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

Lessons Learned in Mother Nature: Managing my Fibro Symptoms

This photo was taken at Pictured Rocks at
Lower Hurrican Campground.

My husband and I agreed to be volunteer chaperons for a week of rustic camping at Pictured Rocks sometime last year.  I really had thought I'd have this Fibromyalgia beat by then-Ha! Ha! My daughter ran a program called Parks in Focus that gets 14 teens into the wilderness through the use of photography.  My husband and I have always been outdoorsy, so a free trip to the UP of Michigan sounded like a great deal.

The weekend before the trip had been a really rough one.  I was still dealing with what was to be the last throws of Cymbalta withdrawal: a weird headache and nausea, besides the pain being more intense, insomnia, and at times a deep sadness.  My resolve to stay off of Cymbalta for at least two months past withdrawal was waning fast. The night before, Kelley said that he could go and I could stay home, but I just didn't want to be left behind.  So, I got up, really out of it, and plopped my bum in the car ready for the six-hour drive to Pictured Rocks National Shoreline, thinking that I wasn't going to be much help and worrying that I would actually be a burden.

The wonder of nature
brought us all together.

The energy of 14 teens from 11-14 years of age (5 boys and 9 girls) was palpable.  When we stopped for lunch at Mackinaw City, I was beginning to get my legs under me.  One of the campers, an alumni of 14 and lead camper, remembered me from a trip we did with his group to Ludington State park a couple of years before.  He came up and hugged me and called me Abuela.  He named my husband Abuelo.  Our role as adopted grandparents was formed.

We arrived just before the thunderstorm that night. That meant we had to all hustle to get out tents up and the camp secured.  Dinner had to wait.  As I lay in our tent, on our new Coleman Queen-sized camping cot, I felt tentative that I could enjoy this week and be of help to the group.

After dinner that first night, my husband and I did a short walk from our campsite to Lake Superior.  It felt good to listen to the waves slap the sandy shore and the rush of Hurricane River flowing into the lake.  There were no real other sounds.  The air was fresh and the lighting of the sun through the dissipating clouds soft. It was then that I took some much needed deep breaths and did a few half-sun salutations and yoga stretches.  I could feel my mind, my body, and my soul let down.

I should have tried for a better shot,
 but trust me, I was feeling great here:)

The next four days were crammed with meal prep and cleanup, amazing outdoor adventures, beautiful sites, and happy faces. At Seney National Wildlife Preserve, while the kids were doing a pond study session lead by park rangers, Kelley and I went for a stroll through the ponds.  Then, at lunchtime, I pulled off to the side of the pavillon on the grass and did some yoga, meditation, and stretches.  I felt so much better than I had the past several weeks since completely going off of Cymbalta. Even more amazing was the fact that I was using very little in the way of over-the-counter pain reliever for the first time in several months.

The loons were calling and 
monarchs flitting around. 

That night I didn't feel the greatest.  I've been having times of pain that aren't exactly pain.  It's a deep electrical-type aching, much like getting your funnybone hit.  It's mainly been on my left side from under my left arm, up into the armpit, into the shoulder, down the arm to the fingers and up into the neck, causing a nausea-filled headache.  I did take two Zzzquil that night and ended up sleeping fairly well.  (I did have to get up to go pee.  However, with me having Interstitial Cystitis for many years now, we came prepared with our own travel potty: Reliance Fold-and-Go.) The new camping cot really was a perfect bed away from home.

The next day was to be the big hike.  We drove to Chapel Rock parking area.  The campers all had their cameras and were ready for a 6-mile hike.  The weather was threatening to rain in the later afternoon, so we knew we had to get going early that morning.  After the ranger's presentation about human interaction in nature, we began.  Kelley and I both used a walking stick.  He actually was in more pain than I was because of doing a major brick path laying project at home for the past couple of weeks.  The kids were kind and let us both walk at our own pace.  At about the three-mile mark, I was really feeling good, physically, emotionally, and mentally. 

Abuelo and Abuela-
taken by one of our "grandcampers".

Chapel Rock- a metaphor for living 
FULLY no matter the obstacles.

At lunchtime, I did get hit with a wave of that weird-electric-nausea headache.  I laid down on the ground and did some stretches and ate a peanut butter and jam tortilla roll-up and drank some water.  (One note: we drank a lot of just water on this trip.  More than I normally do at home.) I revived just in time to head back.  I also took the lead of the line.  My daughter had irritated her ankle and was needing to take a slower pace, so Kelley stayed with her. As the threatening thunderclaps were heard off in the distance, the kids and I began a quick hike back with no stops for photos or nature ogling. I have to admit I felt strong when a camper said, "Abuela, you are faster than the rest of us!" That night, I felt energetic and clear-minded. I went into a sound sleep without aches and pains.

