Waking up this morning with pain, I cried. Pure frustration. My poor husband asks, “What do you want for me to do?” At first, I asked for a massage. When he asked where, I just whimpered, “Never mind.” Reality is, he can’t possibly help. The pain seems to have no spot to massage. It’s just everywhere.
So, I ask for my Yogu myofascial release therapy ball, hot pad, and water, and medicine. That helped me to calm down. Then, he drew me a hot bath with Epsom salts. And, as I soaked, he brought me some tea.
I met Kelley when I was 19. He was 22. I was the waterfront director at a fairly unusual summer camp for kids. Camp MUCC, Michigan United Conservation Club, which for those of you who might not know, is a hunting club. Being I had never even thought about hunting before, this was an odd place for me to land a job. But I was there for the water. Kelley, on-the-other-hand, having studied Wildlife Management at MSU, was hired as a riflery and hunting instructor.
This was to be my home for the summer before going off to college. I had just left my foster family’s home never to be a dependent again. I knew I was now on my own. Kelley was on his own, too. Everything he owned was in two luggage boxes. This was to be his home before he ventured out to find his “real” job.
The week of training, before the campers arrived, we hit it off right away. And from there, on the weekends, once the campers had left after breakfast on Saturday, we often were the only ones left at camp. We were poor as college-students, but we had food and shelter on a small lake in the quaint town of Chelsea, MI. Life was good.
At the end of the summer, before I headed to college and Kelley off to Arizona to try to get a ranger job at any national park, we went on a week-long canoe trip, just us two, down the beautiful Manistee River. It was probably the most wonderful week of my life. At the beginning of the trip, Kelley asked, “What if I asked you to marry me?” I snorted, “I’m too young for marriage.” Nothing more was said about that all week. However, at the end of the week, as Kelley was taking me back home to Grand Rapids, his car broke down near the Cedar Springs exit.
We stayed the night at the campground just off from 131, Kelley covered in grease as he worked on the car to get it going. I remember him looking up from the engine as I stood there talking to him and handing him tools as he requested. And that was when he decided it was the perfect time to ask, “Will you marry me?” I didn’t hesitate, not even recalling what I had said one week earlier, “Yes, I will.”
We were engaged, no ring or anything at that point. We didn’t tell anyone we were for at least half a year. Kelley was leaving for AZ in the coming week, and I would be at UofM, forging a new life. Not sure we knew how things would work out, but I know for sure that we both knew we were going to be together through it.
This was before the Internet and e-mail were a thing in your average person’s life. Kelley and I were poor. I was living off my savings from the $1000 that I had made over the summer, Pell Grants, and student loans. Kel was living with his mom and step-dad (both very supportive of him finding a National Park job) and odd jobs he found in Phoenix. We could not afford long-distance calls, and so we wrote.
Kelley was and is a guy who shows his love through what he does and generally doesn’t say lovey-dovey stuff. Surprisingly, when given a pen and paper and no way else for us to connect, he poured everything out. I, too, found that writing allowed me to fully express my thoughts and emotions, much more so than when we were goose-bumped, love-struck-dumb in the presence of each other. (Ah, new love!) And so the letters (long, long letters) flowed.
After six-months apart, Kel did not find a park job and I was really struggling at school, so he decided to drive back to Michigan. The red Pacer he was driving was glued and tied together for the most part. But he was determined to get back to me. He drove straight through on what would be the equivalent of several Monster caffeinated drinks (instead black capsules caffeine). By the time he got to Ann Arbor, his eyes were buggy and bloodshot and his hair a greasy mess. He called me at my dorm, letting me know that his car had conked-out on the highway just outside of town.
Being I didn’t have a car, my good friend, Mindy drove me to get him. She was ever so kind to let this wild-eyed, unsavory looking man in her car. She had really only heard my stories and saw me writing him letters and making him mixed-tapes of love songs, but she really had no idea who he was at this time.
