- Following My Heart-Tentatively
- Whatever Makes You Hopeful and Lightens Your Heart Just a Little…
- Lessons Learned in Mother Nature: Managing My Fibro Symptoms
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.
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.
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.
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.
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 9:00 pm. 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.
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.
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, but I can give you direction to people who are and speak to my own experience.
|A lotus flower begins growing at the bottom of a muddy, murky pool, and slowly emerges toward the surface, bursting out of the water into a beautiful blossom. During the night the lotus closes and sinks under the water, and emerges again with the sunlight of a new day.As the lotus flower emerges from the mud, and up toward the surface it is completely unstained.|
Bob Dylan was right. The times are continually changing whether small or major. Change is a part of life. However, change, whether good or bad, brings a certain amount of stress, and that stress can bring on a flair for those of us with chronic conditions such as Fibromyalgia.
Since November of last year, it’s felt like one pretty big change after another in my family: changes in health, changes in jobs, changes in homes. My first reaction tends to be a pulling back, in my mind and body. I stiffen, literally, as if to strengthen or to push back on the change. This can lead then to tension in my shoulders and chest which triggers in me a sense of anxiousness.
What I’m purposefully working on is leaning in. Leaning into the change like a trust fall. Breathing and being present in this moment, reminding myself that I’m safe, secure, and supported. That my family, we are in this together, and we’ll all be all right as long as we stick together. This means that we share at a deep level, knowing that we can make it through anything.
This is bringing a new perspective to change. Change that at first seems like a disaster, turns out to be just the kick in the butt that was needed to move to the next level in our lives. It ends up being a major blessing. The prospect of change is now exciting and full of potential, making me open up my imagination for what I can create out of this next part of my life.
As the daughter of a mom with bipolar/schizophrenia, I heard again and again that just as things were going good, it would turn and storms would come. She would tell me that if things get really good, then prepare for them to get equal parts horrible. At that tender age, I took that as a life lesson that has kept me on my toes, waiting for the anvil to fall at any moment. However, now I realize that this was her reality, one which she really didn’t understand. She’d fly high for a time and then crash. It was what she understood to be the way of life. I’m just now realizing that I had this underlying belief coloring my entire life.
This last week, I went on a vacation that I was hesitant to take. It was coming at a time of major change for my children, and I felt that I needed to be around to help them through. I didn’t think I could enjoy the time away. Right up to the night before we left, I was tensing up, bracing for the worst. I only went because my husband really felt we needed to go (and we’d already committed to the condo with my brother and sister-in-law).
|After the November 2016 fire ripped through
Gatlinburg and Anakeesta Theme Park,
the community came together to rebuild
this favoritetourist attraction.
When we visited the fall of 2019, we could still
see scars of the fire but they didn’t compare
to the new beauty that was present.
The time away was so good. We went to a place we’d never been to- Gatlinburg, TN. My brother-in-law chose our destination. It’s not a place that Kelley and I would normally visit. But, I think, it was just what I needed to let go, getting a bit wild and silly. My sister-in-law is one of the most caring, real, and hilarious people I know. We did things that neither of us would have normally, but with the four of us, we did. Tonya conquered her fear of heights by walking among the tops of the mountains over a glass, swaying bridge. I tried moonshine-nearly all 13! To conclude our week, she and I each got a symbolic tattoo. It is Tonya’s first. She remembered her mom, gone 15 years now, with a Rose-of-Sharon and her mom’s signature copied exactly from the note her mom had written to her 40 years ago.
I got a lotus on my inner left arm. It’s something I will see often reminding me that I am strong and have come out again and again to show my beauty. I’m reborn daily. Daily I am changing.
This last week, I didn’t take any pain medication. I was able to get up in the morning and be alert and active all day (with a bit of a rest in the afternoon between activities). My symptoms from the Fibro are there but much more in the background. I’m feeling like I can be recreated, just like the lotus, each day is a brand new start. Times of change are times of celebration, growth, potential to recreate my self. I’m choosing to lean in and enjoy!
4/10/20 Update: Due to COVID-19, Akaneesta Park is closed until the #stayhome #staysafe orders have lifted. They working on even more additions and improvements this year. To say that our world is facing enormous change from this pandemic is an understatement. But, I have faith, that we will come out the better and stronger. Mother Earth has given us the kick in the butt we need to make substantial changes to how we treat both her and each other.
