I’ve re-skimmed scientific evidence (20 pubmed-studies, most 2018-2020, the earliest 2009) and many forum posts here and elsewhere on LDN.
I’d suggest it’s nothing to plug too much, as evidence is very limited (too small studies) and some people are not helped by it or have quite some sfx;
but something to try, as the risks are low, it’s cheap, some are helped, there is also no evidence against it, some suggest that it stimulates the body to take over, so you can maybe reduce the dose after a time. (Can you?)
The newest pubmed-study (2021) agrees: “FM may also be treated with LDN. The main limitation of the findings was lack of a randomized control group treated with placebo.”
There are definitely more testimonials for it than “my” GABA.
The biggest impression I have from all the forum discussions everywhere is that the testimonials are so exuberant that it turns people off of trying it and that moderators often try to tone it down - similar to other topics with ardent supporters like guaifenesin or thyroid supposedly being the real issue behind FM, which also rely mainly on testimonies.
Thinking about it: That is one of the reasons for having shoved it off my list, which is unfair I spose.
Maybe if the testimonies toned it down, its image/repute would increase.
Just seen it seems fairly hard to get here in Germany. My local pharmacy has no clue. But I’ve found a pharmacy that compounds it and two docs that prescribe it. However 250-300mi away… And they do not seem trustworthy to me, they’re both exuberant about loads of non-evidenced treatments and ideas and one’s also a radical vax opponent and believes in indigo children and breatharianism.
Summary of all posts about it here on livingwithfibro.org: Ratio of 5:6:9, Better/brilliant : 1 Indi, 2 Sandi1, 3 T34FLYGIRL 6 mo, reported of 4 crynsugar & 5 MaryGrace, It helps a bit, sfx OK: 1 bluzarry, 2 reanselmo49, 3 fibroflare59, 4 fibrogal, 5 zelly, 6 Mariposa-1, worse: 1 carolyn, 2 Freedom, 3 capefibro, 4 linda8, 5 kitty1, 6 nmamommy, 7 Niki, no fx: 1 Rosellas, 2 suzie
This thead above is so long, but it’s only 2 people, plus Sharon’s caveats.
bluzarry03: 4.5mg no sfx, helps sleep together with 10mg melatonin(!) 4 months at this dosage. Higher: crazy sfx. Helped pain to a certain extent, but I still have flare ups and fatigue on a regular basis. 35$/m
ranselmo49: 3 months 4.5mg no sfx, clothes not hurting, still have fatigue, brain fog, random lightning bolts, and all sorts of other unpredictable things, most nights i get a good sleep and most days i am pretty ok until about 3pm. Not via insurance, 35$/m. Own understanding: Some have to go down or up a bit. “Neither the LDN nor the CBD are “pain meds” - they don’t reduce inflammation - they just fill up the receptors.”
Mod/Sharon: Sites claiming it cures everything makes it dubious.
fibroflare59: 1y, upped to 9mg, thinks it does help. and: it seems to help with the fibro pain. You should look into it.
fibrogal: 1wk. and here: have had great success … amazed how well this … has helped with my pain and sleep. and here: has helped me hugely… Both the low dose naltrexone and CBD oil have helped me greatly with my depression, anxiety and sleep as well as my chronic pain; I can’t say enough about both of these meds. and: noticed no side effects… I understand it doesn’t work well for everyone, but for me it , along with cbd and lyrica (and tylenol), has made a major dent on my pain and has helped a lot with my sleep. Subsequently (eventually), I have noticed an modest increase in my energy level as well.
I still take the other two, lyrica and cbd though! and: impressed, also (aside from pain) helps with sleep, and seems to also be helping with my energy level (probably because it helps with sleep).
Mariposa-1: 4.5mg 4mo, currently pain free, sleeping better (though still on sleep meds). My energy level has not yet … improved much. …if I get overly stressed I will have some fibro pain. I also began to take Lyrica 2m ago.
Nannyfor3: so. in fibro support group.
carolyn: Starting… 5th day… 21 days later: high dose of LDN 4.5 mg at 9 pm. I feel more pain than I did at the dose of 3, but doc says do this til Feb.
and “he wants me on 4.5 for at least 3 months and its getting really miserable.” One month later: “Pain doctor took me off LDN and put me back on the original Norco.” and here: I started the LDN at 1.5 mg, went to 3 and felt ok. now at 4.5 and lots of extra pain and ringing in the ears. I asked doc to lower it to 3, but he said no.
