Fibromyalgia and what it did to me

Dear Bloggers,

I was overthinking the times that Fibromyalgia was just coming into my life and I did have a pretty “normal” life. I was not a superman that did loads of sports I was just an average guy. From the age of 16 I got stiff fingers in the wintertime and I blamed it on the cold weather after a couple of years the stiffness of my fingers became a bit worse. It was not bathering me only working on the keyboard of my computer was hurting after a while. I had a good life and I was just a few years recovered after a nasty fall of the stairs which nearly killed me. After learning a lot of things again with help of my neurologist and a logopedist I could get back to work again. But then the first problems rose due to the costochondritis.



I was fairly active, working out regularly by riding my bicycle and going to the gym. I had just joined a Tae Kwon Do class and I was really enjoying myself. It happened very quickly – my wife was driving, we were heading towards the shop, shooting past the traffic in the other two lanes. Somehow my head could not follow and my hands just swelled up and almost immediately and the pain was atrocious! A trip to the doctor yielded no diagnosis. Still confused we left the doctors office but the pain was not fading. After a fw days I saw the doctor again in a pretty bad condition as also my legs gave up on me and the pain was heavier than before It was februari 2008.

I sometimes wonder if the woman who was the assistant of the rheumatologist ever thinks about the words she so carelessly spoke to me after I finally got out of the chair in the waiting area. "Well, It is hitting you hard as see how you get up and you’re walking like an old man." Does she think about where I might be today? Sure, she was a couple of years younger, and I wander if she was thinking could this happen to me as well in a couple of years. Question is if so did she also end up with chronic pain? Fibromyalgia has many different faces as some of us end up in a wheelchair using loads of medication, others like me have found a way to use step by step less medication and started working parttime in a less stressy job. Eventhough you still have bad days it does not effect your life so much anymore.

My doctor of internal diseases has tried everything. The cortisone shots were the worst. As the pain from my costochondritis was the worst and kept me from working. Six months later, I was still limping along using plenty painkillers and crying myself to sleep almost every night, tried a tense pulsing device which was working quite well in the beginning, still I was taking pain pills every four hours, defying the instructions to take them every eight hours. Finally, my doctor of internal diseases decided that the rheumatologist was the next step. I was 40 years old and preparing for my first long term sick leave, hoping to wipe away the pain and decrease the stress in my body. My job was my life and I could not imagine a life outside of the ship. There was still a lot of pressure on me as accepting this disease is not easy. I was pretty unhappy at the current time.



Getting Better

After three months of intensive and several therapies, I could barely walk for twenty minutes as the fatigue was taking over and I would fall into a deep sleep. I forgot everything even to pick up the kids from school, but the daily pain had been greatly diminished and I COULD walk without any painkillers. I didn't cry myself to sleep at night. A success story, if you asked me. I wasn't willing to settle for a live on the shore as the ship was my life, though. I went to the gym every day and walked on the treadmill – slowly at first and not for very long, but gradually worked my way up to running for five minutes. I felt great.

Still not enough, I was trying hard to get back into shape but during one of my bike rides my body fully gave up on me. Before the event, I had talked to my doctor about getting in motion as much as I could and get to talk to a dietician furthermore I talked to him about my inability to sleep and not feeling refreshed upon waking. He gave me some medication, which didn't seem to work very well. Not being the kind of person to complain about such things, I didn't go back to him about it.

Something Going On

The next weekend I jumped on the bike again together with my daughter but I had trouble to keep up with her and this was new to me. So I tried to catch up and yes I did, and I didn't let the strange fatigue hold me back this time. It had been long enough. I told myself I was just being lazy now. I pushed myself as hard as I could, but now, shin splints forced their way on me, and I would finish one kilometre screaming in pain, only a hot shower on my shins for an hour before the pain subsided. I'd go out again, going a little slower this time. Eventually, I'd give up, feeling like I'd just been to the whipping post. Exhausted and in pain, I'd climb back into the shower, telling myself that tomorrow would be another day.

