I was recently asked to do an interview with “I Told You I Was Sick” .
As all interviews go, some things just don’t make it into the article. So with the list of twelve questions I was asked, I thought I would post the UN-Edited straight RAW interview here.
I hope this will help many of you. I know in writing it out, it has definitely helped me. So here we go…
- When did you first realize there was something different about your health as compared to others your age?
At age 33, in 2010. Traveling as a salesman coast to coast for 7 years, I noticed I could not stay a focused on sales and was tiring more and more easily working 7 days per week, 6 – 14 hour days. So I decided to get off the road and work less but just in my local area. This was a mistake, and I ended up on my couch for 6 months just totally exhausted all the time. Upon seeing my Naturopath (not being a big believer in western medicine) she tested my adrenals, and at that time diagnosed me with Adrenal Fatigue.
In late 2012, I started a part time “Temp Job” that in Jan 2013 became a full time salaried position. GREAT! I thought, I am getting back on my feet! Until after having 2 friends pass, a personal move, and a lot of stress, I was approached by the owner who was not happy with my performance. At this time I was in near constant pain, finding it harder and harder to focus, and in August of 2013 I was to a quit or be fired position. As I said, I could not concentrate, was in near constant pain, and my emotions were all over the place.
Being an overachiever, a Marine, and in my opinion in great shape, Here I am 36 years old, and can’t even keep a JOB! What the hell is wrong with me? I took a break and recovered from travel, we got my adrenals under control… Needless to say I was lost, scared and confused. What did I do wrong?
- How long did it take you to get a valid diagnosis of fibromyalgia?So the short answer, 3-4 Years… Here is the road it took.Well as I said above, in 2010/11, I was diagnosed with Adrenal Fatigue. But as you can see, obviously something else was going on, so in late 2011, I finally broke down and went to the VA for medical treatment. (I had not previously as I believed it was for combat vets only, and being a non-combat vet I had not gone to the VA. I was wrong The VA is for ALL who served). I started the rollercoaster of Doctors. The first said to my face, I was too young to be in so much pain, there is nothing wrong with you… She also said that Chronic Fatigue Syndrome (Which I had been diagnosed with while on active duty), and adrenal fatigue were just Doctors labels for lazy people.You can believe that this was crushing. I had done much research on my own health, had been an EMT, so I knew enough to at least get a better idea of what was happening to me. And to be told I was just lazy and it was all in my head… WOW. In truth, part of me wanted to believe this was true, that I could just pull on my boots, Marine up, and I would be well again. The other part of me that knew better fought with the VA to get a new Doctor.
The second Doctor I had lasted two visits and he quit… BUT he did send me to a rheumatologist as he said I might have Rheumatoid Arthritis or a slight possibility of Fibromyalgia… but that’s mostly a woman’s disease. He did get me started on Tramadol for my constant pain, which is low dose morphine.
Upon having MRI’s X-ray’s, tests… ETC the Rheumatologist said I had Osteo Arthritis from service injuries, and she thought I had Fibromyalgia but it was for my Primary Doctor to diagnose.
So on my second visit to this Doctor; he said yes it looked like I have Fibromyalgia, but that it was up to the rheumatologist to diagnose. (GRR)
However, he thankfully sent me to the Pain Management Clinic to see if they could help me get my pain under control.
In early 2014, the Pain Management Clinic finally got me in to see one of their Doctors. I explained to her the above situation… She read all the reports and said YES you have Fibromyalgia and they should have been treating you for it a year ago!
- What are some of the greatest misconceptions surrounding men with fibromyalgia?
The Greatest Misconception Surrounding Men With Fibromyalgia:
“But That Is A WOMAN’S Disease”
I hear it from other men all the time, from doctors, and from women with Fibromyalgia who believe “Men are just stealing their disease” – YES I have had that said to me by a lady with Fibromyalgia!
3A. Do people think you’re:
- Addicted to Drugs?
- Mentally Ill?