Freedom: tried LDN for a month and it didn’t help me. before that: I think the LD Naltrexone has helped some with the pain. I don’t wake up as often screaming in pain. I was doing that, maybe, 3 times a week?
Indi: somehow tricks your brain into creating natural pain killers. 8mo: pretty good apart from sometimes sleeping a little less deeply. And: LDN is the BEST thing I have ever tried!!! Its made more difference than everything else I have tried combined! It helps me sleep and means I dont feel achy in the morning and can go days without pain releif or massage. Before talking LDN I always felt horribly achy and sore in the mornings and had to take at least a mix of 9 different strong painkillers and needed at least one back massage a day. So it definitely help.
Capefibro: May retry LDN, probably went up too fast, worsened my FM unbearably. I was at 2.5 LDN when my fibro went off the charts, back to “normal” three days after I stopped. Actually, I would now think of taking LDN in early AM and suck it up until late afternoon to take a Tranadol, not ideal but doable. Tramadol is not exactly an opiate, works on different receptor sites than the ones LDN blocks. I couldn’t take LDN at night because I had two of the worst, vivid nightmares in my life on it, apparently a side effect for some. LDN, I started at .5 and went up .5 per week, probably too fast, until the day I was going to 3.5 and woke up with same horrific cranial fibro pains that got me diagnosed three decades ago but had gradually faded and been replaced by others. As I mentioned, they went away immediately after stopping LDN. I had those nightmares I mentioned twice when I started, taking before bed. I had no other positive or negative effects of LDN. Probably not a good trial, some people start even lower and stay on for months before going up, always hard to get yourself to do with no effect. I suspect there are subsets of FM and some nonresponders to LDN. Then: I worked up to 2.5 mg from .5 and then had a nasty reaction that worsened my fibro so I stopped. My symptoms quickly went back to their usual level. and Maybe I need a higher dosage!? I haven’t been able to get myself to try again even though the effect only lasted a few days. Depending on the fibro, I may try again. I’d hate to think some simple med could help. I did have to take in the AM, maybe not optimal, as I experienced vivid and unpleasant dreams when taken at night, perhaps the only adverse effect I’ve seen reported. If I had an M.D. with experience in dosing it working with me I’d certainly try it, I had to order it overseas on my own.
Sandi1: 2mo: helped me tremendously! She prescribed a 50 mg tablet so my insurance would cover it. I noticed right off the bat how it affected my mood! I woke up with less brain fog and really enjoyed my morning coffee. My head was the clearest it had been in ages and the burning sensation in my hands and feet were gone! I believe that it takes the edge off that all over pain, similar to taking a Vicodin or similar. My husband has really noticed the difference, as have my two adult kids. I was hesitant at first to try it but it has little to no side affects! I started taking the recommended dose of 4.5 mg and have lowered it to 3.8 mg, as in the beginning it did cause me to wake up more during the night. Not good, as I need my sleep! I know others have started at 1.5 mg and then increase it each week. That may be a better way to adjust to it. I started dreaming again and it has been great. I still have went through a few flares - and during them I wasn’t so depressed like I’ve been in the past. no withdrawal symptoms. … I started at 4.5 ml and I noticed that it caused me to wake up more during sleep. I lowered it every two days to where it doesn’t, which is 3.8 ml at night. Best time to take it is around 9 pm based on studies. That’s the only side affect I found, but I also take 2 sleep meds or I never sleep. … t relieves the buzzing in my legs and hands, as well as improves mood. Before taking I had no ambition to do things. This drug got me smiling again without having to take an antidepressant with lots of side affects! First post on it in Sep13:
tricky123: I’ve read about it, and the reviews are very subjective to say the least.
zelly: I found that although they did not give me as much pain relief as other meds they did teach me to pace myself as my body would just stop and not let me battle on through the pain, as I used to on the opioids as they used to mask everything even my mind. … Unfortunately after a year on the Naltrexone the rheumatologist said I had to come off of them as there is a risk of sudden death because of the build up of toxins in the body(oh my god ) … So now after six months back on the Naltrexone after my body had a rest from them, am now waiting for Botox injections… give it a go it may work for you… (no further posts)
Rosellas: I started taking LDN, Gabapentin, and Cymbalta a few months ago as my new pain specialist has advised. No bad reactions, but nothing is improving.
