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.
Last week, I did something I thought I’d never do again. I backpacked for the first time in five years!
Fibromyalgia Walls Closing In
As I followed the best advice from experts in the management of Fibromyalgia, I found that I increasingly felt closed in, cut off from what I felt I could do. Those of us living with Fibromyalgia know the fear of the flare. We’ve been told that limiting our activity is the best way to keep that at bay. The fine balance of doing and resting tends to be the focus.
For me, one who has been very active all my life, the more I followed this commonsense advice, the more I felt like the walls of Fibromyalgia were closing in on me. I had given up the thought of ever doing many things I loved to do. Actually, I was coming to accept that was the way things were.
After this experience, chronic pain won’t stop me anymore from doing the things I love.
- Unlearning My Chronic Pain: Mind-Body Syndrome
- EMDR Therapy: Rewiring the Fibro Brain
- Growth Mindset: A Teacher’s Approach to Healing Chronic Pain
Prior to developing Fibromyalgia, I lived a very active life. After a full day of teaching, I’d come home to a full night of family life. On the weekends, my husband and I often do all our house chores of yard work, laundry, and the like, as a family. Then, we’d fit in a hike, family gathering, or attend our kid’s soccer games.
In the summer, we would go on extended vacations that tended to be both rustic and physical: hiking down the north side of the Grand Canyon, a week-long canoe trip in Killarney Provincial Park, or exploring Isle Royale.
That all came to a halt in November 2018 when I found myself struggling to even work. My last day of teaching was December 7th, 2018 when I went on long-term leave, fully believing that if I took a month or so to take care of myself, I’d be able to go back. That didn’t happen, and since that time, I’ve spent most of my time focusing on getting well.
- Fibromyalgia Journey: Choose to Make Every Day a New Start
- Just Breath and Other Ways to Rewire the Pain-filled Brain
- Families are Complicated: Using DNA Tests to Discover Your History
MY LDN Journey
A huge part of my healing work has been done through research. Living in a small, rural Michigan town, there’s no one who knew much about Fibromyalgia. I, myself, had never heard of it before my diagnosis.
Discovering Low Dose Naltrexone 2 years ago, led me to a point that I could actually consider going on a 40-mile, 5-day hike along the North Country Trail in Pictured Rocks National Forest.
This past April was my one-year anniversary since starting Low Dose Naltrexone. I’ve detailed my journey through my blog. However, it was soon after that I talked with Linda Elsgood and discovered that I should look into taking my best dose (4.5 mg) twice a day rather than what I had been doing, dividing the full dose into two separate doses of 1.75 mg.
After further research, I found that for Fibromyalgia and C-PTSD, doctors have been finding good success with two or even three doses a day. (LDN Book 2 & Dr. Brian Johnson)
- Tentatively Ecstatic! My Experience With Low Dose Naltrexone Part 1
- Becoming Myself Again! My Experience with Low Dose Naltrexone-Part 2
- I Did It My Way! One Year of Low Dose Naltrexone for Fibromyalgia
- 1st Interview with Linda Elsegood: Katie Uses Low Dose Naltrexone ( LDN) to help with symptoms of Fibromyalgia, pain, fatigue, and brain fog
A Chink in the Wall
Only this winter, I turned down the offer to do this exact hike with two of my best friends. I just didn’t feel I was able. However, since starting the double dose of 4.5mg (on waking and around 4 pm), I was able to have more active days and finally be more predictable.
I began to hike again with a group of women (my age and older) called the Wander Women of Newaygo. Every other week, we would do a day hike of 4 to 9 miles. As the weather warmed up this spring, my husband and I began to do day hikes, but also some rustic camping over several days, including day hikes and kayaking.
Last month, I was feeling pretty strong during a hike (those of you who get into the woods know it can cause a thing called “hikers high”. It was then that a newly acquainted hiking friend from the WW group asked if I would like to join three others on a weeklong trip. Impulsively, I said, “I’d love to!”
- The Frozen Fascia of Fibromyalgia: Myofascial Release
- Five Steps to Take When in Pain
- EMDR Therapy: Rewiring the Fibro Brain
Doubt Takes Hold
When I went home, though, and told my husband, the reality of the trek hit me. (He had done the hike the summer before with my cousin and found it very challenging.) He was worried that my body would lock up and I wouldn’t be able to make it. Being there is no cell service and he was to be out of town for work that week, the concern was real.
The past few months prior to the hike, I was involved in a lot of long hikes, yard work, and moving my daughter from a four-bedroom house to a 3rd-floor apartment. This level of physical activity had proven tough on my body. My body literally locked up, giving me electrical zaps and zings in my lower back that would cause me to have to freeze. However, with the LDN and other management protocols I use, I was able to keep going day after day.
What amazed me was how clear my brain was and how much energy I had each day. This had been the cause of my early retirement. I could mostly push through the deep muscle pain I have everywhere, but the inability to think/talk and the feeling that my body was filled with wet sand, made it impossible for me to function.
Now, I will admit, before my LDN dose kicks in (generally an hour after I take it in the morning), I struggle to move. I tend to be really zombie-like and the pain/tight muscles really need massaging. But after that, I have been pretty good until the afternoon. I can feel myself “dropping” which leads me to take my second dose.
