Tentatively Ecstatic! My Experience With Low Dose Naltrexone Part 1

I was in a painful flare and starting to get desperate. Although mindfulness and meditation help, I felt like I couldn't continue to push through.  I cried. Hard.  Sobbing and shaking. Which isn't great when you're already in pain.  "This is too hard!"

My husband calmly said as he caressed my hair and massaged my temples, "You can do this.  You are strong."

The next day, I messaged my general practitioner. He's been very supportive, albeit not very familiar with Fibromyalgia (as are most doctors). I decided to finally ask if he would prescribe me Low Dose Naltrexone (LDN). After reviewing my request and the link to research on the topic, he tentatively agreed to give me a month's dose, stating that the research, while promising, was small.  When I responded (via messages through MyHealth.Spectrum.org) thank you, I would like to try 2.0mg dose.  He was a bit flabbergasted. "It's only sold commercially in 50mg tablets. Do you know how to get that low of a dosage?"

This is when my online Fibromyalgia support team has been essential.  Through my research and their input, I knew more about LDN than my doctor. I first learned of LDN from Donna, on her website Fedup With Fatigue.  She gave me a bit of guidance on the dosing and titration that she followed because I knew the 4.5mg was a general ending goal, not a starting point. She also gave me a wonderful resource of knowledgeable people all finding their own way with taking LDN via the Facebook group: Low Dose Naltrexone for Chronic Illness and Infections. Brian Haviland, the administrator of the group, and several members have given me good information on how to proceed. 

Starting Dosage

My general practitioner has no experience with LDN dosing (because this is off-label for Fibromyalgia and most other issues it's being used for-more on why below).  I sent him research reports on the topic and he then wrote a 30 pill prescription for 4.5mg. Being it has to be filled at a compounding pharmacy, I had them send it via fax to a compounding pharmacy in the city about an hour away from us.  As kismet would have it, the pharmacy technician that I spoke to, had been taking LDN herself for a while to help her manage Lyme disease.  She was very positive about her results. She was the one that suggested that I go with 1/4 the dose. So, I began at 1.125mg.

How to Adjust LDN Dosage Level

Due to LDN being commercially sold at 50mg tablets and even the low dose level many get compounded not being the level the individual can handle (like mine of 4.5mg), those who are in the know have developed an ingenious way to adjust dosage level.

Here's what I've done (on guidance).  I put 4 ounces of distilled water (ml is fine, too, but I live in the USA, so...😉) into a jar like the one shown above.  I opened the 4.5mg capsule and poured the contents into the water.  I, then, stirred to dissolve it, letting it sit a bit, covered in the refrigerator before taking it the next morning.  

In the jar, at the bottom of the solution are white particles that don't dissolve.  These, I've found out, are the filler in the capsule.  I asked the compounding pharmacists what type of filler was used in my capsules.  He responded, "Avicel.  It's a filler with low allergy issues." I'll talk more about fillers in future posts in this series on LDN because this can be important.

To get the dosing amount you want, you have to do a bit of math.  With 4 oz of water added to 4.5mg of LDN, if I take 1oz of the solution, I am getting 1.125mg (4.5/4).  However, you could have 4 cups of water and drink 1 cup for the same 1.125mg.  Make sense? (Thanks, hubby/math-guy for the lesson.)

Click this link for a larger view of the

 chart created by Haviland 

LDN Facebook Group Administrator.

My Initial Reaction

Three days in and it became apparent that I had too high of a dose at 1.125mg.  This is definitely an individual thing, and one has to find their own path with the information given by others.  Some can start with 4.5mg and have no side-effects from the get-go.  Some, can start at 2mg and bump up every few days until they get to 4.5mg.  (I will be explaining that while 4.5mg has been the treatment level most researched; it's not the optimum level for all people.)

Feeling terrible, I stayed in bed
for 3 1/2 days straight.
Cold packs on my head and the back
of the neck helped some.

And so, I was not going to fit into the "normal reactions" group (surprise, surprise). I was so dizzy, weak, nauseated, and a contraction type of headache at my temples and forehead.  For 3 1/2 days, I was in bed.  I threw up several times (which is difficult for me to do because I had the Nissen procedure of GERD that created a knot at the top of my stomach) and didn't even want to drink water.  I was ready to give up.

Luckily, I had the FB LDN group.  They gave me encouragement and advice. I decided to press on. 

I really am appreciating
all the support and advice
I've gotten prior and during
this first couple of weeks.

