History

My history

There is a lot of research linking fibromyalgia to excessive stress, and I believe it is one of many possible factors. My fibro peaked when I became heavily traumatized a few years ago, but it started long before that.

— Please excuse grammar mistakes, this was originally typed on a mobile phone and hastily edited before bed.

 

Both of my parents were abusive narcissists, they thought they were doing the right thing, what they needed to raise a strong child. Mom was the physical abuser, dad used mental abuse. Both got worse when they drank, occasionally starting verbal fights with each other. Both of them were strict, Roman Catholic, but not very religious, ex-military, and strength was very important to them. I was weak, often sick, and definitely not like the other children. They ridiculed me for that, almost nightly. We lived in a very liberal, open minded and accepting neighborhood, but I had to live heavily closeted, scared, and be someone I was not. My only hopes in life were to make my parents happy. My greatest fear was losing them, so I did everything possible to keep them happy.

I didn’t have allergies until I was eight or nine, they were triggered by renovation work my parents were doing. My parents didn’t have me wear a mask and I ended up inhaling renovation dust. That dust was one hundred year old victorian house plaster and dust, mixed with various animal hairs, mostly horse. Every couple of years a new symptom would show, usually around times of high stress. It wasn’t long after my allergies started to show  that time they had me start helping them with the family businesses. Weekends and summers were mostly spent cleaning apartments, moldy basements, attics, or yard work for the dozen or more properties we owned in our neighborhood. My parents would buy one or two home a year, and I worked on all of them. I never did a good enough job for them, a constant disappointment. Too often I would be sick the next day, suffering from allergy attacks or sinus issues. Some times they would just be too frustrated with how ‘slow’ I was. I would tell myself that would change after I became a successful engineer.

My asthma started when I was a senior in high school. I had an unfortunate incident with a jacuzzi in an unventilated room that left my lungs scarred. At first my parents didn’t believe me, they assumed it was a yearly wheeze that I had. So they sent me off to school. I pushed through the day even attempting gym class while wheezing for breath. After school was over I was driving and my car broke down, just down the hill from home. It was the longest walk I had ever done at that point, stopping every few feat to catch my breath. My parents still didn’t believe something was wrong and left me with two neighbor children to babysit. By the time my parents returned home I was in bed barely able to breath, the children half freaking out. My parents finally believed me when they had to half carry me down three flights of stairs.

 

Eventually I went off to college and learned what it was to be a teen and have fun. Fun is dangerous to have, it makes you crave more of it. During my college years I noticed I had a nervous stomach, cast iron unless I was anxious or nervous, useless most mornings. I also started having sleep issues. I would tell myself that was all part of being an adult. My final year of college I started having pains in my wrists, I assumed it was due to poor ergonomics, so I changed my posture, it helped. After college I started working a high stress, low pay, IT job. Some fun once or twice a week helped make it all worth while. I loved to throw a party, I enjoyed a concert every month or two, downtown with friends or coworkers on a Friday. While I was enjoying life, my relationship with my parents continued to disintegrate, and so was my health. As I approached my mid twenties pain continued to worsen in my wrists. My stomach issues started after a high stress month at work, the brain fog began within a year or two of that.

In my mid twenties I started trying to get healthy. I wasn’t sleeping, I was having trouble focusing, there was the increasing wrist pain, and brain fog was starting to become problematic. Doctors told me to exercise more, lose some weight. I really started to love the gym, going three to four times per week with coworkers. I loved that 20-30 minutes of cardio with the headphones in. I would zone out, it was meditation. Another 15-20 minutes of weights, then cool down. I would bike upwards of ten miles, inline skate all day long. I was designing and building new gardens, and learning autobody work. It was great up until the carpal tunnel pain became severe. This time nothing I did helped it improve.

This was my first full fibro attack, although I didn’t know it at the time. I was trying to keep my parents in my life along with being highly active with dozens of hobbies and interests, it was too much stress. At this point I was very successful. My job was a good career, I owned a beautiful house with gardens I loved, one nice car, two vintage cars, and a project in the garage. I had great friends and a recently completed Masters of Science. I was trying to communicate with my parents, yet they refused to listen. I honestly believe they went crazy around this time. They accused me of stealing money from them, lying about my carpal tunnel. This wasn’t what my parents wanted my life to be, they didn’t approve of my life, and within a year they disowned me.

