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Living with Fibromyalgia

fibromyalgia 2

I thought I would share with my readers a bit about living with fibromyalgia. In 1995, I started feeling fatigued and had a lot of muscle aches and pains — not from overwork or any of the daily physical activities I engaged in. I just felt tired all the time, and my body ached from head to toe. After months of feeling this away, I sought help from doctors; a two-year exercise in frustration and futility. One doctor suggested that it was all in my head; that I was still grieving for my mother who died in 1991. I blew up at this “esteemed” physician, shouting at him in no uncertain terms, IT’S NOT IN MY HEAD!

I was a thirty-five-year-old pastor who, up until that time, could physically do whatever he wanted to do; from playing sports to cutting wood to car repairs to construction work. Why was I fatigued? Why did I hurt all the time? Those are the questions I wanted answered.

In 1997, I saw a new doctor in Montpelier, Ohio. For the first time, I had a physician who actually listened to me. Twenty-five years later, this man is still my primary care doctor, and most all, my friend. Doc wasn’t a miracle worker. He found my symptoms troubling, yet tests came back normal. Of course, the reason for this is that fibromyalgia is a diagnosis of exclusion. Other diseases such as multiple sclerosis and polymyalgia must be ruled out before a doctor can determine whether a patient has fibromyalgia.

For several years, I sponsored and moderated a Christian email discussion list called CHARIS (the Greek word for grace). One of the list participants was a sickly man who was an invalid. After mentioning my health problems to list members, this man contacted me and suggested that I talk to my doctor about fibromyalgia. This “providential” conversation resulted in my doctor diagnosing me with fibromyalgia. Nothing changed for me, per se. Just because you have a diagnosis doesn’t mean that all of a sudden you are on the path to healing. What the diagnosis did say to me is that my pain was not in my head; that what I was dealing with was real.

There’s no cure for fibromyalgia. Symptoms vary widely, and most fibromyalgia sufferers are women. Twenty or so years ago, I drove to the Williams County Fairgrounds to attend a fibromyalgia support group. I felt, at the time, very alone. Few people seemed to understand what I was going through. Even my family was perplexed. What happened to Bruce, to Dad?

I arrived at the support group meeting thirty minutes early. Typical Bruce Gerencser behavior — always early. My children (and Polly) have oh-so-fond memories about my lectures on being on time; that you should always be early. As I sat in the fairground parking lot, I watched as people filed into the meeting. I quickly noticed that there were NO men, I mean none. Every group member was a woman. I thought, “these women will never understand what I am going through.” So, I decided to not attend the meeting and drove home. Years later, I started blogging, and my readers became my support group. I learned that woman with fibromyalgia did, in fact, have a lot to offer me, namely understanding.

No two fibromyalgia sufferers have the same symptoms. On a scale of 1-10, I am on the 10 side of the spectrum. Fibromyalgia has affected every aspect of my life, bit by bit robbing me of the man I once was. People in my life have a hard time accepting that fibromyalgia is an incurable disease; that all that can be done is to manage the symptoms. And yes, I have read the books that suggest otherwise. Just don’t . . . whatever book title you are going to suggest or website you think will really help me, trust me, I know about it. Twenty-five years of dealing with fibromyalgia have helped make me an expert on the disease. I have read numerous books, websites, and studies about fibromyalgia. I have had to deal with well-meaning fools who email me or send me stuff in the mail they believe will cure me. Even when I beg people NOT to do this, they do it anyway. “Just take this or that supplement, Bruce, and your fibromyalgia will go away!” “Have you tried __________?” The ill-informed judgment is that I have not, when, in fact, my primary care doctor and I have tried numerous medications, supplements, off-label drugs, treatments, etc. When I came into the office and said, “Doc, I read about this new fibromyalgia treatment, what do you think?” he always said, “let’s give it a try.” His goal today remains what it was twenty-five years ago: reduce my pain and improve the quality of my life.

Over the years, I developed other health problems, namely osteoarthritis that rages through my body like a wildfire, and peripheral neuropathy that causes numbness and pain in my legs and feet. The unholy trinity of fibromyalgia, osteoarthritis, and neuropathy have so afflicted me that I hurt from the crown of my head to the bottom of my feet. There are no pain-free days, just manageable pain days, and raging pain days that make me ponder killing myself (no this is not a cry for help). Throw in a degenerative lower back problem, a tear in my shoulder labrum, and bum knees thanks to abusing them playing basketball for twenty years, and I can safely say that I am a walking, talking train wreck of a man. I wish things were different for me, but all the wishing in the world won’t cure me. So, I accept and embrace what I call my “new normal.” And my “new normal” continues to change over time. I know Doc sees it. There are those times I have heard a brief sigh from Doc as I share a new problem. Not a sigh of exasperation or impatience, but one that says he knows that I am struggling for my life. I have told him numerous times, “I don’t expect you to fix what can’t be fixed.” “All I ask is that you do what you can for me.” And he has done just that over the past two and a half decades.