Freedom: It has helped some. I started on 1.0 mg. Now I’m up to 3.5mg. … He said if I don’t have any improvement at that dose, I never will. He said 50% of fibromyalgia patients have improvement with LDN. [JayCS: docs then mean “some”.] My LDN dose is at 2.5, and I’m working my way up slowly to the 4.5 mark. Similar here.
Linda8: 1.5mg of Naltrexone @ bedtime for four nights now. I have been noticing that I fall asleep better (also listening to my relaxation tape), and my head is a little clearer in the morning! … I have heard that people taking 3mg have intense side effects. I have not heard people taking more than 3mg. Then later: I have also tried Naltrexone for about 3 months and it did not do much but when I tried increasing it (doctor orders) to 2.5 mg…I became severely nauseous and heaving so I stopped it. as well as: I was on Low Dose Naltrexone for three months and it did nothing for my Fibro pain, and I think it may have caused my liver enzymes to elevate —that or pain medications–I’m not sure which.
Kitty1: I think the trick to LDN success is not having glaring side effects in the beginning. Some people are able to eliminate all other fibro drugs after being successful with LDN for about a year or so. Sounds like you could be on the way! Doesn’t work for me. Side effects are baaad pain. It doesn’t make sense, but my body said “no!”. I even tried taking half the stuff out of a 1 mg capsule and the .5 even caused it. My fibro doc said it doesn’t work for everyone. I know the LDN group on facebook has real good discussions. I learned from them that it really should be increased very slowly. So, you might want to go to 2mg and then 2.5, etc. The other thing is that every one seems to settle on a different dose. You will know. When starting: I started taking it a few weeks ago. I am still at a minimal dose, which will be increased in incriments, but am having great relief from it.
Two nurses: crynsugar, not only does she take LDN, but is also a nurse. MaryGrace is also a nurse and takes LDN, also this: crynsuger is our second nurse to sing the praises of LDN, Marygrace also swears by it, but then: Punkin2x74: Sugar. Please don’t take this the wrong way but we’ve been through this a couple times. Please do not post regarding LDN to me again. We have discussed it previously. My doctor and I do not feel in any way this LDN is beneficial for my chronic pain conditions. Nor does my doctor and his colleagues feel it is beneficial for FMS sufferers. Thank you have a nice day, as well as: It’s really frustrating when people try and make us think that they have a miracle cure. If there was something that miraculously worked out there we all would be on it. Sheesh!, and Kitty1 again: Hi Crynsugar. You have got me very excited. I see a new fibro NP in August. According to her web page, she prescribes and uses LDN. The research I have done on this drug since you began talking about it has proven very positive. [sounds a bit adamant.] and [that NP is Ginevra Lipton (book, website)]: She is 38 and has fibromyalgia.(New Doctor Tuesday - More New Meds? - #9 by Kitty1): She takes one thing at a time (I like that). Says with me we will start with anxiety and we will talk about LDN at next visit.
nmamommy: When I read about LDN I asked to give it a try. 6 months later and things are just worse. [However first high dose due to tramadol & morphine addiction.]
suzie: i did try LDN( low dose naltrexone) but i dont remember about it.
(T34FLYGIRL: I have been on 1mg of it for about 6 months…it has worked wonders for my energy. [But from this context it’s not certain which med she is referring to:]) however here it is: it has helped so much with my fatigue! It’s only been about a month that I have been on it but there is a noticeable difference.
[Nikki](https://forum.livingwithfibro.org/t/has-anyone-tried-low-dose-naltrexone/2001: yesterday I started my first dose of LDN … But I awoke with a terrible headache! and: The side effect I read about, insomnia, has been a problem. It’s not supposed to last though. I am going to try taking it earlier in the day, and work up to night time, when it is supposed to have the most benefit. Yesterday I was in a very good mood and had some energy. But when I took the naltrexone at night it messed with my sleep.
