Fibro Warrior Wednesday: Nick Lutes

Guys get Fibromyalgia, too! And this week’s Fibro Warrior Interview is with one of those guys with Fibromyalgia, Nick Lutes from West Allis, WI. He was diagnosed in August of 2013 at the May Clinic in Rochester, MN, at the ripe young age of 34. Nick is divorced, and has two dogs and a cat. He loves all things hockey, working with his hands to repair and create things, cooking, baking, and grilling, and watching and playing sports. He also loves music, movies, cars, and problem solving. (Be careful what you wish for Nick!). Let’s get to know him a little better.

What lead up to your diagnosis?
I started missing work, was always tired, had no energy, and was in lots of pain in early 2010. Saw Dr for what turned out to be IBS in June 2010, and eventually suspected Fibro, or more, in September 2010. He started testing to rule out MS, and other various possibilities with symptoms similar to Fibro. One MRI revealed a severely herniated disc between my c5-c6 vertebrae in my neck. I had a spinal fusion surgery in Jan. 2011, but this was just a fluke find and not the cause of my pain and lack of energy (though some numbness and tingling in my extremities was reduced and flexibility increased to nearly 100%.)  Many things were ruled out during 2011, but no one had a definitive diagnosis. Most were stumped or disinterested in actually figuring it out. I saw over a dozen different specialists that ran many tests, put me on various meds to see what worked, and was pretty well put through the ringer in every imaginable way.

What was your life like when all this started?
When things started to decline, I was married, working as an HVAC/R service tech, coaching youth hockey, playing adult league hockey, renovating my home, and very active with friends and family.
How did your family initially handle your illness?
My wife and family pretty much thought it was all in my head. They felt I was being lazy, seeking attention, or a combination of each. No one believed anything was seriously wrong with me until I was no longer able to play or coach hockey (I’m extraordinarily passionate about the game of hockey). Once they found the herniated disc in my neck, some started to believe that I wasn’t making things up, and as I further declined health-wise, more saw it with their own eyes and finally believed what I was saying.

Did your divorce stem from the chornic pain issues and disbelief?
Yes. She took a job in Dallas, Texas and thought I was faking things as a ploy to stay in Wisconsin (even though my house didn’t sell, so I planned staying until it sold). Only months later after I filed for divorce and had my spinal fusion surgery did she start believing there actually was something wrong, and showed some uncharacteristic remorse.

What do you feel is the most challenging aspect of Fibro?
y most challenging aspect of fibro has actually been the huge decline in cognitive function. Being unable to do anything physically was a huge hit to my life, but when my immaculate memory and sharp mind began to bog down and always seemed gummed up and slow, I felt like I could be of no use anywhere to anyone. After all, if you take away physical and mental abilities, you’re not left with much to work with. I’ve since researched and worked at finding answers for my problems and have been trying to figure out how to improve things or reverse the bodily decline altogether.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Hopefully I recall everything, but Fibro fog often leaves me a few paragraphs short of a complete story….. IBS, spinal stenosis, moderate chronic fatigue syndrome, migraines, possible Raynauds syndrome, and possible Restless Leg Syndrome.
I have learned, through trial and error, to control my IBS through my diet and activities.
My spinal stenosis prevents me from engaging in anything too physical where there’s the possibility of a neck injury– which could be catastrophic. I guess it’s a good thing in limiting me from pushing too hard physically, but I deal with constant pain down my neck and into my shoulders, shoulder blades, and into the rest of my back, which results in constant headaches of varying degrees. This can often lead to migraines. Fortunately the migraines are usually held to 1 or 2 a month, but if everything else starts snowballing out of control, a migraine‘s usually not too far away.

The moderate chronic fatigue syndrome leaves me with virtually no restful sleep each night, constant feelings of fatigue, and that feeling of a post-workout build up of lactic acid in my muscles. CFS seems to amplify many of the Fibro symptoms. That feeling of having the flu, post-workout “burn”, and a bad hangover all at once is a daily experience, it’s just a matter of “to what degree is it today?”.

Raynauds runs in the family, it’s just been a guess by my mom, who’s a retired nurse of nearly 40 yrs. She has it, and from what I’ve described at times with my skin turning odd bluish colors on my hands and feet, I guess it’s similar to what she experiences. Like many with Fibro, my body temp is constantly fluctuating, but my hands and feet vary the most, and often at illogical times. Middle of winter, and my hands could be toasty and normal, or ice cold while in a heated building…. middle of summer and my hands and feet will feel ice cold– even outside on a hot day. I typically start in shorts and a shirt, and add layers from there, but I’m often in attire appropriate to another season.

Having kicked enough objects and people in my sleep, and my occasional and uncontrollable twitching– sometimes as if being hit with a jolt of electricity, it’s been implied that I may have RLS. It’s apparently not bad enough to warrant further testing or meds, but having voiced concerns about certain incidents, it’s been suggested by more than one Dr that it may be RLS.

