There are more guys with fibromyalgia than most people think. John Eisner (aka @JohnnyTribs on Twitter) is one of those guys. John is from West Bend, WI. He was diagnosed with fibromyalgia in March of 2008 at the ripe young age of just 28.
Tell us a little about yourself:
I’m single. I was engaged before I was diagnosed and had any symptoms. As soon as things really started progressing, I ended up losing everything. I was working in an Aluminum Foundry, a very hot and dangerous line of work and after about a year and a half of putting my body through immense physical exertion I began having a very sharp radiating pain in my left shoulder. It was due to an extended nub of bone on my clavicle bone that was literally being ground down and creating bone spurs in my rotator cuff. I needed the surgery and it did not go well. I wasn’t healing afterwards and the pain was so intense because they had to shave off about 6mm’s of my bone.
My job let me burn up all vacation, sick pay, gave me every chance to get back to work but I just couldn’t and ended up losing my job. I haven’t been able to work since. I don’t have any children, have always had tons of pets but have bounced around a lot lately so had to let mine go with my ex when she finally left me.
I am a musician. I play drums, guitar, I DJ’d in a night club, went to lots of concerts. I was always the life of the party, a complete extrovert!
What lead up to your diagnosis?
After the shoulder surgery, I began to notice that I was very fatigued suddenly. I attributed it to just everything else that was going on. Then the all over body aches really started, the acute pain with minor touch, the achy days where I just wanted to stay in bed. I had a 2nd shoulder surgery in 2009 in hopes to fix the problems but it all just got worse. I was then referred to pain management, and after describing my symptoms they sent me to a Rheumatologist in June of 09 and he did xrays, blood tests, and then a pressure point test. His conclusion was fibromyalgia as well as a severe vitamin D deficiency.
How did your family initially handle your illness?
I have other family members that have FM, so some really understood. There were some, like my mom that just didn’t really seem to have much of an opinion, but my Dad straight away said it was all in my head.
What do you feel is the most challenging aspect of fibro?
Despite the Chronic pain, I struggle most with restless sleep, fatigue, and the fact that I never know if tomorrow will be a good day or a bad day. My friends would make plans to do something, but then I would turn out to have a really bad day and all I wanted to do was stay in bed so I often cancelled my plans with them. They didn’t understand, I think some thought I just didn’t want to hang out with them, but in reality that couldn’t have been further from the truth!
Do you have any other co-existing conditions? If so, what are they and how do they impact your fibromyalgia?
Unfortunately I have several health issues that have greatly been impacted and also impacted my FM greatly! I had to have a knee surgery to fix my kneecap that was basically crooked and they did what they call a lateral release. I was told that this surgery always seems to have a very high outcome of major swelling. Well that swelling just kept getting worse and worse and my skin started getting dark brown like freckles, but then the bruising came and the deep discoloration, the pitting, they got very bad very quick. So I went to see a specialist at the hospital and 3 years ago I was diagnosed with lower limb Lymphedema. To walk and stand is a chore. I strongly believe the FM really makes the Lymphedema worse and vice versa. With the two of them, my legs and feet are in a great deal of pain every single day. I also have started getting severe migraines. I have bulging discs in my neck and back. The FM just seems to intensify the pain and my pain tolerance just isn’t what it used to be.
What (if anything) have you found/ done that has improved your symptoms?
Well first it was a mad rush of medications. Gabapentin is a must. I have tried Lyrica, Cymbalta, and now I am on Effexor. The best thing I did for myself though was to study up on it. Learn what others have done. Keeping a good attitude; it sounds so simple but that really helps. With all that has transpired within the last 8 years, depression definitely became a part of it so just learning to remain positive has gone a long way for me.
How open are you with friends & family about your illness & symptoms?
At first I was afraid to be open about it because very few people know much about it and I was afraid of the judgment. I found that I had to be more open though if anyone was going to understand why I have to do some of the things I do.
Do you blog about your illness? If so, what inspired you to do so?
I haven’t blogged about it but just recently I found a vast amount of people that were on Twitter and I started sharing pictures and some information about my own illnesses and I feel it is something I want to consider doing more of. Just by reading other people’s stories I have found some helpful tips and it has helped me to not feel like I am alone. If my blogging about it can help someone else like it is helping me, then I should consider it more.
What is the best advice you’ve received for fibromyalgia?
The best advice I have received was from a close friend of mine. She told me this one night while on the phone. She said, “Even if you are considered disabled it does not mean that you cannot do anything about it John!”
Also, exercising and changing my diet have been very instrumental in helping me get through all of this. My Lymphedema therapist had told me this, “I know that exercising is the last thing someone who is in pain wants to do, but I don’t want you to go all out. I want you to just do what you feel comfortable with. Knock on pain’s door, but don’t open it.” That saying helps me get up and exercise more often than I had been doing before and it really does help to keep active.
What was the worst advice that you followed?
I can’t really think of anything that was bad advice that I followed. If it didn’t sound right to me, I didn’t try it.
What is your favorite way to cope with your life as a spoonie?
Being a musician I can speak thru an instrument. I can’t really play the drums like I used to, but I have my guitar. Whenever I start feeling overwhelmed, or just frustrated, or even depressed; I pick up my guitar and just let the music do my speaking for me.
What is it that inspires you to keep going, despite your illness?
We only get one chance at this life. Even if I didn’t get dealt the hand I would’ve preferred, it’s still mine and it is what I make of it! My existence on this planet is so minute, but if I can do myself proud, then I think it is well worth it.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned that no matter what is thrown at me, where there’s a will there’s a way to overcome. I find that I am stronger than I even knew, even when I feel at my weakest.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Don’t let others discourage you from finding out what is going on. You know your body better than anybody! Not all Dr’s are well versed with FM, so keep looking for a good Rheumatologist or Dr. that will listen to you! Also, you are NOT alone! There are millions of us that are also going through the very same thing, do your research, find a group of people that have it as well. They will more often than not be your best teachers.
Is there anything else you’d like the readers to know?
Don’t be afraid to share your story with your friends and family! Let them know what is going on. Yes, there will probably always be that one or two people that won’t get it, or don’t believe it because they can’t see it; but by opening up to others they will be supportive if they truly care about you! If they aren’t, then maybe they aren’t as real of a friend as you may have thought? Spread the word, educate the public, and let them know that just because you can’t see it doesn’t mean it isn’t real!
If you’d like to get in touch with John, you can find him on Twitter @JohnnyTribs
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