Eventually, I had to admit to myself that I would not be able to ride a bike for a long journey again, and I set my sights on the half of the journey – eager and ready, mentally, at least. My body still tired easily and my muscles ached terribly after a workout. I pushed because I wasn't going to let the pain stop me.



As soon as I cleared the “finish line”, I squatted down and almost passed out. My muscles were "zinging." I had stopped and couldn't go any further.

An Answer to the Puzzle

The muscle aches and pain started not too long after that. I hadn't made a connection between all of my symptoms, so I hadn't told my doctor about all of them. Lack of refreshing sleep; dizziness, which I attributed low blood pressure; irritable bowel syndrome, something I'd always had; muscle fatigue, flu-like feelings on occasion; poor memory at times; all the symptoms were there. Finally, I read an article about fibromyalgia in a popular health magazine. It immediately clicked – this is what is wrong with me. I went back to my doctor with the article in hand and told him, "I think I have fibromyalgia." I was scared, but relieved when he said, "I think you're right."

He sent me to a rheumatologist, who confirmed the diagnosis in the spring of 2010.

Learning to Live with Fibromyalgia

It's been a long learning experience since my diagnosis. I'm amazed that I can feel perfectly normal one day and completely wasted the next. My wife is just starting to recognize when I feel poorly and what we shouldn't do on those days. Those are the days she generously makes my dinner and doesn't expect me to do more than sit in my chair and read. She used to bully me into saying, I am not complaining when I have pain, not understanding just how bad it was. I love her but hate her for not learning enough about how this affects me to look past how it affects her.

"I've tried all the new anti-inflammatory drugs, to no avail. I've learned that one sleep aid makes me hallucinate while another gives me bad nightmares. Yet another left me so drugged in the morning that it's amazing I was able to get out of bed. After all these trials I was pretty much a drug addict and I made some choices about what would be the best bearable medication. So I started to build things down and act a bit slower with less stress.

The phrase "overdoing it" has taken on a new meaning in my life. Washing the car by myself leaves me exhausted for two days. I can still run when I need to, but I suffer the consequences the rest of the day and into the next day. My days of running and biking trips are on major hold, if not permanently ended. My membership at the gym is frozen, but I've learned that Tai Chi does amazing things. Sometimes I have to convince myself that the pain I'll feel afterward isn't so bad, but it is worth it.



I've learned that my "fibro-fog" is just something I have to accept. If I think about it long enough, the word I'm looking for will come. If I write it down, I don't forget it. My free time is now given to caring for myself, my wife and my two daughters, without their strength and mercy, I would be much worse off.

I know eventually my doctor and I will hit upon the right combination of treatments that will allow me to lead a much more normal life. Until then, I glory in the good days and hunker down on the bad days. I know I'll get through them and only God knows what tomorrow will bring. It's not always good, but it's NEVER always bad. My pain pills are with me wherever I go, but that's not such a bad thing.

I've often wondered when and how I got fibromyalgia. Did the fall of the stairs accident a few years ago cause it? Did it just exacerbate symptoms that were already there? Was it the stress in my job on board? Or was it everything together? I'll never know. I've never slept well, even when I was a lot younger four hours of sleep a day was enough. Personally, I think I always had it and that, for some reason, something made it come to a flare up and it's been with me full force ever since. To me, it doesn't matter. My wife still struggles with that question, though.

I am pretty sure that things could have been worse for example that my brain did not get back to where it was after the fall of the stairs or that fall would have killed me. Or what if .......no, no stop it now. It all turned out pretty well for me.

I am thankfull daily for my wife, for my friends and, believe it or not, for my health. I can walk. I can talk. I can work. I can see. I can feel. I can hear. I can love. What more do I need?

The Old Sailor,

Are you still able to work wit FMS

Dear Bloggers,

For nearly everyone I know with Fibromylagia, it is not the pain, or the fatigue, or even the restless sleep that frustrates them the most, it is the feeling of no longer being productive or able to contribute to a normal society. Also the misunderstanding of the illness by other family members leaves deep emotional scars. How many of us have had to quit our jobs or restructure our lives completely because of this illness? Sorry it is not an illness but a so called syndrome and it is not recogneized by the beneficiary services. It is not a health issue but a mental problem. Most of us I am sure. And for those of you still maintaining your lives and careers, it is through sheer strength and will that you are able to do so.