We laugh now (she and her husband have been good friends all these years later) at how she, out of pure love and concern said, “Katie, are you sure you want to marry this guy?” I was sure. I loved that scruffy, red-bearded man, and I knew he loved me.
It was that February (Groundhog’s day) that we bought my engagement ring and our wedding rings. That next summer, we did one more stint as camp counselors at Camp MUCC and then the next spring, 5/25/1985, we were married, surrounded by our family and friends.
We’ve been married 35 years. Down days like the past few, make me appreciate the love we share. We’ve had so many twists, turns, ups, and downs on this journey together. We’ve grown so much from those homeless babies back when we first met. The life that we’ve built together gives me strength, courage, and purpose.
We continue to journey together. This year finds us with more twists and turns as I was diagnosed with Fibromuscular Dysplasia, a rare vascular disease that is affecting both of my carotid arteries. Yet, we are ever stronger together, and because of him, I am more courageous than I ever thought I could be.
I almost didn’t write a post this week. The first two paragraphs were written on Monday. I was too out-of-it and down to write after that. Until today. The direction of the post took a totally different turn as I thought about how much my guy means to me and just how much he supports me and has from the very beginning. Who in your life do you depend on that gives you the extra strength and courage you need to live FULLY despite pain?
REPRODUCED HERE and Updated ON PAINFULLYLIVING.COM 11/1/2020
After a three-year slide into brain-fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, fatigue so deep that it felt like all the iron had been taken out of my blood, and spiraling anxiety, I was diagnosed with fibromyalgia.
Being I was in peri-menopause, I chalked it up to the change in hormones.
I asked my friends (teachers and those around my same age), and many claimed similar issues of being tired, stressed, anxious, and waking up as if by the alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them had, so thought I may have injured myself.
Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares because I was the only one not able to sit still for the hour.
Just a Part of Peri-menopause?
I reported to my OB/GYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me that I was fine and just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OB/GYN when I began to experience anxiety that was interfering with my ability to handle the demands of my life.
She said that it was pretty normal to have the anxiety levels I was experiencing at my age. She diagnosed me as peri-menopause. She put me on 5 mg of Lexipro (an antidepressant), which seemed to help me, at first. Then the following start to the school year, things worsened, so I went on a higher dose of 10 mg. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.
My Doctor Thought I was Just a Stressed-Out Mess
I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.
My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us. You need to be tested for ADD.”
So, I went to my general practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really yet know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.
When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that since you have this on your mind, we’ll have you do the test. I could tell he felt I was just a stressed-out mess.
However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.
However, there was one thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. Any how, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.
The Deep, Gnawing Pain Returned and Got Even Worse
This brought me to the end of a very stressful school year of many challenges and changes, and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, a deep, gnawing ache that began in my legs. I had accepted the pain under my arms and the inner part of my knees as something that went along with getting older, but this was a totally different pain that seemed to be gaining in strength.
No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes was to rival the last year as far as stress was concerned.
Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell the brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.
A Relief-Finally Diagnosed
Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.” When the blood work came back, he said, that this could possibly Fibromyalgia.
I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this Fibro thing was. Also, the reviews on the medications like Cymbalta scared me to death.
By December 7th, I was on long-term leave. I had given in by asking for a prescription after really wanting to avoid taking Cymbalta. I started with a 20mg dose, feeling some better, albeit, not liking the side-effects.
I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a Fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed). I was officially diagnosed as having Fibromyalgia.
At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved by the diagnosis because it meant that I would be eligible to get into the pain management 10-week program and in my mind, get back to living.
Finding My Way
In the beginning, I created a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.
I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).
I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.
Issues I have that can go from light to severe and anywhere in between at any given moment:
Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
All-over muscle ache: When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
Deep sadness: I don’t feel it’s depression because it comes and goes.
Aversion to strong smells, bright lights: I had always been someone who loved having the lights on and now am one constantly asking for them to be turned off.
Big fluctuation in body temperature: Especially in my hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves. When in bed, I’m in and out of the covers all night.
