What is Low Dose Naltrexone? Does it work for fibromyalgia? Today, I talk about the generic drug, LDN. I first heard about it because a friend of mine was part of the Phase II Study they were doing at Stanford. LDN helped her a lot. I did my homework, researched the drug, and decided to give it a try. It didn’t interfere with anything else I was taking, so OK, what the heck. In today’s blog, I talk about my first six months on Low Dose Naltrexone (LDN) for fibromyalgia.
Tuesday, June 21st, 2011, 3:31 am | 
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June 21, 2011 at 4:30 am
Hi Ace (continued) You mentioned night sweats. These can be caused by hormonal imbalance. I’m assuming you’ve had full bloodwork. Had your thyroid/hormone levels tested? Thyroid problems can mimic the symptoms of fibro, as can Lyme disease, (which I’m sure you know.) Iodoral is an OTC (non-prescription) that works well for symptoms like what you described, but you should get some tests first to be safe. Google Iodoral. Lots of info on all that. Good luck! – Diana
June 21, 2011 at 4:33 am
Hi Ace! (continued) I’m sure every doctor you’ve ever seen has already recommended this to you, but sometimes an anti-depressant helps with the symptoms of fibromyalgia. Personally, I found Lyrica made me fat, and Cymbalta just wasn’t for me. But, everyone is different. So, different stuff works for different folks. Others find that Wellbutrin works very well for their fibromyalgia-related fibro symptoms. Something to balance that norepinephrine imbalance. One other thing to try…
June 21, 2011 at 5:09 am
Hi Ace! Heart racing. Sweating. Is that a new symptom since you started the LDN? Or, a symptom that you’ve always had with the fibro? Anxiety (heart racing) is common in fibro, usually due to hypoglycemia. I found that I was completely gluten-intolerant. I can tolerate small amounts of sugar, but absolutely no gluten. I also avoid dairy, nitrates, sulphites, MSG, all artificial sweeteners. Most fibro folks also have a chemical imbalance (serotonin/norepinephrine)which causes anxiety.
June 21, 2011 at 5:44 am
Did you have any problems with heart racing and sweating on fibromyalgia? I am on 3 g, and I wake up often in complete sweats…..I also seem to have some heart racing problems. It does seem to help with pain with my fibro….
June 21, 2011 at 5:56 am
@freespiritjustsoul Hi FreeSpirit! Nope, took six months for me to see results. Although, the “vivid dreams” started in the first couple of weeks. So, be prepared that you might see some of those pretty soon. None of my dreams were scary. Just different. Your brain might be entering deeper REM sleep than you are used to. I have auto immune disease, and I am quite sure that the LDN has kept me from needing immuno-suppresive drugs.I started LDN three months after being diagnosed.
June 21, 2011 at 6:11 am
thanks for the video and sharing your story…I am starting the LDN for an ‘unknown auto immune degenerative neuroligic disorder” whatever THAT means
Anyway, I’m very thankful to know if it doesn’t immediatly turn my world to color, I should give it some time…Hope you are well, your son is beautiful!! Happiness to you!!
June 21, 2011 at 6:56 am
chec out my vid on supplements
June 21, 2011 at 7:45 am
I have a phone appointment with a doctor to get LDN next Wednesday. I like many can deal with the pain, but the brain fog or cognitive function kills me…if I can’t work, my family is in big trouble.
June 21, 2011 at 8:12 am
Hi Diana,
I was wondering…are you still using the LDN and how are you doing with it now? I also suffer from fibromyalgia. I rarely have any energy and my pain is increasing as time goes on. I’d like to find something with less side effects and not as damaging to my liver and the rest of my organs as most drugs are.
Could we have an update please?
Thanks!
June 21, 2011 at 8:22 am
I am a recovered fibromyalgic who left the care of the medical profession to discover the cause and cure for this horrific disease after 15 years of failed treatments. I understand this illness completely from the inside and back out again. Symptoms are often mistaken as a cause and what can help does not cure. Please, do not give up and keep going. See my You Tube video “Curing Chronic Fibromyalgia – Choosing What Works” and my best wishes to you all!!!
June 21, 2011 at 9:10 am
@cwcw111 Hi Colin! Great to hear from you! Yes, I am well, actually. I have a lot more good days than bad, these days. My headaches and back pain are MUCH better. Those were my two biggest complaints before, so I’m really happy about that. I still have muscle stiffness in my arm and legs and stuff, but I can live with that. Just getting all that back, neck, shoulder stuff under control is soooooo nice. I think it’s the combination of stuff I’m doing that finally is taking effect. – Diana
June 21, 2011 at 9:51 am
thanks for sharing Diana,,, i have fm too hope your well ,,,,,regards colin
June 21, 2011 at 10:07 am
I stil have problems remembering the date, even with the cognitive improvements.