YES, to all of the above. I know personally in losing my employment and employability, from being seen as weak and a “drug seeker” as well as being asked if I had a mental illness, that this is indeed a concern for many with fibromyalgia. I have even been asked by my current employer “Isn’t fibromyalgia a woman’s disease? It hurts when I hear that, or like when above in question one, the doctor even tells me it is all in my head.
However in talking with other men who have Fibromyalgia, and I know from my own viewpoint, the greatest enemy we have, is ourselves. Feeling inadequate, weak, unable to provide for our families, hold a job, keep active, and “Be a Man”. Being men, to avoid some of these feelings, we will push ourselves until we can go no farther.
According to the CDC in 2014 – 1 in 8 people with Fibromyalgia are Men. I believe this is inaccurate as many men will not seek treatment (like myself) until they have no other options. Women, as a whole, tend to be more, health conscious, or aware.
- Mental fatigue can make a person with fibromyalgia present as though they are drunk or mentally challenged. Has this happened to you? If so, how have you dealt with it?
Yes, mental fatigue or brain fog is a huge issue. IE: in answering these questions to this point has taken me 1.5 weeks! However part of that is out of choosing the level of importance of any mundane task. Cook dinner and try to do some house work, or sit down and think? By no means am I saying these questions, and sharing of information is not important. Just the opposite! IT IS VITAL! One must always find a balance in what we can do, and what we can’t.
So how do I deal with my mental fog? Sometime just basic breathing and re-focusing exercises help. Some days it is music, either in the background or blasting to short circuit my brain into re-setting itself. Yoga I have found really helps with the pain, and that in turn can help with the mental fog.
HOWEVER, there also days when I just take a “Poor Me” day and veg out on the couch watching Netflix, as I can’t even figure out how to make a pot of coffee. What I have learned living with chronic pain and Fibromyalgia, sometimes it is okay just to say no, and REST. Sometimes you get up, drink some coffee, shower, put on clean jammies & go back to bed.
- What makes being a man with fibromyalgia more challenging than being a woman with fibromyalgia?Stigma & Acceptance.I know a one line answer bites… I think men do indeed suffer more from the physical and mental sides of Fibromyalgia due to, Feeling inadequate, weak, unable to provide for our families, hold a job, keep active, and “Be a Man”.
Also for the fact that many of us wait so long to seek treatment, that by the time we finally get diagnosed, we have allowed fibromyalgia to do more damage to us, than most women would. That and there are many studies that women have a higher pain tolerance than men. I do not know if this is true or not, but as most men with Fibromyalgia will attest to, the pain is constant and most wearing.
- Fibromyalgia can cause depression and anxiety. Do you struggle with these? If so, what do you do to keep your mental health balanced?I do not know if Fibromyalgia can cause depression and anxiety, however I do believe that the pain, the brain fog, and other symptoms of Fibromyalgia do cause depression and anxiety. I like to say I am not in pain because I am depressed; I am depressed because I am in pain!In many ways the mental aspects of Fibromyalgia, can be the biggest part of treatment that many men & women tend to neglect. “If I can go to work I am ok” or “I don’t talk about it, because I don’t want another Label” Again the stigma of depression, keeps many people with Fibromyalgia from discussing it. As sad as it was to loose Robin Williams, his suicide brought many mental health issues however briefly to the forefront, making it easier to discuss depression and mental health.Through the VA pain management clinic, I was able to take an 8 week course, dealing with the mental & emotional suffering involved with chronic pain and illnesses.
To answer the question how do I deal with it… well there would be just to much to write here, as it was an 8 week class. But let me attempt to briefly sum up what I learned.
The pain of Fibromyalgia does not go away. It is like the neighborhood smelly bum. Always there, always wanting something. So you have three choices.
- Try to ignore him, and hope he goes away leaving you alone.
— Does this ever really work? —
- Fight with him trying to get him to go away
— Might work for a short time, but he always comes back –
- Accept that he is here, and live as best you can with him in your life.
