I Did It My Way! One Year of Low Dose Naltrexone for Fibromyalgia

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

When I started taking Low Dose Naltrexone (LDN), I had high hopes- really high. My bar was little to no pain, dependable energy, and no more issues with foggy brain. At my one year anniversary, I will admit, it didn’t meet that bar. However, at this time, there just isn’t one treatment that does this for anyone living with Fibromyalgia.

What I can say is it has greatly improved my life. The significance of this one-year anniversary is that I was told early on that I wouldn’t see the full outcome until 6-months to 1-year of continuous use.

My LDN Journey Posts:

Low Dose Naltrexone image with quote block next to it describing how it works.

The Abbreviated Story of LDN

This will be a brief overview of what LDN is and how it works. My 1-month update gives a very thorough overview along with great resources to check out.

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What is Low Dose Naltrexone?

Naltrexone is a drug that was approved by the FDA in 1985 to treat opiate dependencies. The normal dosage levels to treat alcohol or opioid addiction is between 50mg to 100mg a day. At this level, the Naltrexone will block any of the “high” the alcohol or opioid would produce, helping with abstinence from addictive drug use.

Low Dose Naltrexone is a much lower dosage of 10mg or lower per day. For Fibromyalgia, the researched most dosage level is 4.5mg. However, the dosage is really variable in each individual’s body system and how they metabolize the LDN. One important point I want to emphasize is that higher dosage does not equal better results.

Dr. Ian S. Zagon discovered that using Naltrexone at these much lower dosages could help with a variety of issues. In 1975, he stumbled on its usage when searching for a way to hamper growth of cancer cells after seeing that babies born to mothers addicted to opioids were smaller and less developed. To off-set the effects of the opiods, he used Naltrexone (Naloxone, originally) at low doses to administer opioids to slow growth. In the end, he found that just the Naltrexone caused slowed down the growth of cancer even better than opioids. This surprising finding led other doctors to begin experimenting using it to treat other conditions.

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How Does Low Dose Naltrexone Work?

Research has shown that those living with Fibromyalgia have lower levels of endorphins (and possibly don’t process them like they should). Endorphins are the body’s natural opiate-like chemicals that are produced in nearly all cells of the body. Endorphins can lessen pain, increase good feelings, and influence cell growth (among just some of their effects).

For Endorphins to work, though, not only do you need it to be produced in enough quantity but they need to connect to the receptors on the surface of the cells. In my imagination, I see this like a docking station that is receiving its new shipment of nutrients. The connectors must fit between the two.

What Naltrexone does is bind to these “opioid” receptors, blocking them from connecting to the drug like heroine or alcohol to then stop the “high” they would produce. However, it also stops any of the body’s natural endorphins from connecting to the receptors while they are being blocked. Doesn’t sound like a good thing, does it?

That’s where LOW DOSE Nalrexone comes in. At the lower doses (again each person’s body metabolizes it at different rates), the opioid receptors are blocked for a few hours before it’s naturally excreted. The results of this short term blockage is amazing, and this is why it helps those with Fibromyalgia.

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LDN Rebounding Affect:

Once the LDN has been metabolized, the body has a rebounding effect. Basically, during the blockage of the receptors, the brain is tricked to thinking it’s not produced enough Endorphins AND doesn’t have enough receptors that are functioning at optimum levels. So, it goes on overdrive to remedy the situation.

  • It causes increased RECEPTOR production.
  • It causes increased RECEPTOR sensitivity.
  • It causes increased ENDORPHIN production.

This is the miracle. The body becomes its own factory of pain relieving chemicals!

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Rebound Duration:

The trick is to find the proper dosage and timing to have optimal duration of this wonderful rebound pain releiving effect. However, that’s the issue. Every LDN user needs to figure what works for them because every body metabolizes chemicals differently. It’s not a matter of just height and weight as it is for so many other drugs.

For many, the duration is about a day. That means that the LDN is only in your system for a few hours, which causes hours of relief from the time it blocked the receptors in your cells.

My Year’s Experience with LDN

I have found out the hard way that I am very sensitive to medicine. If you have Fibromyalgia, the chances of you being very sensitive to medicine is pretty likely.

While it is said that LDN doesn’t have any side effects, I’m assuming they are meaning that at the correct dosage for you, there isn’t. They also have a motto when starting LDN, “Go LOW and SLOW.” Suggesting start low (say 0.5mg) and titrate up every two weeks. Some can start at 4.5mg with no issue. I started at 2.0mg, and it was HORRIBLE!