Are you open to change? Do you balk at it? What have you learned from the changes in your life?
As we are all hunkered down at home, figuring out what to do with all our extra, unstructured time has been a hot topic. Posts share activities to do alone, with our children, with others outside of our walls via technology tools such as Zoom(live meditation, book club, or family talk sessions), YouTube (online Tai Chi, house concerts, book readings), and Board Game Arena (where you can play board games online with people all over the world).
I have friends posting the latest puzzle they’ve completed, new drinks they concocted with special COVID-19 satirical names, socks they’ve knitted, and latest movie marathon or binge-worthy show they have found.
While all of these things are wonderful, and I am so thankful to have so many options for how to spend my days while at home, I have come also to understand that it can be detrimental as well. I’m sure I’m not alone when I share that I’ve been feeling emotional pain (anxiety and sadness) along with physical pain-Fibromyalgia muscle and joint pain all over my body that flares up in roving areas throughout the day. When I experience pain, my goal is to always get rid of it. I see it as bad and not a feeling I want around. If I can be distracted from it, I chose that.
If you’ve been following my blog, you know that I’ve been taking an online Mindfulness-Based Stress Reduction (MBSR) meditation course through palousemindfulness.com. (To get a background for what I’m doing, check out this post Mind Over Matter: 21 Days of Meditation.) During week 5, I was introduced to a woman who has had a lifetime of severe pain (physical and mental),Vidyamala Burch, who has created a mindfulness program to live well with pain. She explains in her book Living Well With Pain and Illness, “When you bring awareness and curiosity to the actual experience of pain, often you find that it’s not as bad as you feared.”
The focus of my last two weeks has been to use meditation when I’m not feeling well (physical pain or emotional pain) to then TURN TOWARDS pain. I also just finished reading The Subtle Art of Not Giving a F@#!$ by Mark Mason which hammered in the same premise. “In every case, we can choose to avoid our pain or choose to engage our pain. When we avoid our pain, we suffer. When we engage our pain, we grow,” states Mason in his blog post My Life Philosophy.
During my studies this past week, I was introduced to the idea of the Felt Sense which isa concept that describes internal bodily awareness that arises from increased awareness. Basically, it is a turning towards the sensations in our body (often difficult to describe) to bring them to consciousness. Manson suggests, “We suffer for the simple reason that suffering is biologically useful. It is nature’s preferred agent for inspiring change.”
Much like the Disney movie Wall-e shows, if we were always content with no problems or pain, we’d also become complacent. With pain and need, comes innovation and solution. I’m sure if I had not developed Fibromyalgia, for example, I would not be here writing, researching, digging into knowing more about what makes me tick. I was pretty content to ignore myself. But my ‘self’ wasn’t having any of that. The poem, The Felt Sense Prayer, concretely illustrates how the human mind and body work together not only to protect us but to grow us.
Manson contends, “Like physical pain, our psychological pain is an indication of something out of equilibrium, some limitation that has been exceeded.” If we then focus into that pain, becoming aware it’s there, we are then able to come back to balance.
Burch has created a 5-Step process to turn towards our pain so that we can live FULLY.”… the only authentic and sustainable way to be fully alive is to be open to all life’s moments, not just the ones I prefer,” she explains. This life is short; I want to live as fully and as authentically as possible. My years of ignoring, blocking, and last year this time, drowning in pain, has brought about a sense of discord between my body and mind. These past three weeks of consciously turning toward pain (emotional and physical), I am noticing a sense of ease and balance blossoming within.
Meditation is just taking time to focus inward. For me, I focus on the feel of my breath coming in through my nostrils, down my windpipe, and into my diaphragm like a cool, silky ribbon. Then, at the turning point of exhaling, I follow it’s warmth in reverse; inevitably, my body releases a bit more into the bed, mat, chair as I do this. Getting distracted is natural. Burch explains, “You’ll probably find yourself caught up in distractions hundreds of times a day, but choosing awareness even once is a victory, no matter how fleeting that moment may be.” So, I’ve learned not to criticize myself for having a monkey-brain, but to notice and celebrate when I realize I’m off my focus point and come back to it.
