Help please with LDN / Low Dose Naltrexone

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Oct 16, 2010.

  1. karynwolfe

    karynwolfe New Member

    Can you help me figure out how this works?

    I feel I would be a wonderful candidate for LDN. As far as I know I have to talk to my doctor about it, get a prescription for the doses, and then take that prescription to a compounding pharmacy (have already located one) to get it filled in those doses... Is that really it?

    What I am also wondering is, what do you take for pain?!

    I rely on hydrocodone, which I know I cannot take while on LDN, as it is opioid-based. But what else is there for severe, incapacitating headaches? I cannot go to the ER every time I get one of these (which is every week, at this point in my illness), so what do you all take for severe headaches while on LDN, what has the efficacy of opioid pain relievers?

    Thanks for any input,


    (also, if you know any suggestions about how to talk to my doctor about this...? i assume I'm supposed to just give her some information, or maybe send her to the website? i'm a newbie as far as this but I really, really want to get this ball on the road, as they say)
  2. mbofov

    mbofov Active Member

    You've got it right - you do get a prescription from your doctor, get it filled and you're good to go. You may have to play with the dose a bit to get it right.

    If I were you I would print out information from website to give to your doctor.

    I have CFS, not FM, and no pain to deal with, but I tried ldn hoping it would boost my immune system. Unfortunately I did not tolerate it very well - it made me spacey, hard to describe. But I do know it has helped other people. I think it's worth a try, the "science-based medicine" website notwithstanding. "science-based medicine" has done very little for people with CFS and FM (most "science-based" doctors don't even believe CFS is real) and for the most part we are left to our own devices.

    I can't help you with headaches, sorry. Hopefully someone else will respond with more info.

    Also, I think Yahoo has some ldn boards. Check them out, someone there may be able to help you more. Good luck!

  3. karynwolfe

    karynwolfe New Member

    Thank you mary =)

    I will actually ask another of my support groups about this LDN, thank you for bringing that up

    But I hope others reply here as well.

    I am similar, in that I want to try taking it for my M.E., not fibromyalgia. I figure either it will work or it won't, and there's no harm in doing a few month's trial, especially if this is something that has the potential to help. It's a lot better than wondering "what if it would have helped," and I'm not afraid to try. =)

    I was going to wait until I got some other things out of the way before exploring this option, but I'm realizing I don't have that luxury anymore.

    I agree with you about the sciencebasedmedicine website.

    LDN works similar to opioid medicines because it binds to the same receptors, as far as I'm aware (which is why you cannot take opioids with it), and I'm hoping the LDN can give me some of the same unusual results that taking hydrocodone does: I only need to take a small dose to provide pain relief because I am very sensitive to those types of things, and time and time again, I notice the days around when I need it, I am better in general. Not motivation or moodwise, but physically. I know of several other people with M.E. who are experiencing similar results from LDN--slightly more energy, increased mobility, and improved cognitive abilitities--and I hope to have that happen with me as well. (They're on another board, so thank you again for reminding me!)

    The kicker came when, yesterday, I was able to walk normally, after needing (NEEDING) my cane for mobility three days straight, due to muscle weakness. Not only that, but I was able to sit up and everything; I even read a book for a while! I was in shock, because otherwise I am 90% bedbound, in bed at least 22 hours a day, and now I HAVE to know if Low Dose Naltrexone could possibly give me the same improvement, by exerting a similar effect on my body's chemistry.

    If I do get to try it, I will keep the board updated.

  4. proteinlady

    proteinlady New Member

    Go over to the yahoo LDN fibro group. There are some with ME/CFS there as well. There have a list of files with lots of good info in them including a list of what you can't take. There are also many there with ME/CFS. The group is helpful and they have a lot of experience with LDN. I've been on LDN with some success since May. I am still titrating up to a 4.5 mg. At low doses naltrexone upregulates opioid receptors and results in an increased production of endorphins. It is the increase in endorphins that produces the effect and not the naltrexsone itself.

    I would not recommend having any old compound pharmacy fill your prescription. The fillers matter. I would suggest that you at least consider one of the recommended LDN pharmacies.

    This site has some good info and a list of pharmacies:
  5. simonedb

    simonedb Member

    karyn too beat to type up long reply but do a search here I wrote about it like 1-2 yrs ago here when i tried it for 6 months

    was on propoxyphene which is similar to hydro what yr on and i needed to wait a good 2 weeks to let it out of my system cus the ldn gave me power headaches and antisocial feelings beyond belief at first but once system all cleaned out it did help with pain, not a lot with energy, about the same as when on propox which also helps with energy

    ultimately in spinal flares ldn didnt work well enough for me so went back to my old plan
  6. karynwolfe

    karynwolfe New Member

    okay simonedb, thank you for the advice =)

  7. karynwolfe

    karynwolfe New Member

    thank you proteinlady, I will ask the pharmacies about that filler, I have three compound pharmacies around my area so one of them is bound to able to avoid the calcium-thing that the website recommends staying away from

    Fillers ARE important; for instance I cannot take olive leaf extract that has cellulose as a filler, not only does it degrade the potency but it gives me crippling stomach pain

    i would look into the LDN group but ME and FM are very different and react very differently to medications so I'm not sure if that type of information would benefit me... maybe I can try and just see about the ME/CFS people you mentioned

    thanks again =)
  8. karynwolfe

    karynwolfe New Member

    Sorry it didn't work for you, jam, but thank you for the advice =)