Hands and feet edema: I have yet to figure out the cause.
Dizziness/nausea/headache: That just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
Stomach Pain: I went through a Nissen Procedure 2016 for acid reflux; while I don’t have as much acid reflux, my stomach is upset whenever I eat (no matter the diet) and I have continuous pain at my sternum.
Bowel issues: Diarrhea to constipation and back again, never really normal. However, I think this is more due to supplements and what I eat.
Posts that share my current symptom management:
I decided to start a blog about my experiences after first discovering what Fibromyalgia was and then that there wasn’t information out there that seemed to fully fit my own situation.
I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to manage it so that I can live my life FULLY, on my terms, even while having pain.
I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.
In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then, I’ve fulfilled my purpose. If no one reads it, it serves in developing what I love (writing) and helps me to process my journey.
Writing and Fibromyalgia Symptoms
I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Have-to doesn’t work well for me or the Fibromyalgia it seems. I did ‘have-tos’ for so long that it feels like my body puts on the breaks when I feel that now. However, I’ve been proud of myself this past year. I have aimed to write one post a week (by Friday), and while I haven’t made it each week, I have published a total of 68 articles.
To get out of the should and must mindset, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.
I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once I had the time.) However, to be honest, that has stalled for now. Writing poetry tends to be my go-to when I need to let out emotion.
I have my writing area set up. I love to sit looking out at the lake. (I’m so fortunate to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.
Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written off-my-plate, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)
I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).
To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)
Connect at a Heart-level
Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.
My first lesson was always for them to reflect on what they know about, care about, and are interested in. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.
Instead of wanting to impress as the goal of writing, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would get us.
So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.
I’ve been honored for my work this year by being recognized as a patient advocate:
If you’re diagnosed with Fibromyalgia: get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.
I chose not to complain constantly about the issues that come with Fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.
Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.
I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with an “I’m starting afresh”.
How do you handle the hard stuff in your life? Can you find the hope and push in every new start of the day? How do you push past the pain and difficulties?
This is going to sound very weird. I’m smiling while lying in bed. I’m smiling while typing these words. I’m smiling when no one is around and there’s nothing particularly amusing going on. I’m doing this after reading the book The Miracle of Mindfulness by Thich Nhat Hanh, a Buddhist Monk from Vietnam, who played an important role in the 1960s and beyond.
“…begin to follow your breath and to relax all your muscles. Concentrate on keeping your spinal column straight and on following your breath. As for everything else, let it go. Let go of everything. If you want to relax the worry-tightened muscles in your face, let the half-smile come to your face. As the half-smile appears, all the facial muscles begin to relax. The longer the smile is maintained, the better. It is the same smile you see on the face of the Buddha(1).”
Thich Nhat Hanh
When ThichNhat Hanh talks about meditation, he talks about posture, breath, focus, etc. but one thing he also emphasizes is putting on a half-smile as a part of your practice. ThichNhat Hanh writes,”Now, begin to follow your breath and to relax all your muscles. Concentrate on keeping your spinal column straight and on following your breath. As for everything else, let it go. Let go of everything. If you want to relax the worry-tightened muscles in your face, let the half-smile come to your face. As the half-smile appears, all the facial muscles begin to relax. The longer the smile is maintained, the better. It is the same smile you see on the face of the Buddha(1).”
SMILING DOESN’T COME NATURALLY
This made me curious because it’s brought up a few times in the book- how smiling when meditating, leads to smiling while being mindful, leads to smiling in every moment. I think of my resting face. I’ve not ever liked it. I look mad. I once had a student say that they had been told I looked like the woman who hosted the 2000-2017 TV game show called The Weakest Link. She was worried I was going to be mean and say something like, “You’re the weakest link!” Ugg! That has stuck with me.
However, smiling all day does NOT come naturally for me. When our 6th-grade level moved from a middle school building to a K-6th elementary building, everyone smiled all the time, so I tried, too. I remember joking with my partner teacher that after the first few days my cheeks actually hurt.