My treatment has settled into a rhythm of sorts: pain medications, potent muscle relaxers, sleep medications, light aerobic exercises and walking when I am able, and hot — and I mean hot — baths. The goal is decent sleep and the reduction of my pain to a tolerable level. Some days, it’s mission accomplished. Other days, not so much. And then there are those days when the meds don’t seem to work and muscle and joint pain batter me from head to toe for hours on end. The latter leave me in tears, wishing something, anything would make it stop. In these moments, I feel very alone, even though the love of my life is right next to me.

I am sixty-three-years-old. Thanks to the issues mentioned in this post and other health problems I won’t mention lest I sound like Granny Sue at church cataloging her afflictions, what I can do in life is limited. For years, my well-intentioned mother-in-law would ask Polly if I was “feeling better,” as if I had a temporary sickness that would soon disappear. She finally understands that I don’t have days when I “feel better.” Mom used to be a big proponent of “putting mind over matter.” That is until she had her own health problems; diseases that can’t be magically wished or prayed away.

Most days, I walk with a cane, but when we take trips or I am really fatigued, I have to use a wheelchair. I still refuse to use the motorized carts at the grocery. Irrational pride, to be sure, but I would rather slowly go through the store bent over the handle of a cart than ride around the store as an advertisement for infirmity. You see, people with fibromyalgia (and osteoarthritis) often look “normal.” I can’t tell you the times I’ve gotten glares when we pull into a handicapped parking space. I get out of the car and look “normal” so people think I am taking a parking space away from someone who could really use it.

I still struggle with self-worth as a result of fibromyalgia. In my mind, I am supposed to be the breadwinner instead of my wife. I am the one who is supposed to be taking care of everything. Having OCPD doesn’t help either. Fibromyalgia is a cruel oppressor. In my mind, I tell myself, “Bruce, you can do everything and anything you want to do!” Remember the line from the Waterboy? “You can do it!” And then I hear fibromyalgia and his sister osteoarthritis laughing and mocking me. “Sure, Bruce, go ahead and try.” And try I do, often working myself into bed for days on end from relentless pain and overwhelming fatigue. Fibromyalgia snickers and says, “See, Bruce, I told you! I am the boss in this story.”

One of the hardest things I have had to come to terms with is my physical and emotional limitations. When you spend most of your life as a workaholic, a man driven to perfection, it’s hard to admit that you are no longer in control of your storyline. I certainly haven’t mastered dealing with the realities of my life. I can, all too often, overwork, and this frustrates those who love me. I have never been good at finding balance in my life. I am more of an all-in kind of person, charging hell with a squirt gun, only to find out there’s no water in the gun. I want to think I have gotten better, but I suspect what’s really changed is that Polly is now willing to put her foot down and tell me no or suggest that I take off a day or two or four and rest. I also have friends such as Carolyn, my editor, who recognize my character flaws and try to keep me from self-destructive behavior. Carolyn can recount many times that I texted to tell her that I was going to go do this or that. She wisely encourages me to take it easy; to live for another day. And sometimes Carolyn sends see several smile emojis with a message that says, “you are going to do this anyway, aren’t you?” And sure enough, I do, and the next text she gets from me is one saying I won’t be doing any writing for a few days.

I haven’t worked a W-2 job since 2005. In recent years, I have done some web design and site management work for my sister’s trade school in Arizona. This provides me a bit of income, even though I feel guilty about taking her money. This blog, after expenses, also provides me a thousand or two dollars of income. And now that I am drawing social security, I feel as if I am contributing in some small way to our material well-being. That said, I can’t help but think when I see my wife of forty-two years walk out the door to go to work that I should be the one, pick in hand, heading for the coal mine.

This is the first comprehensive post I have written about my struggles with fibromyalgia. I hope you found it helpful, and it gave you a bit of knowledge and understanding about a disease that affects millions of people.

Bruce Gerencser, 66, lives in rural Northwest Ohio with his wife of 45 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

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    Yep. I get it. You are not alone. I no longer have pain free days, and I sometimes use a cane and knee braces. I’m supposed to use wrist braces, but I forget until it’s too late. The pain doesn’t bother me so much as the cognitive decline. I leave notes everywhere or else I forget everything. Once, I accidentally set my stove on fire (btw, plastic containers are VERY flammable!). And unless they find a cure, it will get harder. Exercise and stretching helps me a little. I had to move last month, and it nearly killed me. You are correct. The thing I hate most is people just not getting that I’m not healthy because they can’t see it. There is nothing to do but keep on going. Take care.

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    I’m so sorry. I’ve had a bad 2 or 3 days with a pain flare, and not seeing my massage therapist (because she kept finding out that people in her orbit had Covid-19) and it being winter is not setting too well with my muscles. I am hoping that, even though I don’t think our country is well on the path to recovery, at least we won’t have a severely mentally ill president in charge of the nuclear codes. Biden is NOT perfect, but I don’t care. So maybe if we don’t have another riot with people dying, I might emotionally be able to be on an upward trend as of noon, January 20.

