LDN seems to be the new treatment for fibromyalgia. Naltrexone is primarily used to help people get off of opiates but they found in low doses it helps with fibromyalgia pain. I’ve been on it for almost a year now and I think it does help. There is a few things about it like you have to find a doctor who will prescribe it and you have to get it at a compound pharmacy. Also if you do have a flare up you can’t take any opiates for the pain it will seriously mess up your stomach. But overall, I think it’s working and it worth a try if anyone is interested.
I use a low dose of tramadol, so guessing could not try this…
By low…i mean 1/4 of a pill…otherwise i get side efffects…so it does not get rid of pain but takes the edge off…tylenol would help, but makes me sleepy…
Having medication sensitivity is difficult with chronic pain😊
This is Carlita, what is Naltrexon. I’ll have to look it up. There are some medications that I cannot take due to other disease processes. It’s good we can shout out if there is some new treatment.
Thank you
I just started low dose naltrexone a week ago! Lmd, I don’t think tramadol is an opiate so you could try it. So far, I have noticed a change, certain chronically painful areas in my body feel more relaxed and less painful than usual. Also, I feel more relaxed.
Stanford pain management center prescribed it for me, and finally gave me the FM diagnosis, which I’ve figured out I have had for 4 years or so. You actually can be taking opiates anyway with it (they told me), only it is best not to take the opiate within a couple hours of taking the naltrexone because the naltrexone may make the opiate not work. It is probably best if you don’t tend to take pain meds a lot (if you want to take naltexone), I have gathered from what Stanford told me and from the little bit I’ve read about naltrexone online. The medication is a low dose and so has to be made up (compounded) by a pharmacy, and Stanford told me they only know of one pharmacy that compounds it, it’s in Colorado. Insurance doesn’t cover it, but it wasn’t too expensive. Stanford gave me a 3 month prescription (they said I would know by 3 months whether or not it would work for me, anyway, I live far from there) and I think the 90 days of pills cost me $48. which included shipping. Stanford said that since I am one of the FM patients that also have chronic fatigue in addition to chronic pain, naltrexone may be more likely to work for me. It doesn’t work for everyone. I looked Low dose naltrexone (LDN) up online today and learned that Stanford has done studies on using it for chronic pain patients. It is interesting to learn how they think it works: Stanford said it helps relax the central nervous system (brain and spinal cord) and pain nerves, then I read online that it they think it helps decrease chronic pain by reducing inflammation around the pain nerves.
I am so glad I went to Stanford! If the med works for me (and I think, knock on wood, it is starting to work!), my primary doctor up here in Northern Cal will probably continue to prescribe it for me (Stanford is writing him a letter explaining FM and LDN). Yay. For once, some good news regarding this difficult FM “journey” of mine (and of so many others). Feel free to ask any questions, I may be able to answer a few or maybe not. Really glad to hear it is probably helping you Fibroflare59. oh, my dose is 4.5 mg; I read the window of dosage is between 1 and 5 mg (don’t quote me, it’s about that though). Also I forgot to say, it is supposed to help with sleep! And I think it is starting to help me with sleep as well. There is some stuff online I haven’t read yet, such as the Stanford studies.
I’m so glad you are trying the LDN. It has worked for me but I have upped my dosage to 9mg. Which you can do if you need to. Good luck and I’m keeping my fingers crossed for you that you find relief from these terrible painful and tiring symptoms.
I was diagnosed with fibromyalgia 16 years ago. I started using LDN (4.5 dosage) four months ago and am currently pain free. I am sleeping better (though still on sleep meds). My energy level has not yet (I am hopeful) improved much. I do notice that if I get overly stressed I will have some fibro pain. I also began to take Lyrica about two months ago, but am not sure if it is beneficial as I was already getting a lot of pain relief with the LDN. My doctor strongly emphasized that I had to be off the pain meds for a full ten days before starting LDN which I followed. I hope this will help others.
Mariposa,
That is AMAZING you are currently pain free with your fibromyalgia, with use of the LDN, that certainly is hopeful! I will report that I am in even less pain than when I last posted here a few days ago and that the LDN is helping me deal with the negative side effects of the long acting adderall I’m taking for depression, and the brain fog and fatigue of FM. I don’t yet notice an improvement in energy level but am still hopeful. Interesting your doctor emphatically said you had to be totally off pain meds prior to starting the LDN; Stanford did not.
Jean
Lmd and others,
I forgot to say I found out that tramadol IS technically an opiod. Sorry I said otherwise, I was mistaken.
Jean
Any compound pharmacy can make it…we have one in a town 12 miles from me that one of the ladies in my fibro support group gets hers from. I wondered that about still taking pain meds with it. It’s such an incredibly low dose in comparison to what they use for addiction.
It’s opioid-like. It’s a schedule 4 medication but it actually is very different from opioids. But it’s classed the same.
Naltrexone isn’t one of the medications approved for the treatment of Fibro in the US. That said, there has been a bit of research which suggests that it might be helpful.
In the “did you know” department, Wikipedia informs us that "Naltrexone is a medication primarily used to manage alcohol or opioid dependence. An opioid-dependent person should not receive naltrexone before detoxification."
Interesting stuff.
Seenie
1 Like
I have been on cortisone shots and Norco (narcotic) for 15 years. the cortisone gave me severe osteoporosis (i knew it would but was desperate) My GP and spine dr. have thrown up their hands and sent me to a new Dr. He has given me LDN, and there is a compounded pharmacy in Lincoln, Ne. 30 day supply is $52 as FDA does not recognize it, so no insurance company or GoodRX will cover it.
I am on my 2nd day without any Norco and a SO miserable. I easily went from 10 Norco per day to 4. Then to 2, but getting off the 2 has incapacitated me.
Really hoping the LDN helps because I have never been one to sit and lay around, and there is no way I can drive or shop or even prepare a meal.
Carolyn here again, after thanksgiving and drug free 7 days, so tonight am going to take my first dose of LDN. Praying it helps. it can take 14 days before doc increases it to 3 mcg, wish me luck !!