I Haven't Been On This Site For Some Time. But I Am Currently Beginning To Take LDN As A Treatment For Fibro Pain . | MyFibroTeam

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I Haven't Been On This Site For Some Time. But I Am Currently Beginning To Take LDN As A Treatment For Fibro Pain .
A MyFibroTeam Member asked a question šŸ’­

Instead of Vicodin, my doctor wanted me to try this. I've been trying to get this to work for almost two months. I am curious about anyone else's experience with LDN. Can anyone offer some advice?

posted January 28, 2023
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A MyFibroTeam Member

Thanks for the info. I have 2mg capsules that I am working with. So far, the best dose for me seems to be 4mg, but that isn't saying much. I'm really struggling with pain control other than fibro. I wish someone would come up with a painkiller that isn't an opioid. All of the products on the market have not helped me. I'll do some more research on LDN.

posted January 29, 2023
A MyFibroTeam Member

Hi Sharlane, Good luck with that. I use ULDN or LDN because nothing else worked for me, and I have tried the lot at differing doses. What works for one of us doesn't necessarily work for others. I found that the LDN eased the pain but doesn't obliterate it - it is still there, daily. But not with the intensity, and it allows most nights for a decent sleep.
I have a lot of other medical conditions besides fibro, so cannot tell you honestly where the pain origiinates from just that there is severe debilitating pain. Maybe the LDN doesn't do a lot, but it helps me most days.
Hope you find something for your pain.

posted January 29, 2023
A MyFibroTeam Member

Hi Sharane, I have been taking LDN or ULDN for quite a few years now. I was first started on 4.5 mg (which is classified as LDN or Low Dose Naltrexone) and found that it helped me sleep, but not much else - and that sleep was often disturbed by quite vivid dreams. After researching (mainly Dr Genevra Liptan's books and utube) I reduced my dose to .5 mg which is classified as Ultra Low Dose Naltrexone (ULDN). I almost immediately noticed an effect - in fact the first dose I took in my kitchen, I was almost asleep before I reached my bedroom and slept soundly for hours.
Over the years I have found that for me I take .5 mg or 1.5 mg normally, and when it seems to stop working (as most medications do for us fibro people) I will stop taking it for a week or so, then start again, most times just with the .5 mg dose. This low dose seems to work the best for me, so to keep my body attuned to that low dose I titrate it up to 1.5 mg per day which I take about 7-ish each night so that it will help me sleep as well as not intrude on my daily life. I don't take the .5 mg dose every day, as I want to keep something in reserve for those days I need something stronger - and the smaller dose for me is the stronger dose.
If you want to try this, and already have the 4.5 mg capsules, what you will have to do is first get yourself an eye dropper which can measure either 5 ml or 10 ml. Then cut open the capsule and drop the powder into a cup or container and measure in 9 x 10 ml (or 5 ml) water, shake or stir this to ensure the contents are well mixed and dissolved. Then use your eye dropper and withdraw 10 ml (or 5 ml) of the liquid and you will have .5 mg of ULDN.
I now have my compounding chemist make my dose up into .5 mg as well as 1.5 mg capsules and make sure the filler is l-glycine as this amino acid crosses the blood/brain barrier easily and will take across with it anything else it is taken with, so your body will access much more of the LDN than without the l-glycine.
Your compounding chemist may not want to go to the bother of making up your prescription into these smaller doses, but mine is a gem, and actually charges me a lot less to make it up in the smaller doses.
Over the years I have found that ULDN or LDN is the only medication that gives me any relief at all, but doesn't alleviate all of the pain all of the time, but it certainly knocks it down a peg or two or three. You may need to experiment with your dose as Dr Genevra Liptan advises, and she is one of the experts in this field. Here is a link to her website -
https://www.fridacenter.com/
My sincere wishes that you find some help here.

posted January 28, 2023
A MyFibroTeam Member

Iā€™m interested also

posted January 28, 2023
A MyFibroTeam Member

Hi,
LDN is low dose Naltrexone. At a 50mg dose or more, it is used to treat addictions to opioids. At a much smaller dose, 4-6mg, it is used to treat various diseases like MS, fibromyalgia, and others. You can Google it to get more info. It's worth a search. I've been trying to get it to work for about two months, but I'm not sure yet if it is working or if the weather has been determining when I have fibro flares. I'm hoping to find some fellow LDNers on this site.

posted January 28, 2023

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