I spent 3 days in bed: dizzy, headache, throwing up, not able to eat… However, I wasn’t going to give up. Luckily, my friend, Donna of fedupwithfatigue.com had been taking LDN for years and had some good knowledge for what to do. Also, joining the private LDN Research Trust Facebook group, I was able to find information that guided me.

Stopping for 48-hours to clear my receptors, I restarted at 0.25mg. Quite a drop from 2.0mg. Within a day, I felt like superwoman. It was last April, and I went out into the yard and raked leaves for several hours. I had energy, clear thinking, and low pain for three days. Then, it felt like the bottom dropped out for a few days. I have never gotten that perfect day feeling again, but I have to say, I have recently been having some days that are coming pretty close. See my post: Tentatively Esctatic! My Experience with Low Dose Naltrexone-Part 1 for more details.

Each week or two, I’d go up another 0.25mg. You are probably wondering how I could do this. The compounding pharmacist I was working with agreed after I told him my reaction to the 2.0mg start to make a liquid solution for me to up myself by 0.25 or 0.5mg.

I noticed that I dipped just before I needed to titrate up, which led me to feel that the dose wasn’t enough. The last few months of this year, I went between 3.0mg to 4.0mg to see if I could find what is known in the LDN chat groups as the SWEET SPOT.

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My LDN Sweet Spot

This past week, I landed on 4.5mg and have had a wonderful week. Yesterday, I hiked 8-miles with my hubby on the North Country Trail. By the end, I definitely had muscles locking up (despite stretching and resting along the way), and the pain was going up. I did an hour+ of myofascial release and come evening (and my night dose) the pain was back down to lower levels. My mood and energy never waned all day.

I’ve even been waking up in the morning feeling pretty good. Mornings have been the hardest part of my day. When I get up to go to the bathroom, I generally can tell if it’s a back into bed or make the bed type of day. I’ve had much less muscle pain and restriction. My joints at the elbows and inner knees have been more painful since switching to a split dose, though. However, the positive results of energy, clear thinking, happy mood, and lower muscle pain outweighs that problem for me to make any changes.

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Split Dosing for Fibromyalgia

A little over a month ago, I began to do a split dose. I did this because the rebound effect wasn’t lasting a full day. In my research, I found that taking it morning and night has been found to be more beneficial for those living with Fibromyalgia.

My thinking (I was at 4.0mg a day) was to take half of that at 9pm and then again at 9am. It was working better than just taking the 4.0mg at night. However, when talking with someone who is very experienced with LDN and then looking into it more, that isn’t the correct approach.

Because the LDN doesn’t stay in your system, it’s not like the LDN is adding on together to make 4.0mg when taken 12 hours a part. So, it is recommended to take the dose that best works for you (your SWEET SPOT) at both splits.

So, I started at 3.0mg for about a week. I’m now to 4.5 mg, and it seems like this might be it. I still am having the elbow and knee joint pain at about a 4/10. Also, I’m having more difficulty with getting to sleep, but am sleeping okay once I do. I’m going to give it a bit to see if that resolves and be more vigilant about my sleep hygiene routine.

“Individuals vary in their metabolic speed and this will result in inter-patient variation in the speed at which LDN is eliminated from the body, as well as the length of the rebound effect. Whilst a single daily dose of between 3mg and 5mg will be suitable for most patients, individual modification of dosage or frequency is sometimes needed.” via How Does LND Work

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Major Turning Point

I’m a little bit leery in saying this publicly. I’ve done that a few times before and had an immediate negative change in my symptoms. However, I just have to tell you about the last two weeks.

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A Day Back in the Classroom

I have been waking up with energy. My body isn’t feeling as rusted and filled with sand. I do my morning routine (guided meditation & therapy light) pretty consistently. But this is a noticeable positive change. This energy and clarity have stayed with me until about 5pm with lower levels of pain (2-3). But even when I feel the drop, it’s not been to the level of high pain (5-6) that I had been experiencing before the 3.75mg split dosing.

Image of me, wearing a mask, in the classroom.  Classroom sink, mailbox, door and back of student sitting at his desk behind me.

This Friday, I didn’t get to finish this post this morning as planned. But for a great reason. I was asked to substitute teach for my ex-team teaching partner. Boy, was I nervous committing, but I had a great week and really wanted to do it. My ex-principal and secretary, understanding my concern, worked out a back-up plan if I should need to leave early.

The crazy thing is on Tuesday, my husband and I hiked 8 miles on the North Country Trail. While I was definitely tired and sore after, I was able to do about an hour of myofascial release, and the pain lessened dramatically for the rest of the night.

