Each Wednesday I share the story of a different Fibro Warrior. This week I’m sharing the story of another of the guys with Fibro – yes, guys get Fibro, too. Joshua Hutchinson lives in Gilbert, AZ with his two dogs, a Border Collie/Australian Shepherd mix named Bonnie and a Boxer named Sugar.
[Tweet “Fibromyalgia doesn’t only impact women, men suffer, too. via @HutchWrites”]
Tell us a little about yourself:
I’m unemployed and receiving social security disability income. I love to read and write. I’m trying to write a novel, and on the side I’m creating a Salem Witch Trials wiki. I also enjoy bicycling, hiking, and camping. Unfortunately, I’m only able to ride my bike on average once a week, and I’ve only been camping once in the last 6 years.
When were you diagnosed?
I’ve been diagnosed twice (and undiagnosed in between). The 1st diagnosis of Fibromyalgia came in 2003. Then my symptoms subsided from 2005-2008 (though I continued to have pain in head, neck, and shoulders) before flaring up again.
What lead up to your diagnosis?
I had a history of headaches and joint pain in childhood and adolescence, in addition to depression, which I hid. In my senior year of high school, I began to feel ill almost constantly, with severe headaches. Later, in my sophomore year of college, the symptoms became more intense. I was frequently treated for sinus infections, but X-Rays and CT scans revealed no sinus problems. After college, I continued to suffer severe fatigue and widespread pain, but MRIs and other examinations revealed no underlying problems. I saw an array of specialists, including a neurologist who observed that she’d “never seen a 23 year old man with so many problems.” Apparently, however, these problems were not in her arena, so I went on to see more ENT’s, allergists, and others. I even had a mammogram. The only issues discovered were gynecomastia and allergies to tree pollen. In 2003, my primary care doctor told me it was “all in my head” and referred me to a psychiatrist, who treated me for the depression I’d been attempting to repress for since I was 11. At some point that year, I was sent to see a rheumatologist. She conducted the trigger point test, and I just made the cutoff for Fibromyalgia.
My next major flareup began to come on late in 2008 and continues to this day. This time I began with a psychiatrist and then, in the latter half of 2009 went through pain management, chiropractic, and physical therapy. When those didn’t help, I. In January 2010, a rheumatologist declared that I did not have fibromyalgia, arthritis, or anything else she could treat. After that, I was examined by neurologists, endocrinologists, ENTs. I was only re-diagnosed with Fibromyalgia in June 2013.
What was your life like?
When this current flareup began, I was very active. I had a serious job. I rode my bike every day. I hiked often. I had a full social calendar. I did a lot of volunteer work. I had my own home. I had my own car. I lost all of that.
I was working in management in the finance department of a large corporation. Outside of work, I also did a lot of volunteer work with my church, making visits to prison inmates, leading a youth group, facilitating small group studies, and serving on the congregation’s board of directors. In 2008, I was president of the congregation. At the same time I was Manager of Accounts Receivable and Credit, being courted by the company’s new treasurer for a position at headquarters in Chicago.
I enjoyed many outdoor activities, primarily trail running, hiking, and backpacking, until I took up cycling. By early 2009, I was a road cycling enthusiast, riding nearly daily. For a while I was riding 30-50 miles every morning before work. One day I road 200 miles just because I could. Now I have to force myself to get on the bike. Although I still love cycling, I struggle to get in one ride a week.
In 2009, I was confident that my pain management plan was working well, so I bought a house, having previously lived in an apartment.
In June 2010, my employer suggested that I work from home for a while until I got better. Of course, my condition never improved. I worked from home for 3 months and then returned to the office in September. The next June I was pressed to go on short-term disability. After that coverage ran out, I was unable to return to work and was terminated in January 2012. At that point I moved in with my parents and applied for Social Security. However, I did not receive a decision about SSDI until January 2014.
How did your family initially handle your illness?
Like me, my family was confused by my array of symptoms, which don’t fit with any better-known illness.
What do you feel is the most challenging aspect of Fibro?
Fibro Fog. In the last few years, I think that I’ve forgotten more than I ever knew in the first place. I struggle with concentration and find that I’m fortunate to have 15-30 minutes of clarity in a day.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have depression, anxiety disorder, IBS, and seasonal allergies. The depression initially made it difficult to endure the isolation of spending so much of my time at home. I still have ambitions and try to work on various projects. At times the anxiety overwhelms me, because I have so little healthy time to work, and there is so much I want to accomplish. The IBS and allergies are just extra aggravations. I generally don’t treat my seasonal allergies because I figure I have enough to worry about, and I don’t like to be on too many medications at once.
What (if anything) have you found/ done that has improved your symptoms?
I haven’t found much that improves my symptoms. Medications take a bit of the edge off, and caffeine helps me be alert but doesn’t prevent me from dozing off midday. Sleep is important, but that just keeps my symptoms at normal levels.
I’ve tried the gluten-free diet, juicing, and other holistic approaches but haven’t found them to provide any relief.
I feel my best when I’ve had 10-12 hours of sleep and I am lying flat on my bed or fully reclined in a comfortable chair.
How open are you with friends & family about your illness & symptoms?
I don’t hold anything back, but I also don’t talk very much and when I do, I usually don’t want to talk about my symptoms.
What is the best advice you’ve received regarding Fibromyalgia?
Honestly, I can’t remember receiving any truly beneficial advice. Nobody understands it. The most important thing for me was just to accept that Fibromyalgia is a real disease. Life has improved since I accepted the diagnosis and stopped chasing windmills.
[Tweet “The most important thing for me was just to accept that Fibromyalgia is a real disease. @HutchWrites”]
What was the worst advice that you followed?
I gave myself the worst advice, which was to have a drink or two every night to take the edge off the pain. (I switched off that plan 3 years ago.)
What is your favorite way to cope with your life as a spoonie?
My dogs have been tremendous. It’s nice to have companionship when I spend 95% of my time lying around. I especially like my dogs because they’re generally content to sit quietly.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned that anyone who can endure torture every day can get through whatever life throws at him.
[Tweet “Living with chronic pain teaches you to get through anything life throws at you. @HutchWrites”]
What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
Fibromyalgia is real. Don’t believe the naysayers, and don’t let anybody tell you it’s all in your head.
[Tweet “Don’t let anyone tell you that #Fibromyalgia is all in your head. via @HutchWrites”]
Is there anything else you’d like the readers to know?
I just want to stress that Fibromyalgia doesn’t only impact women. Men also suffer, and we need to stop hiding behind machismo. Male voices need to contribute to fibromyalgia awareness efforts, to let other male sufferers know that they aren’t alone.
Connect with Joshua on Twitter at @HutchWrites – He also tweets about the Salem Witch Trails via @SalemWitchHunt, and I’m working on a wiki at SalemWitchipedia.org
If you are a Spoonie, a Fibro Warrior, or a caregiver for a spoonie, I’d love to share your story. If you are interested, please contact me.
ChronicMom says
Great to hear from a man with fibro. It’s such a predominately female disease it seems like men don’t get heard from very often.
Julie says
I’ve been trying to include guys as often as I find them; they are rare but deserve to have their stories told.