- Up in the Air: Struggles with Flying, Fibro Flare, and Acceptance
- Fear of the Fibro Flare
- What’s Good Enough?-Acceptance to Eliminate Shame
Call to Be Courageous
The group of three women, all older than me and very supportive, understood my concern. Nancy, the one who had invited me, offered to do weighted hikes (meaning I carried a backpack that I gradually increased in weight over several hikes).
Also, she helped me develop two contingency plans. One: being it’s a straight path, I could just rest and do my myofascial release with the therapy balls I would bring with me. If that meant they went on ahead, that would be fine because I could catch up with them once they stopped at the designated campsite. Two: the trail has a few drive-up spots for day campers/hikers. I could most likely find someone to take me out to the town, so if I carry my ID and Visa, I could go to a hotel. (I had packed my pain management paraphernalia in my overnight bag for after the hike, which I could get access to in this case).
In the end, I just felt called to do this hike. I can’t explain it, but I think the walls of Fibromyalgia had been making me feel more and more limited; I just had to break through to prove that I can live the FULL life that I have been striving for.
So, I purchased a lighter-weight tent, backpack, sleeping bag, and a few other special things. All our gear was 25+ years old, so it was reasonable, but it also locked me into doing the hike.
- A Love Story: Stronger Together
- Am I Strong Enough? Life With Fibromyalgia
- Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts
Hiker Ups and Downs
I’m not going to say this trip was all sunrises, Caribbean blue waters, and campfires, but a good portion was. For the upper peninsula of Michigan, the weather was pretty perfect for the hike (70o days and 50o nights). Also, there were NO bugs (a miracle, really).
We had a pretty intense thunderstorm the first night. My tent stayed dry, well almost.
I also have Interstitial Cystitis, and as I have been working on “Unlearning this Pain” with Dr. Howard Schubiner through his Mind-Body Syndrome (MBS) Therapy, I had been having more intense bladder spasms the few weeks prior to the hike.
This was a main concern of mine, so I had packed with me a women’s urinal, Circa Care pee cloth, a few level-5 Poise Incontinence pads, and some quick-drying, moisture-wicking underwear. Dr. Schubiner told me to keep no secrets and use humor with my situation, which I did my best to follow.
That first night, after getting up 3 times to pee in the woods, the storm began to rage, about 3 am. In the end, I realize that I should have just gone out into the storm at 5 am when my bladder started to demand it because either way, I’d get wet, but I just couldn’t think straight.
In the end, I was able to wash things out at our next stop, using biodegradable soap. Using my pads, I had only gotten my underwear and thermal leggings wet. After this situation, I didn’t have any more issues at night, other than getting up like 4 times. However, hiking with a 32-pound backpack doesn’t make it all that easy for an attack of urgency. Luckily, my companions fully understood, and we all shared embarrassing stories that got us laughing pretty hard about the whole absurd situation.
- Ur In Trouble: Interstitial Cystitis and Fibromyalgia
- What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1
- Managing Chronic Pain is a FULL Time Job
Retraining My Painfilled Brain
The first three nights of backpacking an average of 8 miles a day, found my body seizing up and zapping me as I worked to put up my tent and make my dehydrated dinner. I had packed two main luxuries: a camp chair and four 6 oz plastic bottles of wine to have one per night.
Even though the zings and zaps came, I would stop briefly and then continue on. Each night in my tent I did my “rolling around on my balls” as I told my fellow hikers (myofascial release) and in the morning did stretching and yoga. At night, I did guided meditation (based on the MBSR of John Kabat Zinn). While I hiked, I walked mindfully and did a lot of gratitude and positive affirmations, “I am strong. I am safe. I am healthy.”
What may be a breakthrough is that by the 4th night, the electrical shocks in my back had stopped. Even after the 5th day of hiking, I didn’t have that issue. I believe this is because I’m showing my over-amped nervous system that I am actually okay and not hurting myself.
Change to Three Doses a Day
After the first night of extra pain in my elbow and knee joints, keeping me awake and feeling pretty worn out about 7 pm each day, I decided to take a third dose of 4.5mg. I had been taking my second dose earlier in the day (2 pm) than when I was at home, and so, I took another at 9 pm.
With all the physical exertion, I didn’t have my normal struggle to fall asleep that I usually do with taking LDN at night. Also, the level 6 joint pain was much less through the night. I believe this extra dose really helped me to do the whole 40-miles.
I can tell you that six days after coming home from our trip, I still am feeling the “high”. I didn’t have the awful “flare” that those living with Fibromyalgia dread so much. I’ve had less activity and have done a more myofascial release during these last days because my legs are definitely more clenched up.
However, my mind is feeling fairly clear and my body feels up for having my granddaughter spend the night.
I am so very grateful to have broken through this wall that I had thought was permanent. I know now that I am able to do the things that I love with people that bring me joy. LDN has been an integral part of getting me this far down the trail.
I have spent four years on this wellness journey. I do not want to give the impression from this post that I could have ever jumped to this endeavor without all that has come before. I needed to follow the conventional wisdom of pacing, etc. to be able to calm down my nervous system to even be able to function enough to work toward this goal. There are MANY things that led up to this moment and many things that I continue to do. To learn more, read about my journey from my posts. I’ve documented from the very first few months.
Thank you for visiting my blog today. I am committing to posting once a week by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.