Healthrising has a lot on LDN, probably more balanced than elsewhere:
Click for details from Healthrising
LDN is one of the few things that I can say to people that the odds are pretty good that …(it) can reduce your pain. Dr. Ginevra Liptan – Fibromyalgia specialist. In the 2009 study “Once patients were off the drug, their symptom levels quickly returned. " " LDN has not been well-studied in either disease but [t]wo small fibromyalgia studies lead by Jarred Younger suggest LDN may be able to help some people with fibromyalgia. A 2009 single-blind crossover study found LDN significantly reduced pain, fatigue and stress levels. Intriguingly, a measure of inflammation called erythrocyte sedimentation level (ESR) predicted 80% of the responses. The fact that higher ESR’s were associated with greater reductions in symptom severity suggests that FM patients with more inflammation might benefit more from this drug.” “A larger placebo-controlled, double-blinded, crossover study (dose 4.5 mg/day) produced similar results: reduced pain, improved mood, and general satisfaction with life. LDN was helpful in reducing about 30% of the pain in about 60% of the patients.” " The first ME/CFS study – a retrospective study assessing the charts of 218 patients – found that about half the participants experienced some improvement in at least two more symptoms. A 2019 case report also fleshed out the experiences of three ME/CFS patients. An Australian laboratory study suggested that LDN may help with the natural killer cell problems found in ME/CFS.
Larger studies which assess the effects of different doses and different dose protocols and more fully fill out LDN’s effects are greatly needed. Younger’s Neuroinflammation, Fatigue and Pain Lab at the University of Alabama at Birmingham has a variety of LDN studies planned. The NIH, however, recently rebuffed Younger’s efforts to fund an ME/CFS trial and a trial involving dextro-naltrexone (see below)." “LDN is Dr. Nancy Klimas’ first-line treatment for the pain associated with fibromyalgia and chronic fatigue syndrome. She has found the drug to be effective and safe.” Information about how and where to get it. "Some patients start off at even lower doses (.25 mg/day), and some respond positively to much higher doses of the drug. One formerly bedridden woman who received mild benefits from the drug at 3 mg/day fully recovered from ME/CFS while taking 12 mgs/day… Adjustment to the drug can take more time than expected as well. The woman who ended up taking 12mgs/day of the drug at first topped out at 3 mgs but months later was able to significantly increase her dosage without incident. Jarred Younger: “Dextro-Naltrexone – The Next Naltrexone?” (Stanford, 2018; JayCS sez: interesting background stuff, but I’m wary that if Younger is just doing loads of pilot studies, then there is not as much behind it as claimed.) Further blogs and links to “impressive grassroots efforts”.
Click for even more details, FYI, summary: Bottom line I think: No "need" to plug this stuff especially. It may be worth trying, but it may have bad (s)fx. If you do try it, it sounds better to not keep to the 4.5mg dose of Younger's studies, even if docs have sometimes forced people to: I'd start with .5mg or if possible even less and increase slowly, finding your own dose: that may be part of the "secret". Apparently even small differences in dose make a lot of difference. The people it was helping were taking 9mg, 3.8mg or 1mg (Reminds me of getting a 2mg melatonin ER pill prescribed and breaking off 1mcg bits (5%) - and that still being too much for me, almost the same zombifying effect as the 2mg ER or the 1mg without the ER.) I'm disconcerted that Younger's studies from 2009 and 2013 did not find any of the harsh sfx quoted above!
Ha, interesting. I actually caught myself getting carried away by the idea of a miracle cure… really, I was thinking: Wdnt it be great only having to take LDN, leave the 13 supps, the hours of self-treatment and treatment behind me… Oooooh yessss…
So, I went another route first, was getting really into it and interested: First: It’s very hard to get here. My pharmacy can’t get it for me and I can’t get it from any pharmacy via my usual online pharmacy price comparison portal, up to now I’ve “only” found one compounding pharmacy far in the South that said it does it. Maybe there’s a compounding pharmacy closer, not sure how to work that out. One on a forum got it from “overseas”, but warned they wdve preferred a doc to help them. Someone else got the 50mg pills prescribed by their doc and tried quartering, but that was still too much - there might be a workaround there.