For myself, Fibromyalgia has forced me into a change. I was working in a passenger ships reception at a high-pressure, fast-paced ferry company when I first was diagnosed in 2009. For months I tried to hang onto the position I had spent several years building within the company, but ultimately I had to let it go. It was not an easy choice to make, but it definitely led to an improvement in my life and allowed me to manage my symptoms without the stress and pressure I faced daily as a receptionist. And yes I loved my stressy job.

I became a bus driver and worked for a temps office, able to set my own schedule, and as long as I met or exceeded my and their goals, I could work as much or as little as I needed. Some weeks I worked full-time, others I put in less than 20 hours. My position required me to drive a lot, but all of my rides were within driving distance so I became a master at routing myself and to take advantage of my "good" days and I had enough breaks to recharge for the next run. The planner knew that he could count on me if he needed someone to fill in.

For several years I was pretty succesful and even thrived in my ships career. At the time it was a very compatible career for me. Then in 2009, as I was sailing to one of my destanies, I was hardly able to get out of my bunk, I waved it away as it was nothing serious and I probably would get the flue. And the comfortable life I had spent the last ten years of building up my carrer was shattered in an instant. Even though I had been living with Fibromyalgia for ten years, I had no idea how relatively manageable my symptoms had been. Sure I had some bad days and debilitating flares, but this was only in the winter season. But nothing like I began experiencing after this bloody morning.

So once again I was faced with a decision. I knew I could no longer manage my sailing territory and my health. I could have pursued the opportunity to go on disability, but I was afraid if I allowed myself to be labeled "disabled" I would start to believe that I no longer had anything to contribute. When I ended up at the UWV office they straight away told me that there are no benefits for this syndrome called FMS. This was puzzling me as the Danish government declared me not able to work a full time job and I was also entitled to a disability pension. It made me angry and confused as I was sitting in between two different opinions. And I made the choice to work as a bus driver but in my own speed. Please do not get me wrong I honor and respect those of you who have and need the security of disability, it was simply my personal decision to eliminate that as one of my choices. So what to do then?

For the first time in my life, I decided to follow my passion for driving. I didn't just wake up one day and decide though. It came about out of the natural progression of me trying to manage and improve my health. Things were pretty dark immediately after my job loss. As the weeks and months past, I continued to feel worse, not better. My despair led me to go and do the driving course and exams needed to become a bus driver and to get my license of course. I started driving for the summer period, and this continued until the 31^st of December last year.Unfortunate the contract was finished. 

Thinking about my health and wellbeing, and then a weird thing happened - my life began to come back into focus again. I felt like I had a voice and a purpose again. And then slowly, I started for an other region in the same  company again. Maybe this was not the best choice that I have made. As all other temps I am just another number where no one is happy and among the ones with a steady job sickness is up to more then 10%. I would call it a low social people management close to modern slavery. 

It is by far my least lucrative career, but that doesn't even matter to me. I am healing through my driving, I am reaching out to all of you that there is always something that you still can do, and I am doing something I am passionate about. So do I thank Fibromyalgia for bringing me to this spot in my life. I don't think I will, even though I believe everything happens for a reason, and that I am exactly where I am meant to be, I also think my path was a little too painful for me to be grateful. Maybe I will just be grateful that I made it through.

So this is my story, but I am really curious to learn about all of you. Are you able to work while managing your Fibromyalgia symptoms? Do you simply push through it, or have you made adjustments to allow for the unpredictable nature of Fibromyalgia? Have you had a career change? Are you on disability? And if you are on disability are you still able to earn a supplemental income? Any thoughts you have on working with Fibromyalgia, I would really appreciate if you shared them in the comments. As you might have guessed I am planning to find another place to work again, all in quest for better health and wellbeing. 

The Old Sailor,