Question from a member: Does anyone know anything about LDN (Low dose naltrexone) Has anyone used it for Fibro?

*I have been on it for 3 1/2 weeks. So far no improvement, but I still have high hopes.

*here is info on the ms society website and whilst it's not Fibro specific obviously, it will probably be able to help.
MS Research

*more recent update: More Recent update

*My daughter-in-law's mother works at a pharmacy. She said they had been getting a lot of requests (it is compounded) and feedback from patients saying they had gotten good results from it.

*When I go to my doctor this week, I'm going to talk to her about it.

*I was going to ask my rheumy about it, but never did. you have to make sure you are off all of your opioid drugs before you can take it, since its a drug designed to help people get off of heroin. I have an article somewhere on it, ill find it for you.

*It was patients with Fibro with the positive feedback! The doctor has to write a script, it is compounded.

*ME/CFS BLOG

*What LDN has been used for

*Who is lucky enough to get opioid drugs? Where you guys from? UK?

*I've been on it for two or three years. You have to go to a compounding chemist that makes it up from the pure stuff and doesn't just crush revia tablets.
The revia tablets apparently are slow release and you need it to hit all in one go so that you get your stage four sleep. Before I started taking it I was waking up in the morning not able to move I was so stiff and sore.

It took a while to adjust and the adjusting period wasn't nice (nightmares, feeling worse, bad sleep etc), but I hardly ever feel that bad in the mornings now. I tried to go off it recently at my doctors suggestion because he didn't think it was working any more ( I knew it was but it's so expensive I thought it was worth a try) and I felt so bad even after a few days that I went back on it as soon as I was able to.

Within a few days I felt better. It's not a cure-all but it certainly helped me get moving in the mornings a lot better. I really think it is worth giving it a go. Aside from the initial getting used to period I don't think I suffer from any side effects from it. 4.5 milligrams (gradually getting to that dose helps) seems to be the optimum dose.

I'm in Australia and it costs me over a dollar a day to be on it and as much as I struggle financially I am willing to pay the costs for the benefits I get from LDN. They do have a website you can check out. It is most useful apparently for people with Crohns and MS, but it does help a range of illnesses.

*I started @ 4.5 mg one week ago, and my response is wonderful. I've had more energy in the last week than I've had in years. I noticed a change by day 3.

*www.LDNscience.org is a new website. I brought the report of research from Stanford to my doctor and asked for a Rx. It can take a while to get the dose adjusted.There's a lot of discussion about LDN on Patients Like Me. Search LDN

*I'm really pleased you asked this question, this is my mission for this week to find out more about this drug. Certainly causing a bit of a stir!! xx

*Problem is, it causes bad insomnia.

*You take it when your tired, as your head hits the pillow. It increases endorphin production in 2-3 hours. I take Melatonin, Valerian and Benadryl an hour before bedtime. I plan to stop the Benadryl in another week and see how I do.

*Does anyone have a good solution to sleeping through the night? I have tried many things, still wake up every 2-3 hours. I'm exhausted! Dr just shrugs it off, calls it insomnia, but hasn't given me anything for it. Don't need anything to make me gain wt, I can do that on my own thanks. I'm already on morphine, cymbalta & clorazapate. I NEED A GOOD NIGHTS SLEEP!!

*Get you some xanax and trazodone. You will sleep with it, if you don't something's wrong.

*My DR. has given me elavil, it has helped a lot with my insomnia and also helps with migraines too!

*I take 100 mg of Trazadone at night, I have xanax but don't need it with the Trazadone

*Been on LDN for 3 weeks now with zero change unfortunately. I am really at my wits end. I had a sleep test to and the doc was really insightful - said I am not sleeping well because of pain. WOW. REALLY? I could have told you that??

Then he sent me back to my rheumy. Rheumy said well that's the nature of FM and you don't really want anything
stronger than lyrica do you? So his answer was to increase my zoloft (which also had zero effect). I am up all night, then I sleep all day. What kind of life is that.

Sorry to be a debby downer, but I am beyond frustrated.

*Trazadone.

*I was put on lyrica 6 months before my Dr acknowledged and documented the word Fibromyalgia in my medical records. He put me on lyrica for diabetic neuropathology. I have since had 3 dosage increases to the maximum. 450mg per day its worked great for me for a while. It is said it is believed Fibro is the result of over active nerves. I completely agree with that statement.

when my nerves are on edge I have more pain n tenderness. I have since been put on muscle relaxers n klonopin I'm feeling less tension in my muscles and my nerves are calmed down. for sleep on I'm on ambien when needed.

if you take it every night it loses its effect. I alternate the ambien klonopin and muscle relaxants at night for sleep. last night I slept 8 hours for the first night in over a year. I'm from USA

*I used to be up all night and wouldn't be able to sleep more than a few hours, which turned me into a zombie! The gabapentin helped with the restful sleep but not the insomnia.

I decided to wake up at 7 every single day, no matter how much sleep I'd had or how exhausted I was. It has really helped me get to sleep at a more normal hour. It's worth a shot for you insomniacs. Takes a while and you feel dreadful in the meantime but I am sleeping 100 times better than before! x

*I think I feel bad enough, I work 4 hours a day 4-8:30 PM so I cat nap during the day. I would rather sleep in snatches then put up with ONE MORE THING!. Not screaming Just frustrated. Morning is the worst possible time for me to do ANYTHING. Need wooded hiker pole to get out of lounge chair which is also my bed, No strength to push foot rest down, much less get up without tipping over onto something. No more testing any thing for me. I am at my limit! I am from North Carolina. USA