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:

Finding Your Passion: Nourishing the Soul

Woman resting on a dry bag while writing after backpacking near a lake.
This is going to be a short post.  I just got back from a few days camping with wonderful friends on the shore of Lake Michigan.  This has been planned for a year.  Our group, we fondly call the Wander Woman, started the hiking/camping trips July 2018 when we did a week-long trip to South and North Manitou Islands in Lake Michigan.  My friend, Lisa, reminded me that she noticed my constant massaging during that trip.  It wouldn’t be until November of that year that I fully understood that there was something very wrong with me. 
Related Post: 
I’ve been planning and working towards my goal of spending the week with them.  We were to camp in Canada at Lake Superior Provincial Park. However, the border between Canada and the United States is still closed due to COVID-19. So, instead, we chose a closer state park in that we could drive to.  Not everyone who had originally planned to join us could come: some due to family commitments, one due to the death of her mom (non-virus related), some due to not feeling comfortable in doing so. 
We agreed to be logically safe and trusted that our Wander Woman cohort had been safe prior to camping.  The park was not crowded at all and so we had no issues out on the trails, at the camp, using the restrooms, or on the beach.  We chose to wear masks only inside public places (the restrooms). 
Renewed Passion:
I am so energized after these past few days.  Wonderful conversation with my friends that ignited my imagination and funny bone, as well as a few shared tears, met with empathy and love. The photos will be the rest of my description of the joy that is currently bursting in my heart.
 

 

 

 

 
 
 
 
I can’t thank my friends enough for helping me get back my courage to stay in a tent after a day of hiking and swimming.  I have gotten my courage back to do this more often with my husband. I even talked my daughter into doing a short trip with me soon.  My soul is nourished and my passion blazing again.
 
Related Posts:
 
Another Passion Ignited:
 
My blog is ONE-year old now.  I have learned a lot from doing it.  I’ve made friends from across the country and the world.  I’ve learned from other bloggers how to live well with a chronic condition as well as how to blog better.  It, too, ignites my imagination and gives me a purpose that makes me happy.
 
So, when I found out that I was nominated for two WEGO HEALTH Awards, I felt that this passion was also recognized by those who have watched my blog grow and those who I have hopefully helped in some way.  It’s such a wonderful, supportive group that I have found through blogging.  
 
If you are interested in endorsing me via the link below (just being nominated is really amazing), I humbly thank you.  In my post for the end of this next week, I will be sharing out those who have most impacted my wellness journey, so that you, too, can learn from them (and endorse their nominations for WEGO AWARDS) if you should feel led.
 

 

 

I appreciate this time in my life that I am able to live my life fully (filling it with purpose and passion) alongside good friends and my family despite living with Fibromyalgia. I hope that I can help you find that for yourself as well as you journey through this life. 

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:)

Keep Reading:)

Becoming Myself Again! My Experience with Low Dose Naltrexone-Part 2

Today is my 56th day on Low Dose Naltrexone (LDN).  I wrote about my initial experience after 13 or so days in.  I won’t revisit that, but if you are at all interested in checking into this pain management treatment, I would suggest you read it.  I get into how to go about getting it, how to start it (and issues I had it), where to find support with good and specific information, and why there are not and will never be many research studies about it. (My Post: Tentatively Esctatic! My Experience With Low Dose Naltrexone Part 1


I now feel that I can safely say LDN is bringing me back to myself or the self I want to be. But, let me take a step back because it’s not been a smooth journey and sure has had its major downturns. 

Early on, I received the advice that I needed to “Go low and slow”. (See Facebook LDN group)  I didn’t fully get it when it was first said. My doctor ordered the 4.5mg capsules, so I felt that getting to that level-the level that has been most researched for Fibromyalgia(FMS)-the soon was better.  I’ve since learned that there is no optimum level that works for every person. 