One suggestion that I latched onto was to take a day off to "clear the receptors" and then, start back up on a MUCH lower dose of 0.25mg.  And this is what I did.

I still felt horrible all the next day (day 4) without taking any LDN.  The following morning (day 5), I wasn't nauseous anymore but was very weak and tired.  With the words of supports in my head and the knowledge that if I don't push through I will never know if it works for me, I took 0.25mg.  

To do this, I dissolved one 4.5mg capsule as described above, but this time, I added it to 9oz of distilled water.  I then took only 0.5oz of that solution, carefully drawing off from the top as to avoid getting any of the Avicil filler that was resting at the bottom of the glass jar.  The math for this is 4.5/9=0.5mg per ounce/2=0.25mg.  

It was a grey day outside, so I gave myself the grace to lie around one more day.  I meditated lying prone in bed and fell asleep on and off until 4pm in the afternoon. And then, it all passed.  I felt as if a switch had been turned on, I had recently watch Back to the Future and envisioned my reaction to being much like Marty Mcfly's coming back from nearly fading away into nothingness.

Much like Marty, I was not able to function,

and then, wham! I was back!

Who is This?

That night around 8pm, I got a burst of energy.  I cleaned up the kitchen which had a pile-up of dishes, folded the laundry that had been sitting in the dryer for a couple of days, and finished writing my first post in a series I'm planning to write on teachers and stress. My husband, who had been working hard all day putting up drywall, was winding down on the couch, reading.  He looked up as I was scampering around the house. Smiling, he said, "Who is this? You're feeling better, I see."  That night, I struggled to fall asleep but wasn't feeling bad about it.  I finally drifted off around 2am.  

I've come to appreciate the
utter love this guy gives even
when it means I get woken by
a wet nose every morning.

Around 6am, Scout, my tiger cat began his ritual of nuzzling my ear, then cheek, then hovering close enough to my lips that I can feel his breath on them.  My husband had already gotten up, so I was there alone for Scout to pester until I was fully awake.  This is early for me.  7:30am is my goal time for getting up and around, but Scout wasn't having any of that this morning.  And to my surprise, I woke up alert.  I was able to bound out of bed pretty quickly, feeling very little pain and stiffness that I normally have every day.

I was able to complete some blogging work, straighten up the house a bit, and when my husband asked if I wanted to go for a hike in the woods, I had the energy to say, "Yes!"  We went on a four-mile hike.  The sky was blue with white clouds and the forest world seemed as if it was awakening from the cold of winter, finally. It felt so wonderful to be outside, hiking, talking with my hubby, and having next to no pain.

Getting out into nature
is my healing place,
especially now that we're
warming up and getting
some sunshine.

I had two more AMAZING days like this.  My mood was up, my energy abundant, very little pain (until evening, but not bad-level 4). I was able to get myself ready (shower and even a bit of make-up), practice yoga and meditation, straighten up the house, practice my guitar, socialize with Zooming and a bit with the neighbor (at safe distancing), rake up our shoreline of layered wet, oak leaves, and then still have the energy to sit in the hot tub with my husband. To top things off, we had a warm-up to 55o and sun which is a commodity that's fairly rare right now in Michigan. These were three AMAZING days for sure.  

Each of these three nights, though, I struggled to get to sleep.  I didn't feel agitation or racing heart or anything, but I felt clear-headed and alert.  I ended up taking THC oil (2 drops sublingual) and with meditation, I fell asleep decently at midnight (headed to bed at 10pm) and slept until 7:00 (when Scout begins to wake me up). Each of these awesome mornings, I woke up feeling clear and energetic.  My pain was noticeably more intense and in more areas than normal (Level 5+). However, not long after taking my 1/2 oz LDN solution, it diminished to a level 2+.  I was ecstatic at how I was doing and couldn't stop telling everyone. This, I feel, might bring me back to a level I didn't think would be achievable.

The end of my raking the
shoreline day,
it was sunny
 which made me
even more joy-filled.

When researching more about why and how this works, I found an explanation that made sense for all these improvements. "The major mechanism of action of LDN involves blocking the body’s opioid/narcotic receptors for just a very few hours (rather than the all-day blockade caused by the 50mg dosage). Those are the same receptors used by the body’s endorphins. The body responds to this by greatly increasing its endorphin production, and those higher levels last all day -- far after the blockade by LDN has ended. Endorphins turn out to be the major normalizer/upregulator of one’s immune system," states David M. Gluck, MD in My Experience with Low Dose Naltrexone.

