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.
We all know the stereotype of men when it comes to their health. They are less likely than women to visit a doctor and to downplay or neglect to report their symptoms when they do. I hate stereotypes. Yet, they tend to stem from some truths.
So, I will only talk about the men I know personally. Unfortunately, even my husband and son fit the above stereotype. When I raise a concern, like my husband stopping of breathing during the night, I’m met with jokes and the implication that I’m overreacting or don’t know what I’m talking about.
We even discussed this on Father’s Day. We talked about how our culture still promotes the “masculinity myth” of being tough and independent, not needing help. In the WebMD article, Timothy Smith, professor of psychology at Brigham University explains, “Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.”
“Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.” -Tim Green, Brigham Young University #MensHealth #Fibromyalgia
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It’s concerning that men are dying on average 5-years sooner than women in 2020 whereas in 1920 women were only living on average 1-year longer than men.
Men and Fibromyalgia (FM)
Recently, I was able to talk to Chris Hamilton, a man living with Fibromyalgia. I met Chris through the Facebook Group, Fibro Connect. I immediately appreciated his honest and often humorous responses to questions and posts in the group.
He is a father of two grown children, living in Florida with his wife and working full-time in the procurement department of one of the Big Four Accounting Firms.
Before Fibro, Chris was physically very active participating in Tough Mudders and marathons.
I’m happy to share Chris’s story. He represents a man who is outgoing, physically active, successful in his career and family life, yet he did go to the doctor to find out what was going on. But, unfortunately, so many men choose to stay silent with chronic pain or, worse, are met with disbelief or indifference from family, friends, and even doctors.
While Chris is new at living with Fibromyalgia, I sense in him a strong commitment to live as FULLY as he’s able. His symptom experience reflects my own in that the pain is something we can usually manage, but the brain fog and fatigue are what really bring us both to a halt.
Chris focuses on exercising and eating healthily to mitigate the FM symptoms. In fact, he’s running again. Already, he has signed up for three half marathons for this coming winter!
Please, welcome Chris to the PFL Community:)
A Mayo Clinic research report first published in 2012 stated that “The discrepancy between the number of people reporting fibromyalgia symptoms and the number actually diagnosed with the condition was greater among men… Twenty times more men appeared to have fibromyalgia based on their survey response than had been diagnosed.” What are your thoughts? What is your own experience? What would you say to a man living with constant pain all over but who hasn’t sought a diagnosis?
I’d love to see more inclusion. I keep seeing studies about such and such a number of women. It feels exclusionary. More than that, though, if there are differences between men and women, it might add to our knowledge and show useful patterns.
Guys, especially in the west, aren’t supposed to be weak–not that women are. But the inability to provide and take care of things is so central to masculinity that the toll is as emotional as physical–and guys aren’t good at the emotional part. Among the few guys with Fibro I interact with online (and that’s very surface level), there seems to be a lot of anger and resentment–at the condition, at the people who don’t believe them (sometimes including spouses and family members), and at their inability to do what they believe they’re supposed to do. It strikes at the heart of manhood similarly to the inability to be a mom might strike at women. But I think women are much better at showing vulnerability and getting help than men.
To a guy who has pain and hadn’t gotten it diagnosed, I’d say it could be Fibro, that it’s not a woman’s disease, and that knowing is better than not knowing.
I’d also say that there’s no more shame in this than in needing glasses to see. You didn’t choose this, and you didn’t make it up.
Finally, I’d say to guys–and really to anyone, exercise as much control as you can. Take every win possible–and recognize it as such.
Related Reading:
- The Ideal Medical Configuration for Treating Chronic Pain
- Fibromyalgia: 15 Bloggers Share Top Tips for FULLY Living
- Finding Your Passion: Nourishing the Soul
What was life before (and then after) FM?
This is a long answer (sorry).
My actual diagnosis was in February of this year (2021), but I crashed in a humongous way back in 2015. I was on a Project from Hell™ at work, and I was in, by far, the best shape of my life. For my birthday in October 2014, I ran 17 miles. But I got up on February 16 and did a challenging workout but not hard, yet I was nauseated.
From there, I crashed hard. I got so I couldn’t cross the living room without stopping to rest. For few days, I worked from bed because a very good friend was the only other person on the project, and I’d have left her alone to deal with it. I was diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome).
Then, after almost exactly seven months, it went away. Looking back, I think it was Fibro, but the pain was never an issue.
Then to Now
I never regained the shape I was in after that episode in 2015, but I did complete a half marathon last February. I had to nap a lot in the evenings. My diet was better than in my twenties, but not by much, and I was inconsistent with exercising, largely because I overdid it and kept getting injured.