I decided to look into this whole smiling thing because according to Thich Naht Hanh, it really has a major impact on our inner perceptions and also for those with whom we interact. So, I decided both to research and start this smiling thing throughout the day as much as I could remember to do it (and not make others think I was losing touch with reality).
THE SCIENCE OF A SMILE
In the article World Smile Day-How Smiling Affects Your Brain, the author explains, “Smiling activates tiny molecules in your brain that are designed to fend off stress. These molecules, called neuropeptides, facilitate communication between neurons in your brain. Also, when you smile, your brain releases dopamine, endorphins, and serotonin. These neurotransmitters are associated with lowering your anxiety and increasing feelings of happiness. In fact, serotonin is often the chemical that anti-depressant medications attempt to regulate. This natural, feel-good chemical cocktail that your brain serves up helps you feel happier and more relaxed, and it can even lower your heart rate and blood pressure (2).”
1. Smiling Increases Happiness Hormones
In the article What’s the Science Behind the Smile? the author, Ding Li states, “This is the start of the positive feedback loop of happiness. When our smiling muscles contract, they fire a signal back to the brain, stimulating our reward system, and further increasing our level of happy hormones, or endorphins. In short, when our brain feels happy, we smile; when we smile, our brain feels happier (8) .”
2. Smiling Makes Us Better Looking
In addition to feeling happier, a 2011 study by researchers at the Face Research Laboratory at the University of Aberdeen, Scotland found that when we smile, we actually are better looking to others! “A study published in the journal Neuropsychologia reported that seeing an attractive, smiling face activates your orbitofrontal cortex, the region in your brain that processes sensory rewards. This suggests that when you view a person smiling, you actually feel rewarded (5).”
3. Smiling Is Contagious
Another study of the effects of smiling on the brain conducted in Sweden showed that it was very difficult for subjects not to smile when shown photos of people smiling. They were told to frown at every photo with a smiling face. Participants’ first natural reaction was to smile. They had to consciously choose to frown in order to follow the directions (4).
4. Smiling Gets the Job Done
In the workplace, studies have shown that smiling increases the feel-good aura which in turn increases productivity as well as creativity (6). Researcher and economics professor, Andrew Oswald’s found, “Happier workers, our research found, were 12% more productive. Unhappier workers were 10% less productive (3).”
4. Smiling Reduces Stress
Smiling can even help keep our bodies healthier. Some research says it can add on years to our lives because our cells change their functioning due to our thoughts and emotions. “When we smile, we reduce the rigidness of our cells, and this physical relaxation can help combat the risk of stress-induced cell mutations that can lead to the development or persistence of various cancers (7).” It is thought that less cellular stress allows for better balance in the body which then leads to health and overall wellness.
MY SMILING CHALLENGE
There are times a grin comes to my face naturally. Do you see the crow’s feet at the sides of my eyes? This is a true smile of happiness according to scientists, called the Duchenne Smile (6). When I’m around this kid, my face lights up to her bright smile. I have noticed a sense of energy and happiness comes nearly every time no matter where I am physically and emotionally before she comes over.
Smiling in Honor of the Man of Many Smiles
While writing this post this morning, I received a phone call from my cousin. My uncle Bill and surrogate dad passed away today. He was someone who never spared a smile for me. I wish right now that I had somehow captured that smile in a photo from the last time he gave it to me when we visited him and my aunt in Arizona. His smiles were always quickly followed by a hand holding or hug. During the last year, when he couldn’t speak his thoughts due to Aphasia and dementia, his smile said so much, “I’m so glad to see you! I love you! You make me happy!” That smile is etched in my memory as are the countless before, but I don’t want them to fade.
Did You Know There is WORLD SMILE DAY?