Tentatively Ecstatic

After a three-day wonderful weekend, Monday morning came with more pain and a feeling of fatigue. Taking in that I had done a decent amount physically over the weekend, I chose not to be discouraged.  Besides, I know that at 0.25mg, I'm not yet at my personal "sweet spot" dosage level. So, I took it easy: blogging work, Yin Yoga with Bernie Clark via Gaia.com. Tuesday and Wednesday of this week were pretty much the same but less fatigue and more clear-headed. 

Today, I skipped my 0.25mg does as they suggest to clear the receptors. "It makes sense to skip a day of LDN every week to keep it working effectively. Otherwise, naltrexone and its active metabolite 6-β-naltrexol will slowly build up in the system to an ineffective level," states Richard Farr, a member of the LDN Facebook group. Then, tomorrow, I'm going to up my dose to 0.5mg. I'm planning on staying at this level for one to two weeks (deciding based on how I'm doing day 8 at this level). 

Why Isn't this prescribed more readily?

If this Low Dose Naltrexone drug is so effective for Fibromyalgia (among many other issues), then why isn't it approved by the FDA and paid for by health insurance?  Why aren't doctors more learned on the subject, and why aren't they prescribing it more readily?

The answer, unfortunately, is money.  Naltrexone has been around so long that it is considered generic.  Because of this, Drug companies can't make any money off of it. Dr. Gluck goes on to explain, "Because naltrexone has been a generic drug for many years now, no large pharmaceutical company will invest any money in the large research costs needed to gain FDA approval of these special new off-label uses of the medication. No one makes any significant money from sales of LDN! Nonetheless, there have been many small clinical studies of LDN performed at outstanding medical centers, all showing it to be safe and effective. Check my website for detailed information on the research [www.ldninfo.org/ldn_trials.htm]."

And so, I'm tentatively ecstatic to think that I may be able to get back my energy, clear-thinking, and have less pain.  That I might be able to actually count on mind and body on a regular basis instead of it feeling like every moment is a  roll of the dice. 

I will be keeping you updated on my progress.  I will not gloss it over.  If it doesn't work, I'll let you know.  Have you ever heard of LDN?  If you take or have taken it, what was your experience?  I'm especially wanting to hear from those who have taken it long-term, say 5 years+. I'd love to hear from you. I'm learning as I go.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Just Breath and Other Ways to Rewire the Pain-filled Brain

"Neuroplasticity, also known as brain plasticity, or neural plasticity, is the ability of the brain to change continuously throughout an individual's life, e.g., brain activity associated with a given function can be transferred to a different location, the proportion of grey matter can change and synapses may strengthen or weaken over time." -Wikipedia

I believe my form of Fibromyalgia stems from a nervous system that has been chronically in overdrive (fight or flight) mode for all of my life. At 54, that living on adrenaline came to a screeching halt when I could no longer function, forcing me to leave my teaching job and to spend the next few months largely in bed.

As a firstborn to a single mom who suffered from undiagnosed Bipolar and Schizophrenia, I know life was tense and unsure right from the get-go.  After living with my single-mom and her parents for the first 6 months of my life, my mom got married to a well-meaning man who had lost his first wife to cancer.  He had a 13-year old daughter at the time of their marriage.  My mom's emotions were intense.  During one fight, my mom punched her fist through a plate-glass window, cutting several long cuts, needing stitches.  (My mom told me the story when I asked her about the long, smooth scars she had on her right hand.)  Cal, her husband, immediately pursued divorce because he couldn't handle the trauma and tension my mom's explosive behavior caused.  Unfortunately, no one seemed to look into why she had these anger issues and irrational outbursts.  Instead, mom and I moved into a cute, little cottage in the same town as Cal.

From all the photos I've ever seen of us,
everything looks happy and wonderful.

One of the first times I remember fearing for my safety, I was with my sister. (Jean was born four years after me with a man my mom married for about two years; Joe also filed for divorce due to the violent temper my mom displayed.) She was mad about something and began throwing and smashing the dishes in our kitchen.  I can still hear her screaming.  To this day, a screaming voice causes my heart to beat rapidly.  In fact, as I'm writing this, I can feel my heart rate increase, heat rise in my face, and panic, that has been with me as long as I can remember, rise in my chest.