Even disowned and depressed, I was still doing well that year. I was living my life and overall happy. The fibro pain was fading and by mid year I was almost myself again. I had a month a feeling fine (minor aches, nothing disrupting), when my mom sends me my childhood possessions, in pieces. Seeing the broken photo frames, damaged trophies, my childhood smashed, triggered the worst fibro attack. Bodywide pain, fatigue that had me stuck to the ground, and anxiety unlike any I ever experienced.

Within a year I had left my career of nine years, it had turned hostile when I asked for help during my recovery. It was only one person, but no amount they offered me would make me stay, it was time to move on. Packed most of my belongings into storage, then moved to tiny South Florida garden apartment, starting a new leg of my career. The anxiety I felt during the move, while trying to settle, and when attempting to maintain a life nearly crippled me. Three things kept me going, my new job, my boyfriend, and the plan to get better.

My new job is a dream engineering job for an internet company similar to Google. They expect me to get my job done, not be there certain hours. This allows me to work around the fibro and anxiety. I have a great manager who respects my efforts and a company that compensates me fairly. I’m a dedicated worker, and if it wasn’t for the fibro, I would be a much harder worker.

At this point it has been three years since I didn’t have daily pain. Fatigue was a daily problem until early this summer when I finally beat it. I only suffer fatigue if I push myself too hard or on bad fibro days. Anxiety has been nearly constant since I moved, South Florida is a cramped, high stress region, but slowly gaining control. I’m fighting to get better, to get stronger, and eventually move somewhere where I will have myself a home again and be at peace.

I get fibro fevers a lot, usually weekly. When I’m active, exercising, and eating health, they’re much easier to manage. I caught my boyfriend’s cold last week, I recovered from it Thursday, here it is Saturday and I have a 100.1f fever. I don’t always notice them, I’ll be at the doctor’s for a checkup and the nurse will say “Did you know you have a fever?”. That fever is always low grade, usually upper 99fs, rarely above 100. Today is a bad one, not sure what triggered it, but it reminded me of when I would get sick growing up.

My parents and I bought my first modern computer in 1997, the year prior relatives gave me an old Mac Plus and I was hooked. I figured that even if I was sick, I could still work on the computer and I tried. My pattern of illness was almost predictable, major sickness at least once a season, and sick during every major school vacation. I’ve gotten sick during many major vacations and trips, sick in the Bahamas more than once, sick in Ireland and Holland, had to push myself to keep on going during a trip to South Africa, and most recently had an intense IBS attack and vasovagal episode during my first night in Orlando for a InfoSec conference. Sickness during the holidays are the ones I remember the clearest.

Sick during Christmas isn’t much fun. You have to force yourself out of bed ignoring the aches and stiffness, wrap yourself up in robes and blankets while struggling to stay warm, and pretend to be well enough that no one else notices. I would sit in front of the computer, open a computer game, try to work on a project, minutes at best, but it would end up exhausting myself and I would have to rest. It was no different during college and no different as a young adult. I hated that sick feeling, quickly putting those memories out of my mind as soon as I was better.

When I have these fibro fevers I feel the same way, I’ve made this connection before on many occasions, but I keep on putting it out of my mind. This makes me wonder if I’ve always had fibro. Either the fibro or the fever makes the joints and muscles ache, often times the muscles feel like they’re burning, and I have more of those electrical like shocks. Being idle makes it worse, it’s why constant exercise is so important.

I’m still not sure if there’s a link between the fibro fevers and caffeine, but I did have a thai iced tea yesterday, first caffeinated beverage in almost a week. The caffeine may have been too much as I crashed last night, then had intense fatigue late this morning. I’m going to keep an eye on my temperature over the next week or three, I’m avoiding caffeine for many reasons and hope it reduces the number of fevers.

 

I used to consider myself a highly capable individual. I maintained a high stress, high demand, job and completed a masters degree within a few years. That was before the fibro got strong.

Brain fog and sleep issues had plagued me for since before I started working on the degree. Caffeine, exercise, healthy diet, and mediation helped me manage the brain fog and allowed me to function regardless of how little sleep I had. While working on the degree everything got worse and I blamed it on the late nights and weekends. Once I graduated I would get caught up on sleep and start feeling better. After graduation I started getting more sleep everything did improve, I was able to cut back on the caffeine and enjoy myself.