And so, I’m going to follow Thich Nhat Hanh suggests in his book by smiling more. I’ll let you know how my experiment goes on World Smile Day, October 2, 2020. If nothing else, it will strengthen myzygomatic major muscle, which resides in the cheek and tugs the lips upward and my orbicularis oculi muscles, which encircles the eye socket and squeezes the outside corners into the shape of a crow’s foot (6). Or I’ll make everyone wonder what I’m up to! Both are worth the effort!
I’ve been doing the Smile exercise since August, basically everyday. I use an app called Dailio that tracks my activities. I’m proud of myself that I stuck with it. I was on vacation to Utah National Parks on October 2nd, 2020, which was the actual World Smile Day this year, but I know I smiled quite a bit during our month-long trip. Has it made a huge difference? I’m not sure. I do know that I smiled during times of frustration, sadness, anger, and pain; at times it was very difficult to do. I do think it helped shorten my time of feeling down (but didn’t do anything to stop the pain).
To help lessen pain, I continue to use protocols like meditation focusing on breathing, heating pad, myofascial release, massage, stretching, Breathwork, etc. I think it’s strengthened my smile muscles, too. Not a bad thing at my age;) As long as I don’t use it to cover up or be fake, I do think this is a good practice. One addition I’ve made when I smile during the down times is to focus on acceptance, making that a part of the half-smile.
Do you smile often? Have you ever faked a smile? I challenge you to do the Half-smile Exercises for the next three months. Let’s see if we can bring a bit of goodness to the world.
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.
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).
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.
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.
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.
I was in a painful flare and starting to get desperate. Although mindfulness and meditation help, I felt like I couldn’t continue to push through. I cried. Hard. Sobbing and shaking. Which isn’t great when you’re already in pain. “This is too hard!”
My husband calmly said as he caressed my hair and massaged my temples, “You can do this. You are strong.”
The next day, I messaged my general practitioner. He’s been very supportive, albeit not very familiar with Fibromyalgia (as are most doctors). I decided to finally ask if he would prescribe me Low Dose Naltrexone (LDN). After reviewing my request and the link to research on the topic, he tentatively agreed to give me a month’s dose, stating that the research, while promising, was small. When I responded (via messages through MyHealth.Spectrum.org) thank you, I would like to try 2.0mg dose. He was a bit flabbergasted. “It’s only sold commercially in 50mg tablets. Do you know how to get that low of a dosage?”
This is when my online Fibromyalgia support team has been essential. Through my research and their input, I knew more about LDN than my doctor. I first learned of LDN from Donna, on her website Fedup With Fatigue. She gave me a bit of guidance on the dosing and titration that she followed because I knew the 4.5mg was a general ending goal, not a starting point. She also gave me a wonderful resource of knowledgeable people all finding their own way of taking LDN via the Facebook group: Low Dose Naltrexone for Chronic Illness and Infections. Brian Haviland, the administrator of the group, and several members have given me good information on how to proceed.
My general practitioner has no experience with LDN dosing (because this is off-label for Fibromyalgia and most other issues it’s being used for-more on why below). I sent him research reports on the topic and he then wrote a 30 pill prescription for 4.5mg. Being it has to be filled at a compounding pharmacy, I had them send it via fax to a compounding pharmacy in the city about an hour away from us. As kismet would have it, the pharmacy technician that I spoke to, had been taking LDN herself for a while to help her manage Lyme disease. She was very positive about her results. She was the one that suggested that I go with 1/4 the dose. So, I began at 1.25mg.
How to Adjust LDN Dosage Level
Due to LDN being commercially sold at 50mg tablets and even the low dose level many get compounded not being the level the individual can handle (like mine of 4.5mg), those who are in the know have developed an ingenious way to adjust dosage level.
Here’s what I’ve done (on guidance). I put 4 ounces of distilled water (ml is fine, too, but I live in the USA, so…I used ounces) into a jar like the one shown above. I opened the 4.5mg capsule and poured the contents into the water. I, then, stirred to dissolve it, letting it sit a bit, covered in the refrigerator before taking it the next morning.