These episodes continued on a regular basis in contrast with the weeks she'd spend on the couch with me taking care of her and my sister and me.  I actually preferred it when she was down like this.  I could generally count that she'd be gentle and quiet. I learned to walk on eggshells, to fake being asleep to avoid confrontation, to shutter and whimper when she got angry so that she wouldn't hit.  My sister didn't so much, and I viewed her getting my mom's wrath on more than a few occasions that come back vividly, causing me again, to become anxious as I think on them.

It wasn't until I ran away my junior year that my mom did something that caused the police to incarcerate her and eventually hospitalize her. This led to her formal diagnosis and her spending the rest of her life in protective care, making me an independent minor and my sister be placed with a family from the church we had been attending at the time.

These years of living in daily trauma led to me striving-led to me working hard at achieving my goals to have a "normal" family.  I went to college-double major and Cum Laude. I  married at 21 (then finish college at 24) and started my first job full-time teaching position a week after having my daughter. My husband front-packed my five-day-old daughter in the school administrative parking lot while I was interviewing.  They gave me six-weeks off for my maternity leave before I started. I didn't know what it meant to live without the anxious feeling in my gut and chest.  I used that adrenaline to push me to go, go, go.  And from that relentless pushing to do and be the best at whatever I did. I got many atta-girls that fed both my ego and my need to fill the hole I didn't know I had.  I did not know of any other way to be in this world. This continued until June 2018 when the first non-stop pain formed in my calves.  (I explain the onset of Fibromyalgia in the two blogs What's Wrong With Me? Part 1 and What's Wrong With Me? Part 2.) 

Set On The Healing Path

Through the 10-week Fibromyalgia Pain Program at Mary Free Bed, I was introduced to how a nervous system that has been chronically on alert (fight/flight)  is then dysregulated to be too sensitive, sending pain signals were there is no injury. "Like an amplifier always turned to its highest volume," explains Dr. Daniel Clauw. This has led me to research neuroplasticity and rewiring the brain, which has promising new research and techniques.  I am looking to rewire my brain so that my automatic nervous system can live in parasympathetic (rest/digest) mode more often than the sympathetic (fight/flight).  

I've been focusing on this for the past 8 months: yoga, breathwork, meditation, EFT (tapping), resting, getting in nature, cardio exercise, naps, allowing myself to do only what seems doable at the moment... Many family members and friends had assumed that leaving the stressors of the classroom would be the fix. Sadly, no, this cannot calm down a lifetime of living with constant fear in my gut.  However, I am finding good resources and better understanding.  I do believe I'm making headway (although not as fast as I would like-tough to quelch that go-go part of me). 

On our drive home after our week spent in the woods at Pictured Rocks, scrolling through my Facebook feed, up came a post from Fedupwithfatigue.com: Rewiring the Brain to Get out of Pain-The Moskowitz Approach.  As I read, it illuminated the reason beyond just the cardio sending good endorphins throughout my body as to why my mind and body felt so much better with walking in the woods and as to why it lasted beyond just a few hours.  During my walks, I used the skills for meditation I had learned: paying specific attention to what I saw, heard, smelled, and felt. I breathed purposefully-two counts in and four counts out (feeding the parasympathetic system more than the sympathetic), and working on maintaining a tall posture (not the slumped one that has been my natural stance for as long as I can remember), holding in my stomach muscles to support my back and strengthen my core.

I then downloaded the book by Dr. Norman Doidge suggested in the article: The Brain's Ways of Healing which "Doidge compares learning to reprogram the brain to learning a musical instrument – or more aptly, perhaps, learning a new language. The practice is most difficult at first but gets easier over time."

Rewiring My Brain

A few things that I'm doing seem to be helping me rewire my overactive autonomic nervous system: yoga, breath-work, and walking in the woods with purposeful attention.  

• Yoga is a meditation in movement.  When I did yoga back before trying to purposefully quiet my noisy brain, I used it for cardio and strength training.  I did not see it as meditation.  I did, however, learn to breathe through my nose and at times would focus on my breath by silently counting in, 2, 3, 4, 5; out, 2, 3, 4, 5. Now, I purposefully focus on my breath for the whole practice.  When my mind wanders (which is often), as soon as I realize it, I work to bring my focus back on the in and out of my breath, linking it to the full movement and feeling it as it flows in and out from my belly to my chest. 
• The breathwork practices that I've been doing are two different types. (There are several types): Clarity Breath Work and SOMA Breathwork.  While each is a bit different from one another, both use focused, measured breathing over an extended period of time 20-60 minutes. I'm enjoying both and find myself energized, content, and pain-free for an extended amount of time. It seems to be extending longer and longer the more I do it. 
• Meditative walking in the woods is new to me.  I did it purposefully while in the woods by myself near Beaver Lake.  This is something that I want to continue and use. I will use my breathing and meditation techniques while walking in nature. 

