmt. The amount of time wasted between appts with nothing to show for it is disheartening. How anyone can say that a burning pain which has its focal point at or near the top of the pelvic bone is nerve pain is astonishing. Unless there is a nerve which is running through there and being pressed on by a muscle, I don't get the connection. I know what the MRI and CT scans indicate, but to me the pain doesn't seem to be consistent with those findings, esp. since I had similar pain for years before my L1-L5 lumbar procedure.
Frankly, I wish some docs would read through some of these stories and post anonymously about what they think is going on.
I would add that for years I have been battling CVI and my PCP is a vein specialist. Some months back I was told that I was essentially SOL for any relief. My problem is quite evident to anyone who can see the characteristic discoloration of the skin that it causes. Finall in late July they did more ultrasound testing and now there is an endovenous based procedure that can be done, but first I need to have a ABI. That is done in cardiology and there is a 2 month wait. Just more delays, they never end.
-
Like -
Helpful -
Hug
2 Reactions