In the jar, at the bottom of the solution are white particles that don’t dissolve. These, I’ve found out, are the filler in the capsule. I asked the compounding pharmacists what type of filler was used in my capsules. He responded, “Avicel. It’s a filler with low allergy issues.” I’ll talk more about fillers in future posts in this series on LDN because this can be important.
To get the dosing amount you want, you have to do a bit of math. With 4 oz of water added to 4.5mg of LDN, if I take 1oz of the solution, I am getting 1.125mg (4.5/4). However, you could have 4 cups of water and drink 1 cup for the same 1.125mg. Make sense? (Thanks, hubby/math-guy for the lesson.)
My Initial Reaction
Three days in and it became apparent that I had too high of a dose at 1.125mg. This is definitely an individual thing, and one has to find their own path with the information given by others. Some can start with 4.5 mg and have no side-effects from the get-go. Some, can start at 2.0 mg and bump up every few days until they get to 4.5 mg. (I will be explaining that while 4.5mg has been the treatment level most researched; it’s not the optimum level for all people.)
And so, I was not going to fit into the “normal reactions” group (surprise, surprise). I was so dizzy, weak, nauseated, and a contraction type of headache at my temples and forehead. For 3 1/2 days, I was in bed. I threw up several times (which is difficult for me to do because I had the Nissen procedure of GERD that created a knot at the top of my stomach) and didn’t even want to drink water. I was ready to give up.
Luckily, I had the FB LDN group. They gave me encouragement and advice. I decided to press on.
One suggestion that I latched onto was to take a day off to “clear the receptors” and then, start back up on a MUCH lower dose of 0.25mg. And this is what I did.
I still felt horrible all the next day (day 4) without taking any LDN. The following morning (day 5), I wasn’t nauseous anymore but was very weak and tired. With the words of supports in my head and the knowledge that if I don’t push through I will never know if it works for me, I took 0.25mg.
To do this, I dissolved one 4.5mg capsule as described above, but this time, I added it to 9oz of distilled water. I then took only 0.5oz of that solution, carefully drawing off from the top as to avoid getting any of the Avicil filler that was resting at the bottom of the glass jar. The math for this is 4.5/9=0.5mg per ounce/2=0.25mg.
It was a grey day outside, so I gave myself the grace to lie around one more day. I meditated lying prone in bed and fell asleep on and off until 4 pm in the afternoon. And then, it all passed. I felt as if a switch had been turned on, I had recently watched Back to the Future and envisioned my reaction to being much like Marty Mcfly’s coming back from nearly fading away into nothingness.
Who is This?
That night around 8pm, I got a burst of energy. I cleaned up the kitchen which had a pile-up of dishes, folded the laundry that had been sitting in the dryer for a couple of days, and finished writing my first postin a series I’m planning to write on teachers and stress. My husband, who had been working hard all day putting up drywall, was winding down on the couch, reading. He looked up as I was scampering around the house. Smiling, he said, “Who is this? You’re feeling better, I see.” That night, I struggled to fall asleep but wasn’t feeling bad about it. I finally drifted off around 2 am.
Around 6 am, Scout, my tiger cat began his ritual of nuzzling my ear, then cheek, then hovering close enough to my lips that I can feel his breath on them. My husband had already gotten up, so I was there alone for Scout to pester until I was fully awake. This is early for me. 7:30 am is my goal time for getting up and around, but Scout wasn’t having any of that this morning. And to my surprise, I woke up alert. I was able to bound out of bed pretty quickly, feeling very little pain and stiffness that I normally have every day.
I was able to complete some blogging work, straighten up the house a bit, and when my husband asked if I wanted to go for a hike in the woods, I had the energy to say, “Yes!” We went on a four-mile hike. The sky was blue with white clouds and the forest world seemed as if it was awakening from the cold of winter, finally. It felt so wonderful to be outside, hiking, talking with my hubby, and having next to no pain.
