Come So Far! Last Summer to This

Last July found me STRUGGLING. I know what you’re thinking, But we were all so happy and carefree last summer. COVID-19 problems aside, I am out of the hole that I had been in since before my 2018 diagnosis of Fibromyalgia.

July 13, 2019

I was having withdrawal symptoms form going off of Cymbalta.

“I have not felt this bad since I had viral meningitis (I’m not as bad as that time in the emergency room, but man, it’s reminding me of it). Since the purpose of this blog is for me to record my true journey (for healing through the writing and remembering where I’ve been) and to possibly help others who are dealing with Fibromyalgia, I’ve decided to write this (as I can today because doing anything and nothing are both really difficult right now).”

Painfullyliving.com I FEEL LIKE @#$#%

My Other Posts From July 2019

This was a very low time for me. The year prior had brought me to my bed which then lead to a diagnosis. The only option I was given to have relief from the pain and other devastating symptoms of Fibromyalgia was to start on Cymbalta. While it did help me, it had side effects and long-term addiction that I was not willing to deal with. And so, I stopped taking it, mostly how the doctor told me. I’ve since learned that I’m very affected by any medication (OTC, Herbal, or Prescription), and so, now I know that what everyone else considers easy will not be for me.

A New Me

First time backpacking since I became sick. It was a wonderful two days.

This July has brought me back to myself and to the joys of summer that I had missed so much. Certainly, I’m having to pace more than I used to and be cognizant of what my body is telling me. I now must take care of myself. If I don’t, then I will have a day or more where my body will hold me down to attend to rest, hydration, nutrition, meditation, stretching, myofacial release, sleep, etc. My family, friends, and myself have come to understand that I will do things in smaller chunks over a longer period of time. And while that was not at all how I functioned (non-stop go without eat, sleep, etc. to get something done), we all have come to know I can now plan and participate within my wellness protocol.

Two weeks ago, I was able to camp for a few days, adding in a hike and swim each day, with my friend group we lovingly call Wander Women. My husband, who had just gotten back from a week of hiking in northern Michigan was quick to set up an overnight hike/camp trip on the North Country Trail about an hours drive north of us. While I was useless in helping with the preparation (too worn out after having a wonderful sleepover with our granddaughter), I was excited to see if I would be able to carry a pack, hike, and sleep in a tent with a pretty thin mat between me and Mother Earth.

We hiked in 5 miles to find a wonderful spot to set up camp for the night. We saw no one but three women passing by on the trail for the two days on the river trail.

It was a wonderful trip. I will admit I didn’t sleep well. We will be replacing the thin mats for the next time. We’ve decided that hiking to a spot, setting up camp, and then hiking from that base will be our way of going from now on. That provides enough chance to rest and recuperate, and it isn’t as difficult to hike since we don’t have the pack on all the time. By the time we headed back on the second day, I was definitely hitting my limit. However, after getting back to the car and eating dinner at a restaurant with an outside patio, I felt much better.

Looking Back at the Road I’ve been Down

The past few years have been one of growth and healing, albeit never a straight one. I’m so grateful for all the help and healing that I’ve received from so many: my family and friends, yoga classes, massage therapists, physical therapists, occupational therapists, doctors of a few different sorts, meditation courses, fellow chronic pain bloggers, my counselors, those friends I’ve met in Fibro, LDN, and chronic illness Facebook groups, my Wander Women groups (one from work and one from the town I live in), You Tube videos, text and audio books, music, and so much more.

NEW BLOG WEBSITE! My First Post on WordPress.com

This is my first blog post on my new website format. I’m learning a lot about web design over this last year and have much more to go. I’m feeling proud and excited for what I might do with this new love and skill.

With all of this week filled with hiking, family, and building a new blog, this post will be less pulled together than normal. I just wanted to share the progress that I’ve made. I’m including (from My Recommended Resources page of this site) much of what has helped me this year along with links or further information. I do believe that it’s all of these things/people/resources that have brought me to where I am today. I’m not naive enough to think that I won’t have many twists and turns and ups and downs (just got diagnosed with a rare deformity of my carotid artery called Fibromuscuar Dysplasia-not at all related to Fibromyalgia), but I want to relish where I am right now anyhow. If I’ve learned one thing this past few years (and since COVID-19’s arrival), what will be will be; it’s my choice how I react.

  • Low Dose Naltrexone (Newest addition-55 days in. Started at 0.25mg and am now up to 2.5mg and still titrating up to find my best dosage amount). Sleeping pretty well without any other help; clear headed most days all day; less pain overall, more energy. My first post: Tentatively Ecstatic: My Experience with LDN Part 1 I plan to write Part two soon.
  • CBD/THC 1:1 Oil- This didn’t seem to help with pain, but sure did help me sleep soundly. I was taking .25mg sublingually before bed. I stopped because the LDN seems to be helping with it and my GP expressed issues with it (even though I have a medical marijuana card and it’s now legalized even for recreation in MI). My post: Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia
  • Meditation: I have continued with meditation after finishing the Palouse Mindfulness 8 week free course online. This is making a big difference for me. My post:The Danger of Distraction: Turning Toward Pain to Eliminate Suffering
  • Yoga and Breathwork: This is an ongoing, continuation practice of 20 years. However, I’m having to learn that my practice looks different now. I had always strived too much to get to that perfect form of a pose often injuring myself in the process. I’m doing much more Restorative, Yin, and slow yoga practices these days. 
  • Supplements: Magnesium Malate/B-12/E/D3
  • OTC: Bayer Back and Body (for headaches and pain) & Low Dose Asprin for FMD
  • Prescription: Vyvanse (I was diagnosed with ADD one year before my FMS diagnosis; I do think that the ADD symptoms, though, are more connected to the FMS issues.) 
  • Hot pad, ice pad, Epsom salt baths, and hot tub.
  • Massage & Myofacial Release: Professional massage & myofascial release, myofacial release @home using foam roller and Yogu Massage Balls, and Rhenpho Massage Gun
  • Gentle cardio: walks, hikes, bike rides, and swimming 
  • 10-week Interdisciplinary Pain Management Program through Mary Free Bed – My Post about this: Just Breath and Other Ways to Rewire the Pain-filled Brain
  • Diet: I haven’t made a ton of changes. This is an area where I really hate being deprived. I have given up on dairy. I eat way less gluten (doing a lot of substitutions). I intake food with high acid much, mostly because I hurt immediately after. I rarely drink carbonation and don’t drink much caffeine. I tend to lean vegan due to the no-dairy. However, I do eat some poultry, eggs, and fish. However, I just can’t cut out tomatoes.

I know that I am so fortunate to be where I am right now in regards to my health. I have friends who live with chronic illnesses that are really struggling right now, especially because of COVID-19. Many who can’t get around due to being very at risk if they were to get the virus. Those who have lost their form of income or don’t have health care. Some are dealing with depression, and others are hurting in due to their relationships hitting some very difficult times. You are on my heart. How are you this summer?


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.

Sharing is caring-as my granddaughter tells me:)

RELATED POSTS:

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.)

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.