After my diagnosis this February, I got the Mayo Clinic book and devoured it. I decided that there were changes I wanted to make to my life anyway–specifically around diet–and now I had to make them.
In 2015, I kind of allowed everything else–being sick, work, whatever else–dictate terms. It was a horrible year, so I decided I wasn’t going through that again. Now, I’m much more careful about what I eat, but not nearly perfect. I track everything. I’ve moderated the exercise. I do something for at least half an hour a day, even when I feel horrible.
I’ve actually lost a decent amount of weight as a result and fit in a lot of clothes for the first time in years. I’ve also worked to modify my approach to stress. Again, it’s asserting control over what I can influence and deciding whether something’s important enough to make me crash. I’m not accomplished at that yet, but I’m headed in the right direction.
Related Readings:
- Come So Far! Last Summer to This
- You’ve Gotta Be Kidding! Looking Back at Childhood Fibromyalgia Symptoms
- What’s Good Enough?-Acceptance to Eliminate Shame
What caused, if you know, the chronic pain and when did it start?
My mom and sister have Fibromyalgia, and the research seems to indicate it could be hereditary. I can’t think of any early childhood trauma, beyond the normal. I was under a lot of stress in 2015, and this past year’s been stressful for everyone, but I can’t identify a specific trigger for the Fibromyalgia symptoms I have now.
In December of 2020, I started having really severe bone pain out of the blue, all over my body, enough that I was missing work and not doing much of anything. I had one afternoon just before I got diagnosed where it was a 9 out of 10 much of the time–and I had to get work done, or so I felt. (Turned out the sun would’ve come up the next morning if I didn’t, so lesson learned.)
The pain, mostly vanished after I knocked off the Coke Zero. I miss it, but I like being pain free a lot more than I like Coke Zero.
Related Readings:
- The Frozen Fascia of Fibromyalgia: Myofascial Release
- Families are Complicated: Using DNA Tests to Discover Your History
- Fibromyalgia Forced Me to Look Inward
How were you diagnosed?
I’m so fortunate in this regard.
I didn’t see my doctor right away, but having all over bone pain is a big enough deal to make me go pretty quickly. I gave it a couple of weeks, then made an appointment with my primary care. She recommended that I see a rheumatologist, and there was the one I had good experience with previously in 2015, so I chose to go see him. The big wait was to get in to see him, which took four or five weeks.
At the time, it seemed like forever. As you might imagine, my brain went to town on the ambiguity about what was wrong. I was afraid I had bone cancer, and it metastasized or something. When I finally got in for my appointment, the doctor asked me some questions about my symptoms, and then started poking me in the tender spots, asking if it hurt.
It wasn’t comfortable, but it wasn’t exactly painful. He told me that if I were a woman, I’d be jumping through the ceiling and that I had Fibro. (I’ve since read that pain tends to be more pronounced in women). It was about two months between when the pain started and when he gave me the Fibromyalgia diagnosis.
Getting the diagnosis was almost a relief, especially after reading the Mayo book, which gave me a starting point to manage the Fibro symptoms that I was experiencing.
Relative to other people, I was incredibly fortunate to be diagnosed so quickly. My quick diagnosis and relatively mild case make me really humbled by the people who manage to go on day after day for decades without any real relief. In my book, those people are warriors.
Related Readings
- Dealing with a New Chronic Illness Diagnosis
- May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis
- What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1
What is your day like living with chronic pain?
What is your pain level generally?
Pain is usually between 2-4, but the fatigue is higher and the brain fog is annoying as hell. It’s no fun forgetting what you’re talking about in the middle of a sentence. That’s scary, too. Alzheimers? If I have to chose, I’d take Fibro over that every day and twice on Sunday.
Does it impact what you do during the day?
Most days not until after work. Evenings can be tough for me. Late afternoons are a chore sometimes.
Crash days (as I call them) are different. They come and go, randomly. There’s no seeming pattern. Right now, I’m in a flare where my pain that’s lasted a week already. My pain is usually in the 1-3 range and right now it’s between 4-6. To be honest, I panic a little because I’m afraid it’s going to stick that way. This crash is different, because for me usually, it’s fatigue and malaise, not more pain.
In terms of how I handle flare days, it depends on how bad I am. If I can manage it, I work. I try really hard to get full days in, but if I run into a series of bad days in a row, I’ll just take the rest–a sick day or part of a day during the week, or just a couch day on the weekend. I have no idea what causes them, but if I knew, they would never happen. This Fibro-thing kind of does what it wants.
Controlling What I Can
What I can, I work to control. So, I’ve focused on my diet and exercise.