The kids commented that I was 
handling the walk better than they were! ;)

The next day, while the kids went on a canoe trip across Beaver Lake with the Ranger, Kelley and I hiked the groups' lunches to the beach we'd meet them later that morning.  That morning, I had woken up with my usual stiff-sore legs and arms, but I was able to get the rust out through the early walk. Kelley and I got separated after I realized I had left my walking stick at our resting spot from a while back.  He went on because we were worried that we'd be late meeting the group for lunch.  Our communication for where to meet up was a bit off, leading me to add on an additional mile to my overall walk.  Towards the end of that 5-mile walk, I could feel I was hitting the end of my energy level. I focused on consciously noticing what I saw around me, the smells of pine and lake, the sounds of waves rolling in and tweets of the birds, and the taste of the wintergreen leaf I chewed. I also focused on slowly breathing in and out. Those ways of being present have really helped me appreciate and FULLY take in these precious moments. 

Luckily, we were all ready to go home and take a nap.  Sleeping in the open air really is refreshing.  By dinner time, I was back up and rejuvenated.  That night, sitting on the beach of Lake Superior, watching as the sunset, I really felt like there was hope that I could live my life, on my terms, without the help of pharmaceuticals.

A Change of Path

On the drive home yesterday, I found an article about Rewiring the Brain (brain plasticity).  Dr. Norman Doidge, the author of The Brain's Way of Healing and The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, talks about how walking, specifically, can help to rewire the brain and fix what is broken.  Through the Fibromyalgia Chronic Pain program at Mary Free Bed, I had already bought into the idea that I was dealing with a broken brain that is overprotectively sending out pain messages.  I certainly have made progress through their guidance.  However, going off of Cymbalta definitely challenged my coping skills.  I feel that walking (especially in nature) is a healing thing for me.  I could feel the change. I am now going to do further research in this area.  I highly recommend listening to this talk: The Brain's Way of Healing and reading these articles: Walk Your Way to Better Brain Health and  How Walking in Nature Changes the Brain.

5 days, no shower or bath, 
yet really feeling good.

What brings you peace? What brings you joy? What renews your body and soul?

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

Down The Rabbit Hole: Could Medical Marijuana Help?

I took this photo of 
Alice In Wonderland's Tea Party at
Fredrick Meijer Gardens and Sculpture Park.

When I was 12 years old, the summer before I started 7th grade at Harrison Park Junior High in Grand Rapids, my mom gave me two books to read: Go Ask Alice by Anonymous and That Was Then, This is Now by SE Hinton.  Both were life-impacting books for me.  At that tender age, I vowed to myself that I would never get into drugs.

As an adult, I do not like ever not being in control of myself.  I also hate a foggy, unclear brain.  So, I never really got into drinking or drugs.  I won't say that I don't know what it is to be out of my head; my husband and I tried mushrooms one time when we were camping. His roommate had sold him some.  Mushrooms are from nature, right?  Well, while that is a very interesting story I have told very few people; it's not one we ever visited again.  I also know what a hangover is like.  I'm definitely a light-weight and after my three maximum drinks in an evening, I will be laid low for the entire next day if I have more, so I don't do that.

As I've stated in prior blogs, I was VERY opposed to taking Cymbalta, one of the three approved FDA pharmaceuticals for Fibromyalgia.  I finally gave in when I was so beside myself with pain, brain fog, and no strength or energy this past December.  From there, I was on it for 4 months (30mg), 2 months (60mg), 1 month (30mg) and then I stopped- cold.  This was a bad move.  I should have actually taken the 30mg every other day for a month, etc. to taper down. Lesson learned. 

I'm now two weeks into Cymbalta withdrawal and still feeling badly (mostly from withdrawal side-effects). However, the pain is there.  Currently, the left side of my body from foot to left eyeball is aching so much I'm nauseous.  When I wake up, my arms and legs feel as though their connective tissue has turned into wood.  It's slow going and painful to get them functioning for the day.

More Than I Can Handle

This weekend, feeling beyond what I could handle with my breathing, stretching, aerobic, and meditation strategies, I began to research medical marijuana (MM) in the state of Michigan.  I had a response from a reader of my blog Feeling Like #$%&*! replied that he was able to ditch Cymbalta (and other like-pharmaceuticals) by using marijuana transdermal patches.  I did bring this up to my pain doctor, but I could tell he wasn't willing to look into it after his comment that "there's not enough research".  However, after doing some of my own, I decided to get a Michigan Medical Marijuana Card to use if I couldn't handle things fully on my own after the withdrawal passed.  