— Basically, learn to live with Fibromyalgia. A new way of living, accepting that there are new limitations to what you can and cannot do. —
Let me put this another way. As a man let’s say you LOVE camping, but due to Fibromyalgia you feel that you “cant” do it because of your pain. So when friends ask if you want to go, you say – “I would love to, BUT I am in pain”. This statement can lock us into a continuing spiral of isolation, which can increase our feelings of depression and anxiety.
However, if you stay home in pain, will you be in more or less pain than if you went camping? Yes you may not get up to play football but if you decided to go, even doing less activities would it be worse, or the same? So try this…
A Friend comes by and invites you to go camping, you reply by saying. “I would love to, AND I am in pain”
Notice instead of saying “but I am in pain”, we said “and”. This says yes you can go, it tells your friend that you value the time and activities with them; you just will be doing less.
With all that said above, I have had two emotional meltdowns in writing this. I have fought over what to say and how to say it. In reading, and re-writing these answers, I have myself spun into that depressive, Oh My God, how did I get here, and what happened to my LIFE! Spiral… I am not perfect, nor do I want anyone to think that. Just this week I was back at the VA in the Physiologists office getting a “Tune Up” from the above class, as I have been extremely overwhelmed as of late and was not using the tools I had been taught, and given.
In a few months, I will be re-taking this class, and my personal goal to put it into a video form that will help others who do not have access to such help otherwise.
- How do you balance your illness with your personal and professional life? Do you prioritize with lists? Take it day by day?My professional life is an 8 – 10 hour work week, helping a Home Business Owner, I wish I could say it was more but I am barely managing to keep up with this.I should, and do better in my day to day activities (dinner, basic chores, etc.) when I do a daily list. But let’s face it, who is great at making lists? I know I am not, even thou I know it helps me. So I tend to take it from day to day.
With my current JOB, I am blessed that they are mostly flexible with my schedule, and when I can’t make it in due to high pain, or just pure exhaustion and brain fog, they have been understanding with me, and my illness.
However even being such a short work week, I know on days when I work (2-4 hrs. per day), by the time I get home I need a 2-4 hour nap to recover. I used to call this a Crash, as that’s what it felt like. I could not keep my eyes open, or focus on anything. However going back to the class we discussed in the last question, the words we use can be trapping. By admitting I need to take the time to recover, and not calling it a crash, helps me accept some of my new limitations.
- How does the weather affect your condition?
It is currently Monsoon season here in Arizona. Pressure builds and falls. Pain rises and falls accordingly. I know there are many Doctors who say that people who can feel the rain or a storm coming are nuts. But I can. I know many men and women who have chronic pain for any reason including Fibromyalgia, agree this is true and feel it themselves.
With the constant yo-yo of weather, and pressure, this is my least happy season. The up down of my pain levels really is physically, mentally, as well as emotionally draining.
- How are you treating your condition? (Medications, supplements, diet, meditation, etc.)Yoga & Physical Pool Therapy have helped, along with limiting sugars and grains. For many reasons my Wife and I have chosen a “Whole Food, or paleo” diet and lifestyle. I have found when I eat too much grains or sugar, my pain is always higher.As for medications, I am currently on a bit of a change. But from anti-inflammatory’s (Motrin, Naproxen, etc.), to Muscle relaxers, daily. Along with Amitriptyline for the last 2 years, but recently changed for Cymbalta. Of course Tramadol for breakthrough pain, so near daily use there as well. Especially during Monsoon season.Now for the topical treatments, Tiger Balm, Frankincense & Myhr Neuropathy oil, and prescription strength Lidocaine ointment. Also heating pads and ice packs, depending on which type of pain, and which hurts less to use at the time.
Also let me address alcohol. Yes I drink, yes in moderation. There are times, even with Tramadol, that I just hurt and it will not go away. In many Fibro men groups, there have been discussions of pain management. For many, medications only with alcohol ease the pain enough where they feel like they can function.