Then, Wednesday, which would usually find me really worn out, foggy brained, and sore after a day like that, I felt great. In fact, I was able to go for my weekly 3 mile walk through the woods with my friend from New Jersey (talking over speaker phone).

Yesterday, I had two doctor’s appointments-one at 10:45am and the next at 4:00pm. Being both were in the big city and an hour from my home, I asked to have lunch at the school I had taught in (with my 6th grade teacher colleagues). It was wonderful. It was the first time I had stepped foot in the school since my last day of teaching on December 7th, 2019! That’s when I learned my colleague was taking a personal day, and they didn’t yet have a substitute teacher.

Can you tell that I’m near bursting with joy?!

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FULLY Living Despite Pain

As I mentioned, LDN isn’t the FULL resolution to Fibromyalgia issues.

After my day at school, I spent the rest of the night doing myofascial release, using the heating pad, and resting. This morning, though, I woke up tired and foggy brained. It’s a back to bed and take it easy day. It’s hard not to push it when you feel great.

But the day was worth the spoons I spent. Leaving teaching on a sour note due to my illness made me feel like a bad teacher, and being I spent 32-years of my life devoted to my profession, that really was a wound in my soul. This day of connecting with the kids and having them happy to have me brought me much joy.

LDN, along with my other self-care protocols, have brought me to a place where I can live FULLY despite pain.

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If you have specific questions about Low Dose Naltrexone, feel free to contact me. Also, I’m including several wonderful resources. The video talk with Dr. Ginevra Liptan gives great specifics from a doctor who understands Fibromyalgia and the use of LDN. I encourage you to at least investigate this possible treatment. It has allowed me to more FULLY live my life.

Further Information:

Sharing is caring- at least, that’s what my granddaughter says;)



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9 thoughts on “I Did It My Way! One Year of Low Dose Naltrexone for Fibromyalgia

  • May 3, 2021 at 1:38 pm
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    Thanks for this thorough post on LDN. It’s always been on my list as something to try, I just need to find the right doctor. I’m so glad you got a chance to substitute!

    Reply
    • May 3, 2021 at 2:38 pm
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      You’re welcome, Shelley. On the website ldnresearchtrust.org, there is providers both online and listed in areas around the country/world. I also, went into the LDN FB page and asked for one to be recommended. I found one (after my GP had already agreed to prescribe, though).

      Reply
  • May 3, 2021 at 3:00 pm
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    Katie, This was so wonderful to read! My heart is so full for you. I’m so glad you were able to go in and do that bit of subbing, it must have felt so good! I love how detailed you are about the LDN – both how it works and the process of finding the right dosage. It doesn’t sound easy, and I’m so glad to read that your persistance has given you such great results!

    Reply
    • May 3, 2021 at 4:52 pm
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      Thanks Allison 🙂 yes, it was really wonderful to sub and find out that the kids enjoyed me and I could have some good sense of humor all of which did not happen that last year just before I went on long-term leave. This year has been a lot like solving a puzzle for sure. I sure wish that there were more doctors who are educated about it shoes, but that won’t happen unless it becomes accepted for use in treating chronic pain. And that doesn’t seem to be something that will happen although more research is coming out as in the latest U of M research about using it in place of opiates.

      Reply
  • May 4, 2021 at 1:00 am
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    A thorough and well researched post on the benefits of LDN. Now if we could just get it approved as a treatment for fibro in Taiwan!

    Reply
    • May 4, 2021 at 9:29 am
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      Yes, for sure. I’ll ask Linda Elsegood if she knows anything about getting it more known and accepted in Taiwan. I know she’s been a big part of getting it known throughout the world and I’m doing volunteer work for her organization: ldnresearchtrust.org

      Reply
  • May 4, 2021 at 2:19 pm
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    I am so happy that you found something that helps you! Totally worth all the hard work!

    Reply
  • May 5, 2021 at 6:31 am
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    Thank you for sharing about this very important, individual experience, so that more patients and even doctors can understand it as a treatment for fibromyalgia and other conditions. I asked my doctor about it but unfortunately Singapore will never allow it I think, and also I can only take opioid painkillers plus am on antidepressants so might not be suitable for me. Really glad it worked out for you though!

    Reply
    • May 6, 2021 at 2:48 pm
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      Yes, each person has to figure out what works for them. Opioid pain killer side effects are worse for me than the pain.

      However, LDN can be taken with antidepressants with no bad interaction. Opioids and alcohol at high amounts gave contradictions as Naltrexone is an opioid antagonist. Even still, under careful doctor’s supervision some take Ultra Low Dose Naltrexone with some point of opioids.

      Reply

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