This is the time when I pick out one thing to focus on. Maybe the aching, burning pain deep in my left thigh or the tight, weighted feeling in my chest that shows up when I’m anxious. As I continue breathing, I focus on the feeling, imagining the breath to reach right there. I may even put my hand on the main area. And then, I work to notice the sensation, being as descriptive as possible: burning, aching, sharp, sadness, loneliness, etc. My meditation teacher, Dave Potter, says to say “I notice that there’s something in me that has the feeling……” This wording allows me not to identify myself as this difficult feeling but to acknowledge that it is there. I notice the area, size, shape, and texture of the sensation. Sometimes it is thin and blanket-like, resting almost over top of me. Other times, it seems to be rounded and blobby, thick as a doughnut. It can be sharp and hard or dull and wooden or elastic and ropy. I notice my feelings about this sensation. At this point, I work to soften my approach to it; allowing it to be. Treating it and myself as I would a child who was hurt, being gentle and loving.
Breathing into the difficult sensations, accepting them as they are, I begin to notice minute changes in the feelings. Then, I begin to scan my body. Starting at my toes and slowly scanning to the top of my head, I search for a pleasant sensation. At first, I really didn’t get this. I have pain all the time in nearly every part of my body. However, with practice, I’ve gotten better at noticing the little pleasant tingle in my earlobe, or the buttery softness of the blanket that’s covering me. This is not a distraction of positivity as Burch explains,”This attitude of sensitivity, openness, and honesty to the whole of your experience, including your pain, now allows you to gently turn to the pleasant aspects of the moment that have been there all along, just outside your field of awareness. You can feel stable and whole, rather than grasping for pleasure to avoid your pain.”
At this point, after about twenty or more minutes in the above three stages, I spread my focus to encompass my whole body (noticing the pleasant and difficult sensation is still there). Widening out, much like you do when you zoom out in Google Maps. Focusing then on the room I’m in, still noticing my body’s sensations, then widening out to the neighborhood, town, and world. This seemed like a hokey part of the turn towards meditation; however, I’m beginning to understand and assimilate that this is the time I realize I’m not alone in this. I am reminded that pain is a part of the human experience. This leads to acceptance and non-judgment of my situation (equanimity).
I can choose my response to whatever difficult feelings I’m experiencing. I can choose to accept and soften into it, being loving and gentle with myself. “Rather than feeling your pain is right on top of you and you’re trapped in a battle that leaves no space to choose your response, you can find ways to respond creatively to any circumstances with a soft and pliant heart,” teaches Brach.
This is not magic. It takes practice, over and over. I’ll notice, hey my throat feels tight and achy. When that happens, taking time to Turn Towards right then, makes this a choice that gets easier and easier. And as I am finding, more effective each time.
How do you handle difficult feelings/sensations? What do you think of Vidyamala’s method of turning towards pain to live more fully?
|“Rabbit hole is a term used to refer to a bizarre, confusing,
or nonsensical situation or environment,
typically one from which it is difficult to extricate oneself.” lexico.com
Those of us with Fibromyalgia (and those treating us or living with us) quickly come to understand that it is a bizarre, confusing, nonsensical journey. I have pain where I am not hurt. One day it’ll hurt all on the left side of my body for no reason that I can identify and the next day it’s completely on my right side. I have energy one minute and feel like I’m wearing lead boots the next. I am so tired all day yet keep myself up and about until bedtime, and then at bedtime, I’m awake and clear-headed having no ability to fall asleep.
We also learn that this bizarre journey is really one we must go on our own. There is not a one size fits all treatment for Fibromyalgia Syndrom (FMS). Slowly and not at all straight forward, I am finding my way out of the confusing, dark tunnels and into the light of being able to manage my symptoms.
At the end of July 2019, I explained how I had gotten to the point of wanting to try medical marijuana to help me manage my FMS symptoms. I was just coming off of withdrawal from Cymbalta (one of the three FDA approved prescription drugs for treating FMS). If you haven’t read it, it would be good to read:Down the Rabbit Hole: Could Medical Marijuana Help?
|Each container of 10-10mg gummies
I have no affiliation or kickbacks for mentioning these products.