For me, I have tried this, and have found that only one alcohol seem to help without having to drink in excess. That is Kracken Rum. Usually one to two shots per day, in a mixed drink if needed, do indeed help with the pain. NOW With that said, being on the medications I am, I should not be drinking at all, however it is a choice I make, to be in less pain and thereby be able to get more enjoyment out of life.
- Your website is a haven for “Men With Fibromyalgia”. What prompted you to create it?
Now that is a story! LOL (Sorry bit of ego popping thru). In truth when I was starting my disability claim, it was strongly suggested that I have a daily pain journal. Well I don’t enjoy writing, and video is just so easy!
So I had a thought, of starting a You Tube channel just for my daily pain journal. However when I mentioned this to some of the groups I belong to on Facebook, such as “For Fibro Men” and others, the idea grew, and many said it should be a man’s Journey Thru Fibromyalgia.
The site itself is still a work in progress, as with a new job, and some personal setbacks, we have not progressed as quickly as I would have liked. However we are growing, and the goal is to let Men, Women, and loved ones of Fibromyalgia sufferers know that they are Not Alone!
- What advice would you give to someone who is romantically involved with a man with fibromyalgia?Being blessed with a wife who has thyroid issues, and chronic fatigue, also a friend with Fibromyalgia (See SpoonGeeks on Facebook and You Tube), I can only share from my experience, and that of men in various Facebook groups who have shared their relationship stories.The biggest advice I can give is so cliché it hurts. But it is the truth none the less. “Don’t Take It Personal”. Seriously when we cancel at the last minute, or would rather stay in, please don’t take it personal. We hurt, and being around a group of people may trigger more pain and/or exhaustion.
The second most important is unto the first: Communication! Ask us what we are up to doing; don’t let us roll into a shell of pain and non-communication. ASK us, and don’t tell us we are just lazy. Be willing to be gentle, as there are times even snuggling hurts us.
Let me take a moment and share with you my wife’s perspective.
“If you’re living with someone, it’s good to have daily touch base conversations of ‘what’s on the schedule for today’. As Norman said, he is not always good at making a list, and this helps him identify some of the top things he need to get done for the day, and remind him of things he may have forgotten.”
In doing this, it makes the relationship a partnership and also helps keep each other accountable. Reminders during the day help to keep me on track, but keep it helpful and encouraging, not in a ‘nagging’ tone. Also, when you share the household duties, it’s good to be sure you talk about what needs to be done and make a game plan together.
Maybe you’re responsible for laundry but it takes too much energy or strength to lift the basket or hold your arms up to fold the clothes – ask for help and/or make it something you do together while watching TV in the evening. I know that having two of us living with chronic illnesses living together can be frustrating as one has to pitch in more sometimes when the other is having elevated pain or fatigue, but things get worse when we don’t talk about it and work out a game plan together.
For the last I talk about the Sex life. Yes I said the three letter word that many do not openly discuss. I Love my wife and our intimate times together. However to be honest my stamina has tanked, and rarely does my pain stay away long enough for either of us to reach the climax. Usually after any intimacy, I have to take one to two days for my energy and/or pain to recover back to “normal” or manageable levels.
- What words of encouragement do you have for your brothers out there who are living with fibromyalgia?YOU ARE NOT ALONE! There are many Facebook groups that are out there, as well as local face to face support groups, specifically for men. If you just think you have Fibromyalgia, but have not talked to your Doctor, GO NOW. Do not wait like many of us have until the total crash! Find help, be it in a Doctor, Facebook group, or with family. Be open about your condition, don’t hide from life, and be open to learning your new limitations, but also how you can enjoy life with these limitations.
Yes, your life is now forever changed, and until a cure is found the best we can do is learn to manage the symptoms as best as we can. Again let me say that you are not alone! Share your story with others, and help raise awareness of this disease for men and women alike!
Part time contributor to SpookGeeks.com
and their Facebook / You Tube pages.
Again with Thank’s to the team at “I Told You I Was Sick” for the interview!