I had a little over a year between when I finished my masters and when I developed severe carpal tunnel and guyon’s canal syndrome in both wrists. I lived in front of the computer during the work week. During lunch I would exercise at the gym and in the evenings I would work on a podcast, websites, software development, and electronics projects. On the weekends I would work in my gardens or on my cars, and also on my computer. My wrists have always gotten sore after long periods of time in front of the computer, noticed it when I first got a computer in high school. I would always fix my ergonomics and improve it for a while, but it continued to get worse over the years. That year, within a span of a month, the pain went from a 2 or 3 out of 10, to a 9 out of 10.

By the end of April 2011 the pain was so intense that I could only sleep two or three hours a night, at best four. During that time I was diagnosed as having two pinched nerves in each wrist, and within a month surgery was scheduled for the end of June. The pain was so terrible that neither otc analgesics or prescription pain killers helped. I had no appetite and even a small meal would leave my stomach upset. I ended up losing thirty pounds over three months.

After surgery I assumed the pain would go away, it lessened. After six months I returned to the doctor’s office to find out why, they told me it looked like spinal stenosis. Next it was off to a back doctor, but with over a month wait I tried chiropractic. Each morning I would wake up feeling a 2 or 3, by the end of the day the pain would be a 7 or 8, sometimes higher. More than once I laid in bed, writhing and screaming out from the pain. Chiropractic helped to relieve the pain and discovered that I have scoliosis. Thanks to the chiropractor I was able to function a little outside of work, I could once again roller blade and do basic housework.

After a couple months and a couple visit to the back doctor, all they could find was the scoliosis. Ended up going through a handful of other tests and saw a pain management specialist, all they could do was prescribe me gabapentin. Gabapentin helped, but the dose I was on was too high and I had bad mental reactions to it. After that I only used the gabapentin when the pain would flare up. At best I felt limited, unable to enjoy my hobbies, forced to rest and recover. During that time my body deteriorated.

Fast forward a few years and I am still limited. December 2013 I weaned myself off my ADHD medication and over the following six months I put on nearly forty pounds. Summer 2014 I started swimming, it was not easy, but I slowly improved. By October it was too cold to swim and I stopped progressing. For most of November 2014 through April 2015 I walked to and from work, 1.5 miles each way. When I started I struggled, I had to stop for breaks and would arrive in pain, soaked in sweat. After a couple of months I was able to pick up the pace and started power walking. Now it is too hot out to walk to work, thus I have started swimming again and I was even able to jog short distances.

Jogging may be an accomplishment, but it was something the before the fibro became strong I never had issues with. If I was still living in my house I would be struggling with the house and yard work. I want to start freelance programming again, which I did before I started my master’s, but too much time on the computer at night means struggling at work the next day. I’m lucky I can maintain a full time job, even if just only. Six weeks of PTO a year and I will use almost all of it as sick time. I always thought that I could do anything I put my mind to, now I can only do what my body allows me to.

I won’t stop exercising, it’s helped me beat the fatigue and I believe it will continue to help my overall health. I barely capable, but I survive, and I may never be as capable as I was before, but that won’t stop me from trying to get back to that state.

A quick who, what, and why.

Who?

I am a Software Engineer working in the Information Assurance/Security field. Currently I work for a major internet company in their security division. My life has taken me part way around the world, I’ve experienced things most people have only dreamed of, and I have dreams, goals I wish to achieve beyond software.

What?

My goal with this blog is to keep a day-to-day record of thoughts, ideas, feelings, and health issues.

Why?

I have fibromyalgia (FM or FMS), possibly since childhood, definitely since carpal tunnel. Late March 2011 I developed pinched nerves in my carpal tunnel and guyon’s canal of both wrists. I could barely sleep, more than a few hours in front of the computer would leave me in tears, driving was painful, and I could no longer keep up with my job or housework. The lack of sleep fatigued my body, deep aches developed, and I could barely eat. This lasted for a few months until I had carpal tunnel surgery, which would release the pinched nerves. After surgery I started to heal and felt like I was recovering, but at one point the pain leveled off and never went away.

I’m lucky, I am capable of getting this site setup. I’m very lucky as I am also able to maintain a full time job, friends, a relationship, and hobbies, even if just barely. There was a time where I felt like I was capable of anything, now I feel like I’m barely capable of anything. Fibromyalgia is not well understood and often dismissed with a ‘get more exercise’ and ‘eat healthier’, but I used to be a healthy and active person. I will get it under control.