I had two more AMAZING days like this. My mood was up, my energy abundant, very little pain (until evening, but not bad-level 4). I was able to get myself ready (shower and even a bit of make-up), practice yoga and meditation, straighten up the house, practice my guitar, socialize by Zoom with my granddaughter, and a bit in person with the neighbor (at safe distancing), rake up our shoreline of layered wet, oak leaves, and then still have the energy to sit in the hot tub with my husband. To top things off, we had a warm-up to 55o and sun, which is a commodity that’s fairly rare right now in Michigan. These were three AMAZING days for sure.
Each of these three nights, though, I struggled to get to sleep. I didn’t feel agitation or racing heart or anything, but I felt clear-headed and alert. I ended up taking THC oil (2 drops sublingual) and with meditation, I fell asleep decently at midnight (headed to bed at 10 pm) and slept until 7:00 (when Scout began to wake me up). Each of these awesome mornings, I woke up feeling clear and energetic. My pain was noticeably more intense and in more areas than normal (Level 5+). However, not long after taking my 1/2 oz LDN solution, it diminished to a level 2+. I was ecstatic at how I was doing and couldn’t stop telling everyone. This, I feel, might bring me back to a level I didn’t think would be achievable.
When researching more about why and how this works, I found an explanation that made sense for all these improvements. “The major mechanism of action of LDN involves blocking the body’s opioid/narcotic receptors for just a very few hours (rather than the all-day blockade caused by the 50mg dosage). Those are the same receptors used by the body’s endorphins. The body responds to this by greatly increasing its endorphin production, and those higher levels last all day — far after the blockade by LDN has ended. Endorphins turn out to be the major normalizer/upregulator of one’s immune system,” states David M. Gluck, MD in My Experience with Low Dose Naltrexone.
After a three-day wonderful weekend, Monday morning came with more pain and a feeling of fatigue. Taking in that I had done a decent amount physically over the weekend, I chose not to be discouraged. Besides, I know that at 0.25mg, I’m not yet at my personal “sweet spot” dosage level. So, I took it easy: blogging work and Yin Yoga with Bernie Clark via Gaia.com. Tuesday and Wednesday of this week were pretty much the same, but less fatigue and more clear-headed.
Today, I skipped my 0.25mg dose as they suggested to clear the receptors. “It makes sense to skip a day of LDN every week to keep it working effectively. Otherwise, Naltrexone and its active metabolite 6-Î²-naltrexol will slowly build up in the system to an ineffective level,” states Richard Farr, a member of the LDN Facebook group. Then, tomorrow, I’m going to up my dose to 0.5mg. I’m planning on staying at this level for one to two weeks (deciding based on how I’m doing day 8 at this level).
Why Isn’t this prescribed more readily?
If this Low Dose Naltrexone drug is so effective for Fibromyalgia (among many other issues), then why isn’t it approved by the FDA and paid for by health insurance? Why aren’t doctors more learned on the subject, and why aren’t they prescribing it more readily?
The answer, unfortunately, is money. Naltrexone has been around so long that it is considered generic. Because of this, Drug companies can’t make any money off of it. Dr. Gluck goes on to explain, “Because Naltrexone has been a generic drug for many years now, no large pharmaceutical company will invest any money in the large research costs needed to gain FDA approval of these special new off-label uses of the medication. No one makes any significant money from sales of LDN! Nonetheless, there have been many small clinical studies of LDN performed at outstanding medical centers, all showing it to be safe and effective. Check my website for detailed information on the research [www.ldninfo.org/ldn_trials.htm].”
And so, I’m tentatively ecstatic to think that I may be able to get back my energy, clear-thinking, and have less pain. That I might be able to actually count on mind and body on a regular basis instead of it feeling like every moment is a roll of the dice.
I will be keeping you updated on my progress. I will not gloss it over. If it doesn’t work, I’ll let you know. Have you ever heard of LDN? If you take or have taken it, what was your experience? I especially want to hear from those who have taken it long-term, say 5 years+. I’d love to hear from you. I’m learning as I go.
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.