10.16.2015

Using low dose naltrexone for fibromyalgia

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Note: The following story details my experience with using low dose naltrexone for fibromyalgia. This story first published in Fibro Flare magazine’s October 2015 issue (pages 23-25) It is reprinted here with permission from the editor. 

Low-dose naltrexone is an exciting, emerging treatment for fibromyalgia. It performs just as well or better than the three drugs currently approved to treat fibromyalgia in the U.S. and with minimal side effects.

Like others, it took several years and many doctors’ visits for me to be diagnosed with fibromyalgia. By the time I was diagnosed in early 2014, I was relieved to finally have a name for the mishmash of symptoms that I’d been experiencing for so long.

I didn’t know much about fibromyalgia back then. I naively thought that I’d take a pill every day, and it would make my pain, fatigue, brain fog and other symptoms go away.

But that’s not what happened.

My rheumatologist initially prescribed gabapentin. It helped to relieve my pain, but I couldn’t stay on it because it made me too sleepy during the day to work. He switched me to Lyrica, and my pain level increased off the charts. When that didn’t work, he prescribed amitriptyline, an old-school antidepressant, hoping it would help me sleep. It did make me drowsy, but not much else. Then I tried Cymbalta, one of the newer antidepressants approved for fibro. I had to stop taking it after two days because it just made me feel jittery and weird.

By this point, nine months had passed, and the only thing these drugs had done was to help me gain 40 pounds. I was still in pain – even more so from toting around all of that extra weight.

I was beyond fed up. And it was on one particularly miserable day that I typed the words “fibromyalgia what works” into Yahoo’s search engine.

I was desperate to find something – anything – to relieve my symptoms. Near the top of the search results was a link to a patient survey on 23andme.com, showing low dose naltrexone (LDN) as one of the most effective treatments for fibromyalgia. I had never heard of LDN, and I instantly started researching it. In 1984, the U.S. Food and Drug Administration (FDA) approved LDN as an opiate antagonist to treat addiction to certain opiate drugs.

So, how does a drug for heroin addiction help fibromyalgia? When taken at low doses, naltrexone enhances the body’s immune system by boosting the production of endorphins and encephalin, the body’s own natural pain killers.

Early research has found LDN to be useful in reducing the symptoms of certain autoimmune and central nervous system conditions, including fibromyalgia, multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.

Two small Stanford University studies showed LDN was comparable to or outperformed all three drugs currently approved to treat fibromyalgia in the U.S. And best of all, it reduced the symptoms of fibromyalgia with minimal side effects.

After reading this, I sent my rheumatologist the research data on low dose naltrexone for fibromyalgia and asked him for a prescription. Given its long safety record as a drug for addiction and its low risk of side effects, I figured he would be happy to write the prescription since I’d been one of his most difficult-to-treat patients.

I was wrong. He rejected the idea, saying the drug wasn’t approved by the FDA to treat fibro.

That sent me on a mission to find a physician who would prescribe low dose naltrexone for fibromyalgia. I contacted my local compounding pharmacy and asked for the names of doctors who previously wrote LDN prescriptions. I made an appointment with one of these doctors and was again shot down. The doctor’s assistant explained that he didn’t prescribe low dose naltrexone for fibromyalgia.

I’d read online that there were doctors who would prescribe LDN after a phone consult. Thanks to the nonprofit LDN Research Trust and members of an LDN facebook group, I was able to locate a doctor in New York (U.S.) who does LDN phone consults. I paid an out-of-pocket fee, and within a few minutes, I had a six-month prescription for LDN. My LDN doctor was available to answer any questions I had after filling my script.

As recommended, I titrated up slowly to allow my body to adjust to LDN. During the first few days, I had headaches and insomnia – two of the most common side effects associated with LDN. I also had nausea. But as the days passed, these side effects gradually disappeared until I didn’t have them anymore.

What I did have was less pain. Prior to LDN, I had a lot of what I describe as voodoo-doll pain – that stabbing, shooting, take-my-breath-away nerve pain that sometimes comes out of nowhere. I also had the more typical all over achiness and soreness.  After being on LDN for a few weeks, the voodoo pain mostly disappeared. I wasn’t as achy. My brain fog is pretty much gone.

(LDN didn’t change my fatigue level. For that, I turned to the supplement D-Ribose, and more recently, Sam-E.)