However, my ability to write creatively has come back full-force. It hit around mid-December. I started on LDN in September. I keep worrying that it will all be taken away again, so I’ve been writing like crazy, every spare moment. It is so precious to me to be able to write creatively again, that I’m terrified the creative light will be snuffed out again. I’ll be in the darkness again. The fog. – Diana
June 21, 2011 at 10:55 am
Hey Diana. I have FM like you – for the last 15 years. I just wanted to say thanks for the video. I’m gonna check out LDN. (I first saw the Stanford video, then yours). Oh yeah, I also was very surprised that you said that you had mental improvements, since, in the very 1st part of your video, you reminded me of myself (and my “fibro-fog”) when you hesitated on stateing the date – looking up, as if to find the date inside your head. Ha.
June 21, 2011 at 11:11 am
Great video..I am on it for MS and wonders upon wonder…great to hear you are doing well xo
June 21, 2011 at 11:16 am
Great to hear from another writer! I spent an absolute fortune on chiro for 15 years. My muscle spasms have reached the point that the adjustments don’t hold. So, I had to either marry a chiropractor, or teach my husband how to crack my back. My husband learned. I do the neck myself.
June 21, 2011 at 11:56 am
Great video! I totally understand what you mean by saying, “if only I could get my brain back.” As a writer, I simply can’t seem to find the words anymore. I’ve had fibromyalgia since childhood, and have experienced a steady decline in cognitive ability since then. I’m currently working on a University degree, which is just… the hardest thing in the world right now. I’m not sure if/how I’m going to finish.
I have a question:. Since you believe it’s a CNS issue, have you tried chiropractic?
June 21, 2011 at 12:53 pm
Dear Diana!
How is it goin?
Do you suffer some of the typical side effects of those who take it against addiction- like stomach ache, muscle pain or headaches?
How low dosed is it? How many percent of the anti-addiction use is it round about?
God bless! I hope it keeps up your creativity and enjoyment of doing things!
Love, grace and peace to you,
Mikel
June 21, 2011 at 1:24 pm
You crack me up. I only mention opiate addiction because that’s what Naltrexone was originally used for as a medication. Using it for fibromyalgia pain, or for MS, is an “off-label” use. However, due to high pain levels, many fibro folks are actually on opiates, either Vicodin, Oxycontin, or the synthetic opiate, Ultram. Can’t take any of those with LDN. (Yes, the body recognizes Ultram as an opiate, no matter what their manufacturer might claim otherwise. None of those fly with LDN.)
June 21, 2011 at 2:10 pm
yea well i dunno much but im not a drugy lol if thats wut ur thinkin but i do need to look up the info and c thank u
June 21, 2011 at 2:12 pm
Hi Gargantuan- I like your username. Very original. I hear you about the social life thing. Went to a social event on Friday night and was feeling unwell the whole time. I couldn’t wait until it was over. I made small talk, and tried to smile at all the right moments, but, I sure rather would have been at home. It is interesting, though, how fibro manifests itself differently in different people. Maybe that’s one of the reasons it’s so hard to treat it effectively.
June 21, 2011 at 2:26 pm
Hello Snake- You bring up an interesting point. OK, because LDN stands for “Low Dose Naltrexone,” you have to look at what the drug actually is – “Naltrexone.” In it’s full dose form, Naltrexone was originally used to help drug addicts and alcoholics give up their addiction. It blocks opiate receptors, (this is when taken at 50 mg.) Fibro folks take only 4.5 mg of the stuff. It works differently for us. However, you can’t take opiate painkillers while on LDN. They cancel each other out. -D.
June 21, 2011 at 3:09 pm
Hey Jane! Great to hear from you! I can’t do flour or sugar either. Flares me up for days. I gave up chocolate this year. Amazing what one is willing to give up for the sake of feeling better. Now that I’ve given it up, I’ve totally lost my taste for it. Weird, because I used to love the stuff. Oh, article is not out yet. They want more photos, or to do a photo shoot or something. Hey, could you resend me the link to the one-year anniversary thing you did on SmileBox? I lost the email.
June 21, 2011 at 4:04 pm
that would be awasome if i couldnt feel pain but looks like a great painkiller
June 21, 2011 at 4:53 pm
Glad you are seeing results with LDN and that you are back to writing. I’ll have to look for that article in the Women’s magazine at the checkout. I’ll skip making the choc. cake as my fibro does not like flour and sugar, I’ll just pick up some dark chocolate and strawberries and make the most of my calorie intake. Keep making vids. Love the info as well as your positive yet real attitude.