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.
July 13, 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.
“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 @#$#%
I mostly followed the doctor’s directions for weaning off of Cymbalta. However, I’ve since learned that I’m very affected by any medication (OTC, herbal, or prescription), and so, now I know that what everyone else considers easy will not be for me.
Talking to the doctor mid-withdrawal, he said that I could have taken it every other day at the 10 mg before going completely off. Unfortunately, by then I was more than a month in, so it didn’t make sense to me to start taking it againnto help with the weaning off.
My Other Posts From July 2019
- Fear of the Fibro Flare
- I FEEL LIKE @#$#%
- Following My Heart…Tentatively
- Whatever Makes You Hopeful and Lightens Your Heart Just a Little…
- Down the Rabbit Hole: Could Medical Marijuana Help?
- Fibromyalgia Forced Me to Look Inward
A New Me
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 had functioned prior to developing Fibromyalgia (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.
Wander Woman Camping Trip
During the second week of July, I was able to camp for a few days, adding in a short hike and swim each day, with my friend group we lovingly call Wander Women. I was able to show them myself protocol; they were especially interested in my making a solution with distilled water and LDN pill.
I ended up needing to go home a day earlier than the rest. While I was doing pretty well, I could tell that one more night on the thin sleeping pad was going to be one night too long. My friends readily understood why I had to say goodbye. However, we made plans for them to visit me at my house (outside only and taking the same precautions) later in the summer.
Two Day Hike and Camp Trip for Two
My husband, who had just gotten back from a week of hiking Pictured Rocks in northern Michigan, was quick to set up an overnight hike/camp trip on the North Country Trail about an hour’s drive north of us for the last week of July. After my camping and hiking experience with the Wander Women, I felt that I might be up to doing it. However, it had been 3-summers ago since I last did such a trip.
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.
What a wonderful trip! I felt so grateful and energized by being in the woods. I will admit, however, that 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. In the past, we would hike to a spot, set up camp, make dinner, etc, and in the morning pack everything up to be on our way to the next camp site on down the trail.
Realizing that the energy it takes to one carry all the equipment necessary for camping on our backs for the entire hike as well as energy necessary for the setting up and tearing down each day, we realized that we needed to adjust our expectations and modify our energy output.
By setting up camp in one spot and doing day hikes from there, we could take small day packs with snacks and essentials only for the hike. Kelley carried the heavier quarts of water, so I really had almost no extra weight to carry. Also, using my walking sticks (see my post on Nordic Walking and how it aids those of us living with chronic pain), I was able to do the nine mile hike the first day.
Hiking and wilderness camping is something that inspires my soul. This first trip since developing Fibromyalgia gave me hope that I can participate in such things again. #hiking #fibromyalgia #fullyliving #pacing #knowinglimitsTweet
Knowing My Limits
By the time we headed back on the second day, I was definitely hitting my limit. My legs were aching and I was feeling weak and fatigued. However, after getting back to the car, doing some myofascial release, and eating dinner at a restaurant with an outside patio, I felt much better.
Admittedly, when I got back home, I had several down days. I had to rest up and do almost nothing. But, the experience, greatly outweighed taking these days for rest and repair. Hiking and wilderness camping is something that inspires my soul. This first trip since developing Fibromyalgia gave me hope that I can participate in such things again.
Looking Back on the Winding Journey I’ve Been On
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), YouTube videos, text and audio books, music, and so much more.
My New Blog
This is my first blog post on my new website format. I have learned 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 Fibromuscular 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.
Resources That Have Helped Me:
- The Brain’s Way of Healing by Norman Doidge, M.D.
- The Body Keeps Score by Bessel VanderKolk, M.D.
- The Four Agreements: A Practical Guide to Personal Freedom by Don Miguel Ruiz
- Wherever You Go, There You Are by John Kabat-Zinn, MD
- The Miracle of Mindfulness by Thích Nhat Hanh
- Life Beyond Fibromalgia: A Personal Guide for Moving Forward and Leaving Struggle Behind by Elaine Merryfield
- The Fibro Manual and The Fibro Food Formula by Dr. Ginevra Liptan
- Gaia-My Yoga Online
- Insight Timer
- Calm-Meditation, Music, Stories
- Daylio-Mood Monitor
- The Tapping Solution App
- Unlearn Your Pain with Dr. Howard Schubiner
- Dr. Liptan (You Tube Videos)
- Chronic Pain: Is It All In Their Head? -Dr. Daniel Clauw, M.D.
- LDN Research Trust
- Fibromyalgia Association of Michigan
- National Association of Fibromyalgia
- Interstitial Cystitis Association
- Fibromuscular Dysplasia Society of America
- Palouse Mindfulness (A free 8-week mindfulness course)
- Support Fibromyalgia Directory
- 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 & my latest post I Did It My Way! One Year of Low Dose Naltrexone
- 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:This is an area where I really hate being deprived. I had given up on dairy, prior to developing Fibromyalgia. However, I finally bit the bullet and have gone Gluten Free (Read my post on how it has greatly helped eliminate my stomach pain: Fibromyalgia: Impact of Going Gluten Free. I don’t eat food with high acidity, very much, mostly because my bladder hurts immediately after. However, I just can’t cut out tomatoes, so I take PRELIEF and OTC for lowering acidity of foods in the bladder. 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.
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 due to their relationships hitting some very difficult times. You are on my heart. How are you this summer?