    (I’ve spent WAY too much time in the last 4 years paying attention to the horror show of Trump and accomplices. While I plan to stay engaged and push for better things, maybe I can take all the time I spend on politics and start reading lots of books again!)

    Hope you feel better soon, Bruce.

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    Bruce, that sounds familiar. Osteoarthritis is bad enough; I have trouble imagining it combined with fibromyalgia. Without serious pain medication, I wouldn’t be able to get out of bed some days, and there are serious limits on how long I can stand and how far I can walk–measured in small numbers. I could barely get from one end of a room to the other without a cane.

    But you do what you can, when you can, and hope that tomorrow’s better. I hope you have some better tomorrows soon. Hang in there. What you’re doing may not be all that you wish you could do, but your readers (the non-Evangelical ones, anyway) recognize the good that you bring to our lives.

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    I am sorry, Bruce. It’s amazing that you are able to do what you do given that constant pain is your unwanted partner. My 1st cousin has fibromyalgia – she will be 40 soon, but she has had it since her early 20s. So many people have accused her of faking it, of exaggerating, of being weak…..ugh. And somehow she is one of the sweetest people. Fortunately, she has managed to work.

    You’re fortunate to have a doctor who listens and cares.

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    Brian Vanderlip

    Hey Bruce, Practice resting and see if you can beat me at it! I have this theory that all those damaged by the fundy virus are unable to relax without guilt making it impossible to sustain or nearly so. I sit and read for awhile and then get up because I feel guilty… Just for taking it easy with a book! That guilt-free time of rest and reading is what I wish for you, my friend and the strength to venture forth with your camera. Pope Brian has absolved you of your ignorant disdain for cheese with burgers and your foolish nonsense about toilet paper rolls being hung any old whichway.

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    Catherine A Kirk

    I also have fibromyalgia, arthritis in my knees, and I had back surgery about 10 years ago for a degenerative disc/ herniated disc. I am 43. I have 2 teenaged daughters. I was a single mom for much of their lives and not working was just not an option i was willing to take. Every day is a struggle. Some worse than others. I look fine on the outside. I had doctors tell me all kinds of crazy things before my diagnosis. Nobody wanted to take my claims seriously. I still feel like that is true in some respects, only now instead of saying my symptoms are in my head they just automatically get blamed on the fibromyalgia. “Oh, you have been vomiting for three days? That’s just the fibromyalgia.” I have felt like a human guinea pig at times too, with vitamins and acupuncture and physical therapy treatments. Now I am on a mix of pain medications and muscle relaxers to manage my symptoms. There are days I cry in the parking lot before dragging myself in to work. I just do the best I can and dream of the day I can quit.

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      Catherine, I am so sorry to hear this. I too look fine on the outside, and I am also pretty friendly so no one can tell how bad I feel most of the time. Nausea can be from fibro, but that doesn’t mean it is. I will say that I am queasy quite a bit, and stress will make it worse. I’m 62 and due to advanced osteoarthritis may not be able to work again, as it overlays my moderately severe fibromyalgia. When I did work I felt bad every single day, so I hear you about feeling awful at work.

      I will tell you this: if you can keep your job you are doing well. I ended up have to quit jobs (due to stress and pain) and also found out that it is so much worse to learn a new job while hurting. I hope you can also take advantage of FMLA. Sometimes that is a life saver, and sometimes the employer is too small for it to apply, or if you’re only part-time it may not apply either.

      Now, if you were more concerned with keeping your health insurance, I have been able to get pretty good health insurance through the marketplace. When my husband retired that threw us off his insurance because we no longer had it, although at least he got Medicare. My youngest son (who also has fibromyalgia pretty bad, which really saddens me) is on my insurance, and this year it is pretty good. It was a pain to find new health care pros as the HMO we’re in restricts those. But at least we can think President Obama for this, and with Biden in office we can hope the ACA is attacked like it was under Trump.

      Anyway, good luck!

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        PS Catherine: I also do a mix of therapies, meds (gabapentin and cyclobenzaprine), massage, TENS unit, and some vitamins and supplements. I used to do regular chiropractic appointments until my neck vertebrae were fused. Surgeries on people like us don’t always turn out to be an unalloyed blessing, as then our sick bodies have to recover and that is a real trauma.

        Oh, I also use a wooden roller for spinal adjustments. Something in my back went sideways after mowing the lawn using the riding mower! I couldn’t believe it but I am old LOL. Anyway, the roller can be quite painful but can also be a blessing, as it will relax the muscles by the spine, which can give a relaxing effect on all the muscles over time. Plus (for me) with several treatments using the wooden roller, the vertebrae will move back into place. It isn’t as immediate as a chiropractic treatment, but with the muscles relaxed the vertebrae will stay in place more.

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Bruce Gerencser