What have you found/ done that has improved your symptoms?
I’ve done all the typical things that one’s supposed to do, like eat a healthier diet, get on a regular sleep schedule, stretch, stay reasonably active each day, not “over-do it” if possible, etc. None of the “Fibro” meds worked for me (cymbalta, lyrica, savella), but tramadol and flexiril have given me relief from that 10 out of 10 pain each day,  and provided me with consistency. My absolute best days are only a 6 out of 10. It leaves me struggling each day to keep up with a healthy person’s schedule, but it’s given me some sort of life back. I’m able to do some woodworking in my basement, get some of the daily and weekly chores done around the house, work on landscaping when it’s not too hot out, and get out of the house and do more with family and friends. It’s not ideal, but it’s better than lying on the couch all day trying to not move.

Has your love of research and problem-solving helped you on this journey?
My problem solving and research has educated me to a point of being more knowledgeable about Fibro than some doctors. I’ve made more than one Dr go quiet when calling them out on something, or correcting them. I’ve learned a lot about things unique to my body, and how it responds to certain drugs, foods, and treatments. I’ve gotten good head starts on diet changes, stretches, exercises, supplements, etc. When I got to the Mayo Clinic, I already knew or had implemented half the info they were teaching us in the multi-day class. It was nice to reaffirm that I was on the right track with things and ahead of the game on a lot of the trial and error processes needed to tailor treatment and management to me specifically. Because I didn’t respond to the existing Fibro meds, I’ve tried paying attention to new developments in research and treatments that may bring me further relief.

How open are you with friends & family about your illness & symptoms?
I’m 100% open and honest about my symptoms and circumstances daily, as well as long term. Naturally some people stopped asking about things because they get annoyed that I’m “not better yet”, but for those who care and inquire, I tell it like it is. I try to minimize unnecessary details and stick to what’s relevant, but will answer whatever if asked specifically.

Do you blog about your illness? If so, what inspired you to do so?
While I don’t technically blog about things daily, I have two public Facebook groups (“Fibro for Us“, and “Fibromyalgia: Not Just For Little Old Ladies Anymore“, that I openly discuss and share my experiences, links for relevant information, and post useful or humorous pictures. I have a private chat group on Facebook, as well, that’s affiliated with “Fibro for Us”. My girlfriend helps run both Fibro for Us pages. She gives encouragement, posts relevant info and pics, and writes a column called “From the Outside, Looking In”. It addresses the “Fibro supporters” out there and gives insight on understanding Fibromyalgia, as well as input on what they can do to help the Fibro fighter in their life. She does this in hopes that Fibro fighters won’t feel so alone, excluded, misunderstood, or overwhelmed. I’ve also recently taken to Twitter (@NickFFU) in order to expand my reach and help more people if possible. I took up all of these responsibilities so I could help others avoid the living hell I went through if at all possible. It also acts as a nice distraction daily and makes me feel useful and relevant.

What is the best advice you’ve received regarding Fibromyalgia?
The best advice I’ve received about Fibro is to go with my gut instinct about what I’m truly capable of doing each day. It’s so imperative to avoid over-doing it, and no one knows my body better than I do.

What was the worst advice that you followed?
“Keep your head down, push through it, and tough it out”

After visiting the Mayo Clinic, I found out that it was possibly the worst possible thing to do if you’ve got Fibro. Lesson learned.

What is your favorite way to cope with your life as a spoonie?
Movies. I can’t concentrate enough to read most of the time, and my eyes get tired pretty quickly (imagine that, I guess those muscles get tired too.) Video games don’t always work that well, and anything else I’d do would likely tire me out way too much to do it daily. Movies allow my mind to escape and immerse itself into whatever movie it is that I’m watching. It’s the best distraction I’ve found….unless I’m in the car, and then it’s obviously music.

What is one thing you’ve learned about yourself since your diagnosis?
Considering I’ve had Fibro symptoms since I was a teenager, and things got slowly and progressively worse, I’m way tougher than I ever gave myself credit for. School, sports, work, coaching, etc…. I had to do it all at an unknown disadvantage, yet I still managed to excel and succeed in everything I’ve taken on. It’s been tough to lose so much over the past few years, but I’ve never thought of giving up or “wanting out”. I wasn’t raised that way, and I know I’m tough enough to keep moving forward no matter what the circumstances.

Now that you’ve gotten to know a bit about Nick, go check out his Facebook groups. Fibro For Us, Fibro Talk Everyone, and the Fibro For Us Chat. You can also contact him on Twitter and via email at barkingtater@yahoo.com

This post is part of the weekly Fibro Warrior series, make sure you don’t miss a single interview by signing up for my email newsletter. If you are a Fibro Warrior, and would like to share your story, please email me.