The compounding pharmacy I phoned and asked how best to get a prescription willingly shared the name of a doc who’d prescribe it. I’d also found another doc who does. Both also in the South. However both come across on their websites, on youtube and on a doc rating platform as emotional, exuberant, naturopathic/alternative, evangelizing (is there a better word?) and polarizing. Whilst the first compared herself to US functional docs, her methods & explanations are far off into the esoteric areas (e.g. photon therapy), her main med for FM is guaifenesin ( not LDN), she “knows” her fibromyalgia was caused by Lyme disease, explains everything oversimply, “knows everything”, has many exuberantly positive ratings, but also many who describe her as chaotic, unstructured, not able to adequately explain when questions are asked. some of her explanations are good, some fanciful/weird. The other one is a radical vaccination opponent, gives a speech on a demonstration about a pediatrician who was charged with waiting too long before a baby was taken to a clinic cos of malnutrition. That pediatrician believes in indigo children, that the measles virus is not responsible for measles and “breatharianism” (we could nourish ourselves from sunlight alone).
Now I’m definitely not at all saying that the people/docs who advocate it are all like this at all, but it started me wondering if a) the evangelizing exuberance causes the polarizing and if the people who do this are susceptible to LDN, because it is a bit nonconformist & a bit mysterious, and perhaps also they are having a strong placebo effect (which is good for them), or praps the other way round.
So I was interested not in what a pro-LDN website had to say, but first one FM-forum. The result isn’t catastrophic, but sobering: Of 20 people 5 (25%) found it pretty good to brilliant (some of these loved exclamation marks…), 6 (30%, together 55%) found it helped a bit along with other things, and sfx were OK, however 7 (35%) found the symptoms got considerably worse , either immediately or after about a month or so and 2 (10%, together 45%) “had” no fx at all (one of them cdnt remember any).
3 of the 5 people who found it good had been on it for 2, 6 and 8 months - I wdnt rule out that they didn’t post any more, because they were feeling too good. It didn’t work for the only man amongst them, FWIW. One person was narked about how much one of the main proponents was plugging it and asked her to refrain from doing that.
The main doc/writer I’ve now seen using/prescribing it is the fibromite Ginevra Liptan.
A good neutral link I found along the way was once again healthrising, using the positive words “an impressive grassroot movement” for LDN proponents.
The other side to that is the way LDN proponents often tout it, saying “check it out”, “look into” and “spread the word”, someone wrote “worsened my FM unbearably” “the reviews are very subjective to say the least” which in combination with the aura of a miracle cure (cured, all symptoms) makes it tough to hear and not nice. OK, it is nice to get some hope first, like me yesterday, I was flying a bit, “what if?” - brushed my usual skepticism aside a little, but I don’t mind playing around, and I was guessing I’d be finding a bit of a snake pit (is there a better one?). Esp. when so many people are having a tough enough fibro-life and then people do try it and it gets worse … and just to make sure why I say snake pit, I quote: “its getting really miserable”, “worsened my FM unbearably”, “I became severely nauseous and heaving” &“I think it may have caused my liver enzymes to elevate”, “6 months later and things are just worse”, “Side effects are baaad pain”. The upside of this is, you can just stop it, without even weaning it off and these effects stop quickly.
Some said that LDN catalyzes your body to produce it’s own pain killers or similar, so you can reduce it, but others you have the same pain if you stop it (e.g. the 2009 study), so it seems it’s fogging over and not curing. One of the healthrising summarizes about Younger’s 2013 study with 31 women “LDN was helpful in reducing about 30% of the pain in about 60% of the patients.” which sobers up the implication that it can reduced 100% of the pain in 100% of the patients. I don’t think my slipshod forum testimony statistics contradict those findings of Younger’s studies (he’s at Stanford by the way), but I’m disconcerted that this study did not find any of the harsh sfx quoted above. Also on healthrising it was implied that it your FM maybe mainly has an autoimmune component (seemed to be found in one of the studies), then the likelihood it might work might be higher. I also get the feeling that maybe a mood component makes it more likely, and that if works on one part of fibro - if all the other symptoms come from that, it may work a bit ‘miraculously’, but we are too different to bet on that.