How LDN Works


LDN blocks the opioid receptors of the brain for a few hours.  When this has happened, the brain feels that there haven’t been enough endorphins created in the body, so it produces more. Research has shown that those living with FMS have lower levels of endorphins in our system.  So, when the brain is “tricked” into releasing more endorphins by the LDN blocking off the receptors for 2-4 hours, it actually is creating natural pain relievers and mood booster. Also, the blocking of the receptors makes them more sensitive to the endorphins that have been created, making them more useable and plentiful. 

LDN Science explains how it works, “Since LDN blocks the OGF receptors only for a few hours before it is naturally excreted, what results is a rebound effect; in which both the production and utilization of OGF is greatly increased. Once the LDN has been metabolized, the elevated endorphins produced as a result of the rebound effect can now interact with the more-sensitive and more-plentiful receptors and assist in regulating cell growth and immunity.”  The site goes on to explain that the Rebound Effect lasts for about a day.  However, being every person’s metabolism is different, it can take different dosages with 3mg to 5mg working for most patients. 

When one has low endorphin production, they will experience:
        • long-term pain throughout the body
        • tender spots that hurt when they are touched
        • muscle stiffness
        • fatigue and low energy
        • sleep problems
        • depression


To combat this, doctors often push endorphin-building exercises such as yoga, swimming, and walking.  I  have felt this distinct change from a raise in my endorphins when I was in physical therapy.  When I showed up lethargic, hurting, and down, my PT would get me on the treadmill for 20 minutes at a rate that got my heart pumping.  Every single time, I found that I had way less pain, my mood was improved, and I had energy.  

And so, this is the effect that I am finding with LDN.  For a good 7 to 8 hours, at the current dose I’m at, I am experiencing a pain level of 2-3, I have the energy to go for walks, swim, do house projects, write, socialize, etc.  I also have clearer thinking and feel upbeat and motivated.

My Experience

However, I have had the complete opposite during these 8 weeks.  After writing my first post, I had a very difficult week.  I was moving up from .5mg by .25mg every 5-7 days.  I had started to take LDN in the morning, upon waking at 7:30am because I had gotten warnings at the medicine causing insomnia which is not something I wanted to experience. 

About two weeks ago, at 1.5mg or so, I had five days in a row where I was depressed (ready to give up using LDN), tired, and my pain levels (6-7) were higher than before LDN. I was so discouraged. I had read of the Rebound Effect that LDN created, but I really had no idea what it meant.  Fortunately, on the 5th day, I saw someone discuss this on the LDN Facebook group.  Her explanation about the blocking of endorphins made so much sense and now what others had said to me about taking it before bed became clear.  I was experiencing the blocked-receptor symptoms during my wake hours, thus causing elevated pain, depression, and exhaustion!

I went off from LDN for 36 hours, starting again with 1.5 at 9:00pm. Ever since that switch, I’ve been doing pretty well, and I’m actually sleeping okay without taking anything else. I’m waking up a couple of times, but I have been able to go back to sleep fairly readily.  I’ve been able to have my granddaughter over and play for much of the day.  Today, in a race with her from our community garden to home, I actually ran three or so blocks without feeling like a rusted Tin Man struggling to move.




Moving Forward

I’m continuing to titrate up at this point.  As they say, I need to find my “sweet spot”.  I’m not fully sure what that will look like, so it may take some back and forth in dosages for a while.  Higher isn’t necessarily better.  Due to metabolism, I need to find the dose that blocks while I’m sleeping and gives me the full rebound effect while I’m awake.  I don’t believe I’m there yet.  If I take too high of a dose for my body, then I’ll be in blocked mode for too long of a time, which will bring on the opposite effect for what I need. 

LDN Resources:


I will continue to update you as to my progress.  I’m not “there” yet for sure and am not sure how long that will take.  Some have reported reaching their personal full results at 6 months or even a year.  They say to hang in for at least 8 weeks, which I have done and certainly am having wonderful results at this point. If you have questions or stories about LDN, I welcome them.  I am not a doctor, obviously,


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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