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:

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.