I amwriting about my experiences only.
Just after getting a Michigan Medical Marijuana Permit (under the category of chronic pain), I decided to go to a local dispensary. My research on Leafly.com was helpful; however, the dispensary didn’t carry what I had thought would be the best to try as reviewed on their site. I knew I didn’t want to smoke or vape. So, I decided to go with Wana edibles (sour watermelon and sour blueberry).
I was nervous about going to this new world of a cannabis dispensary and didn’t quite know what to expect. However, my nerves were calmed by the professional environment and the friendly people who worked there. I stressed that I didn’t want to feel “high” nor did I want to sit stoned on the couch craving munchies (all stereotypical ideas I’ve gotten from movies, etc). They steered me towards the two above edibles, one for day time use and one to help me fall and stay asleep.
That first day, I decided to heed all the warnings to try just a bit, so I cut the “gummy” into halves. The directions say: Start with a low dose of 5-10mg (cut in half for 5mg). Wait at least an hour to feel the effect before consuming more product. Around 2pm in the afternoon, I ate the sour watermelon hybrid of sativa and indica half piece. The hybrid is supposed to give a more balanced effect. I was hoping for less pain and clear-headed energy. One hour later and beyond, I felt little difference besides a bit of light-headedness.
That night, I decided to take the sour blueberry which has indica strain (which helps with falling asleep). Because of the lack of noticeable effects, I took 10mg (so a whole piece) around 9:30 pm (so 7 hours after the first 5mg). From what I’ve researched, the effects of edibles stay in the system for 6-8 hours. So, possibly, I didn’t quite wait long enough for the other to be fully out of my system. Or, the indica THC just had more of an effect on me.
I did fall asleep in short order. However, I woke up, around midnight (just about the time the THC would have been highest in my blood system), to a scary sensation. I felt like I was going to forget to breathe. It felt like I was just going to stop. Also, time felt out of whack. This disorienting feeling lasted for an hour or so and then I fell back to sleep.
I hate feeling out of control. So, I put the gummies away and haven’t tried them again….yet.
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I took the .25mL sublingually (under the tongue) before bed for two weeks. I’ll be honest, the taste seemed like castor oil meets olive oil, so I quickly learned to wash it down with water.
This resulted in a solid night of sleep each night (fell asleep fairly quickly and stayed asleep). Those of us with FMS and other chronic pain issues know that sleep can be one of the major things affected. As my physical therapist says, “Sleep is when the body heals.” So, loss of sleep compounds issues.
I also noticed less pain during the morning times (amped up again in the afternoons) as well as generally clearer thinking. I did notice that if I took an additional dose in the afternoon (say by 1pm), I ended up getting a bit groggy. I didn’t try that out on a consistent basis, which I plan to yet do.
After the two weeks, I decided to not take it and note what changes I had. I ended up doing this for only three nights. That’s because I had three nights of little sleep. I took it the fourth night and slept soundly again.
|Mary’s concentrated tincture is an easy way to add CBD to your daily wellness routine. With organic full-spectrum hemp extract with naturally occurring cannabidiol and THC, nutrient-dense sweet almond oil, hormone-balancing myrrh and the warmth of cinnamon oil, this soothing blend helps provide physical and mental relief. The Remedy packs 250 servings into just a half-ounce bottle, and each drop contains a 2mg dose of CBD. (Nut allergy)|
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Only available in Michigan and California.
“Our data indicates that medical cannabis could be a promising therapeutic option for the treatment of fibromyalgia, especially for those who failed on standard pharmacological therapies.”
“Medical cannabis appears to be a safe and effective alternative for the treatment of fibromyalgia symptoms. Standardization of treatment compounds and regimens are required.”
“If you’re trying to treat, like chronic back pain, chronic joint pain, or recovering from achronic illness, you may need a good bit more CBD, and the thing to do is .”
“When taking edibles for the first time, start with a small dose and work your way up to a dose that produces the desired effect.”
What are your thoughts or experiences with using cannabis for managing Fibromyalgia symptoms? I’m hoping now that cannabis has been legalized, that there will be more research about its uses as well as educated doctors for guidance.