My diet is a lot cleaner than it used to be, but I still need to work on cleaning it up more consistently. I eat a lot more veggies, that’s for sure.
I’ve exercised every day since I was diagnosed. Haven’t missed one. It’s not that long (19 weeks today), but I’ll walk for at least half an hour when it’s really bad. This morning I ran five miles, but I’m feeling a fair amount of pain.
Even when I got my butt kicked by the COVID vaccine, I didn’t miss a day. Part of that was the luck of the timing, though. The bad part of my reaction to the vaccine didn’t happen until the late morning of the day after I received the shot. The symptoms cleared up by the following evening, so I could exercise despite my reaction that caused amplified Fibromyalgia symptoms.
Related Readings
- Managing Chronic Pain is a FULL Time Job
- Confession: I’m Not Well Today
- Mother’s Day Memorial: A Mental Health Check-In
Has It Impacted Your Relationships?
Because I became ill (and diagnosed) while COVID was at its peak, things for me aren’t much different than they are for everyone. COVID distancing built a little wall between me and those outside of my home. I love connecting with friends to play virtual Cards Against Humanity once a week, but because it’s in the evening, it’s hit and miss for me. About half the time, I just can’t play because I’m not up to it. Often I leave early even when I do show up due to feeling too fatigued and foggy to continue.
I’ll say my wife has been amazing about it, and given the family history, I get a lot of support from my parents and sister. I’m also blessed in that the people I work with and for have been amazing, too. That support is so big in this wellness journey. I don’t know how I’d manage without them.
Related Readings
- A Love Story: Stronger Together
- We’re Together In This: 2021
- FULLY Engaged Grandparenting Despite Living with Pain
Do you have a doctor(s) that knows how to help you live your life fully?
No, unfortunately. My primary care and my rheumatologist are both supportive, yet they don’t how to guide me in my day to day management of symptoms. I’m strongly considering hiring a health coach who knows about Fibromyalgia.
How has life with chronic pain affected your working life and finances?
I let the people I work with know, but I haven’t had to miss enough work that it’s made a difference. That said, it could all change tomorrow. And on bad days, I worry that I won’t make it to retirement.
Due to my job, I’m really blessed to have great insurance. So, I haven’t struggled with costs from doctor’s appointments and the like.
What do you do to manage your pain?
The most important thing for me has been eliminating Aspartame. I try to eat reasonably and get my sleep. I think exercise helps, too.
The hardest part is keeping a positive mindset. I wasn’t a super positive person to start with, so this is an area where I have to really concentrate. It all works together–which is why I’m considering a coach so that I can be better.
Related Reading:
- Growth Mindset: A Teacher’s Approach to Healing Chronic Pain
- September is Chronic Pain Awareness Month
- Five Steps to Take When In Pain
Do you have any advice for others who live with chronic pain?
That answer has changed. At first, it would’ve been to educate yourself. But there’s so much information out there and not a solid basis of one approach over another that I’ve backed away from that. For instance, most of what I’ve read says leafy greens are the best–and then the anti-copper approach says they’re the worst.
Also, I’m reluctant to advise because I’ve been so fortunate in my circumstance. I got diagnosed quickly. I’m getting all kinds of support. My case is relatively mild. I can’t advise people whose lives are a living hell and who don’t have all the support I have currently.
If I had to say something, it would be to figure out what you can control and be unyielding in controlling it. Listen to your body. And find someone to listen to you, even if it’s a Facebook group or something like that. And guard your mindset because it’s the key.
I know everyone is different, but my approach has been kicking Fibro’s ass every chance I can get. Anytime I accomplish something hard, whether it’s a long run (which I’m blessed to do–usually 6-8 miles) or getting through an afternoon that’s really bad, it’s a win. I’m inclusive in my definition of winning.
Related Readings:
- Just Breath and Other Ways to Rewire the Pain-filled Brain
- Going from PAINfully Living to PainFULLY Living
- The Benefits of Nordic Walking for Those Living with Fibro and Chronic Pain
While I’m not concerned about my husband and son having Fibromyalgia, I am concerned for their heart health and other issues. How can we, as a society and health care system, get our men to be open in seeing the doctor and getting help when needed? How can we help men living with Fibromyalgia find more support and acceptance?
Here are a few resources I suggest checking out:
- Fibromyalgia in Men: Important Facts About an Overlooked and Misunderstood Condition
- Struggling To Stay Afloat-Jason Herterich Tells His Story of Developing Fibromyalgia
- Men’s Health Awareness Month
- Convincing the Man in Your Life to Get a Checkup
- Living With Fibromyalgia As a Man
Thank you for visiting my blog today. I am committing to posting once a week by Friday. However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.
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