This is a convincing video that has 
helped me open to the idea of MM.

To get a Medical Marijuana Card in Michigan, I had to locate a doctor who would recommend the card for me based on my diagnosis.  I found Healthy Partners and made an appointment without an issue.  I had my medical records with Fibromyalgia Diagnosis faxed to their office.  The DO I met with just verified my diagnosis and marked "chronic pain" for the reason, being Fibromyalgia isn't listed by name for the accepted reasons for the card.  (See list provided on Healthy Partners FAQ page.)  I then applied for the card online at LARA: Department of Licensing and Regulatory Affairs.  This was about a 20-minute job once I had the paperwork from the doctor. The only other worker at the office was very informative, and I quickly found out that getting the card would be the least of my concerns.  

Need to Become Your Own Expert

Being the MM Card is a recommendation from a doctor and not a prescription, the patient is the one who needs to know what he/she wants and needs.  A quality resource that explains things fairly well is Leafly.com. Although, for someone who is totally new to using marijuana, it will take some trial and error.  My plan would be to go into it very timidly.

I want pain relief, clarity of thinking, and living my life productively.  This isn't what one stereotypically thinks of when referring to marijuana.  Turns out there are two types: Indica and Sativa. (Below a brief description from Leafly.com- Part 1, Sativa vs Indica: An Overview of Cannabis Types.  They also list a Hybrid of the two types.

• Indica strains are believed to be physically sedating, perfect for relaxing with a movie or as a nightcap before bed. 
• Sativa strains tend to provide more invigorating, uplifting cerebral effects that pair well with physical activity, social gatherings, and creative projects.

Next, the consumer needs to consider the strain. Leafly.com allows one to research based on desired effects for your treatment. I do not want side-effects that produce the  "high", munchies, tiredness, or paranoia. So, using the Advance Filter, I am able to look up specifics.  Also, I researched what other consumers and doctors are saying about MM and Fibro. 

My go-to blogger on for solid information on Fibromyalgia is Fedupwithfatigue.com.  Her article was just what I wanted: Fed Up With Fatigue: Best Strains for Fibromyalgia.  She's written several on the topic, and I've come to trust her factual presentation. 

Finding a Provider

Next, I have to find a provider.  (MRA-Licensed Michigan Medical Marijuana Facilities) I want a licensed (monitored) facility that I can rely on to have a pure, quality product.  Also, I don't want to smoke (or have the marijuana smell).  I'd prefer to find transdermal patches, but this looks like it might be difficult to find. The difficult part, after finding what sounds like the best fit strain and delivery system, is finding a place in Michigan that I can buy that product.  I can already see that I'm going to have to call and visit a few places.  The strains I'm most interested in: Harlequin (High CBD and lower THC)  for day time and then, Tahoe OG Kush for nighttime insomnia. The problem I'm encountering is that MI facilities don't have these specific strains in the exact delivery system I would like.  So, actual calling and visiting will be needed. 

Why I'm Considering MM

There are several reasons why I like using MM versus Cymbalta and like-drug. The main reason is that I can decide the dose.  I don't think I'll have an everyday need (we'll see).  I'm following the program that I got from my 10 weeks in Mary Free Bed's Fibromyalgia Program.  I'm continuing to grow in being present and meditation.  With Cymbalta (although the side-effects aren't major for me, they do impact my quality of life), it's an all or nothing commitment.  I have learned the hard way that stopping its use every day is very difficult for my body from which to rid itself. I also don't like feeling trapped by it.  

So, being I haven't yet tried MM, I can't say if it's going to work or not.  However, I'm finding good evidence to say it's worth a shot (and way less invasive than the prescribed pharmaceuticals).  I will keep you informed on what I find out and what happens if I choose to use it.

*If you are not in Michigan, I would imagine that the path you take would be similar.  However, Michigan has recently joined the states that have approved marijuana for recreational use.  

There are many resources to give you insight into the use of medical marijuana: 

• A Conversation with Dr. Sanjay Gupta on Medical Marijuana
• Medical Marijuana (Cannabis) for Fibromyalgia
• Cannabis and fibromyalgia - My story for the CU School of Pharmacology

What are your thoughts of using THC? There isn't a lot of research on it's effects for chronic pain/Fibromyalgia, what there are is promising. Possibly more research will be coming since it's becoming legalized in many states.

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.

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