I’ve read testimonials from fibro patients in LDN facebook groups who say it changed their lives – that it completely eliminated their pain and restored their energy. My experience was much more subtle. LDN wasn’t a life-changer for me, and it’s not a cure.

But it has noticeably reduced my pain and helped me get through my days easier – without the nasty side effects associated with many of the other fibro medications. For me, it’s been better than any of those other drugs that my rheumatologist prescribed.

Another plus is that since it’s an older drug, it’s very reasonably priced. According to the LDN Trust, a dose ranges in price from 50 cents to $1 (£.33-.65). My three-month prescription in the U.S. costs me just $60 (around £39).

I wish more people knew about low dose naltrexone for fibromyalgia, and that’s why I’m sharing my story in case it can help someone. Fibro is so hard, and we all need hope. LDN did that for me.

Click here for a helpful list of LDN resources.

Update, Oct. 16, 2015: The story above was written when I was still taking LDN. I am no longer on it due to switching doctors and starting a new treatment protocol, but I am still and always will be a great supporter of LDN as a treatment for fibromyalgia. If my new protocol fails, I will be returning to LDN because it helped me when nothing else did.






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Comments

  1. Jean Gabriel says:

    Has anyone tried marijuana oil to treat fibro and chronic fatigue? Please let me know at my personal email address: jeangab759@gmail.com.

  2. Rhonda Miller says:

    Good morning, my name is Rhonda and I started taking 1.5 mg about 5 weeks ago at night for undiagnosed CFS.
    On the second day, had an immediate rush and at least 50 % reversal of my extreme fatigue which is my main symptom.
    This lasted for about a week then I changed to an am dose because of worsening sleep disturbance. After a couple of days I noticed my energy would drop drastically around 10 am so returned to pm dose and increased to 2 mg.
    This appeared to correct energy levels for a few days but the dropped again so decreased back to 1.5 mg.
    Still have poor sleep and energy is erratic.
    Please advise should I increase or decrease?

    • Hi Rhonda, I’m not a medical professional, so I wouldn’t be able to comment on whether you should increase or decrease. There are two facebook groups that might be helpful. Here are links: https://www.facebook.com/groups/108424385861883/ and https://www.facebook.com/groups/LDNRT/
      Both groups have lots of helpful people who are very knowledgeable about LDN dosage. They were a great help when I was just getting started on my LDN journey. My own experience is that nighttime dosing caused me to have sleep issues. A few months in, I switched to morning dosage, and it seemed to work the same for me.
      I’m so glad to hear that it’s helping, even if you’re still trying to pinpoint the perfect dosage.

  3. This is interesting. I wanted to try LDN but when I brought it up with my GP you would have thought I had asked him to sell his soul. It’s just not prescribed here. Well, that’s not strictly true. There is one doctor who does and you can pay for a phone consult but something in my gut doesn’t feel right about a 10min phone call with a doctor who doesn’t know me to get a prescription. It’s interesting you say it doesn’t help your fatigue, as I had read it can help some people with their energy levels and sense of wellbeing– which was my primary reason for wanting to try it. I don’t need the pain control so perhaps it would have been pointless for me anyway 🙂 thanks for sharing

    • admin says:

      I’ve heard mixed results as far as LDN and fatigue. For some, it seems to really, really help, and for others, like myself, it did nothing. Like everything else with fibro, I guess it just depends on the person. No one really knows unless they try it. The LDN Research Trust (which is based in the UK) has a list of LDN-friendly doctors on its website if you ever change your mind about wanting to try it. They were a great help when I was researching it and trying to find a doctor.

  4. Marti Murphy says:

    I quickly gave up on finding one of my drs. who wanted to help, so I order the 50 mg tablets from the River Pharm. in Canada. They also are very helpful on answering questions. I dissolve one tab in 50 ml. distilled water. Using a baby oral doser, I take (now) 4.5 ml. per day at bedtime. A whole year costs about $100, and I order a year at a time. You are correct—it took away my migraines and body pain quite quickly, but not great on fatigue. Also be sure to take a full amount of D3 (I take 10,000 units/day) as advised by a compounding pharm. friend.

    • admin says:

      Yes, I’ve heard of people buying and dissolving the 50 mg tablets on their own. People need to be careful about the source because there are a lot of unreputable online pharmacies. So glad LDN has helped you!

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