I would also like to develop the visualization that Dr. Michael H. Moskowitz used (which tends to be harder for me) and try the sound therapy (iLs that Doidge discusses at length in chapters 7 & 8 of his book).  I have participated in one sound bath session and hope to be in another coming up soon at the yoga studio I attend. 

My efforts are producing good results.  I'm off of all prescription drugs for Fibromyalgia symptoms and using very little over the counter pain medications.  I'm finding I'm lasting from morning to night.  I'm more positive and more energetic.  I'm beginning to make plans, knowing I'll be able to make them. And as Doidge explained, it's getting easier to practice calming my noisy brain the more I do it.

Have you heard of rewiring the brain? Are you actively using this for healing? I'd love to hear what you're doing and any results you're finding.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Sleep, Fog, and Vampires

N.B- I do not own the rights to this image. It’s been circulating in online support groups.

I'm struggling to wake up this morning.  Last night at 2:30 am, I wasn't though.  I almost got up to write at that time because, well; I might as well use the time as I have it. However, I did stay in bed and fell back to sleep after a couple of hours.  Yes, I scrolled through Facebook, which is on my list of things I should not do at night if I want to sleep.

I have had a pattern of two-three nights where I just can't sleep.  Catch a few hours.  Not sure how sound, either. Then I'll have two or three good nights of sleep.  For the past few months, though, I'm still waking up at 7:00ish, coherent and energetic. Today, not so much.

I hate mornings like this.  My body is definitely winning over my mind.  I've been "awake" for 3 hours now.  Still barely moving, barely able to think.  I explain to others that I feel a thick fog taking over my brain, rusting the works.  Then, in this foggy state, an invisible vampire comes and drains the energy out of my limbs, leaving them limp and heavy.  I lie there.  That's when I call for Kelley to get me my meds.

Kelley went to our local pharmacy to pick up my prescription for Vyvanse that I should have done yesterday. It does help me- a lot.  Last spring break 2018 (before the Fibromyalgia diagnosis), I was whimpering at home because I was so listless and filled with anxiety and not being able to think clearly at work. It was the most challenging group of students my partner teacher and I had ever had.  But it was definitely more than that.  Teaching, which had rolled out of me naturally, allowing me to improvise easily and be fun in class, was not there anymore.

My own children, who were both diagnosed with ADD in college, after hitting the wall with demands that pushed them to their limits said to me, "Mom, you're the same as us.  You need to go get  tested."  So, bringing Kelley for moral support with me to my appointment with our new general practitioner, I expressed my frustration to him. "This is not me!" I remember saying. A caring doctor, I could tell he thought that I was just a ball of nerves needing a higher dose of Lexipro, replied, "Since you have this in your mind, let's have you go for testing to my friend who's a psychologist."

I met the next week with the Ph.D. psychologist, filling out several questionnaires, and having a talk before the computer test for ADHD.  Some of the questions, about my childhood and schooling really didn't fit.  I don't remember much about how I did things back then, but I have never felt disorganized and dreamy. However, after taking the test which consisted of correctly clicking and not clicking when a certain shape came up, I found out that I was moderate to moderately-high ADD.  The doctor congratulated me on my coping skills for the past 53 years.  The next week, I started 30mg of Vyvanse every morning.  I went for a retest a month later and took the same test but on the medicine and past with flying colors.

Then, the pain hit just a few months later.  I have wondered about the connection.  I've found different theories.  This one presented at the annual meeting of the American Academy of Pain Management, April 2018 seems to sit right: Study Finds: People with Fibromyalgia May Also Have ADHD  As it states, "The concentration and attention issues....can be a big deal for some patients....sometimes more disabling than the chronic pain..."

The combination of magnesium-malate, SAM-e, and Vyvanse has helped me write this on our deck this morning.  My brain is starting to win over my body.  My limbs have traces of energy moving back in.  Good thing- because it's a beautiful day and we get to meet up with dear friends we haven't seen in quite a while.

I find that learning from others really helps.  What does it feel, your times of insomnia, Fibro Fog,  and loss of energy?  Is it your main issue or is pain your main obstacle?  What do you do that helps if there is anything? Is there anything that you do that causes you to have worse symptoms? I'd love to hear from you; we can learn from each other or at least find a friend that understands.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have

to listen to my body and am not able to follow through as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email