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Fibro in the Winter

Posted by ARadioGurl on February 1, 2017
Posted in: Daily Life, FMS. Tagged: , , , . Leave a Comment

When I was a child the transition of seasons from summer through fall into winter brought with it a slew of sinus issues and a nasty cough. As I aged, fall and winter became worse for me. After high school I ended up in Florida for my undergraduate studies at a tech university. I and my body were happy to be away from the cold of New England. I had no clue why I sick less often and why my allergies and sinuses bothered me less now that I was in Florida, back then I did not care.

Seven or eight years ago I noticed the Florida falls and winters were getting harder on. By late fall I would suffer sinus infections that I blamed on working at a University or roommates. The reality is that my body was becoming weak, combinations of vitamin D deficiency and B12 anemia were making the fibro worse (or maybe the fibro was progressing making the deficiencies and anemia worse). Part of my diet was a B complex supplement that ended up masking the anemia from my blood tests.

Four years ago I would find myself shaking with a chill in a 71f room. I was still undiagnosed and the doctors were passing me from one specialist to another. I needed a space heater in my office due to the AC keeping the room 75f, which would trigger chills. I remember driving home from work on many occasions, heat on full blast at the highest setting, even when it was 80f outside.

Two and one half years ago I was diagnosed with a vitamin D deficiency and started treatment, I had hoped that would solve my temperature sensitivity. The worst of my pain lessened but I still had regular chills and of course the fatigue attacks.

Less than one year ago I was diagnosed with Vitamin B12 anemia and started treatment. Suddenly I was warmer than I had been in years. I no longer needed to set my AC at 78f-81f, but could keep it at 76f. I stopped getting chills at work and the fatigue attacks lessened. Along with cardio and stretches I felt like I was getting stronger for the first time in years, maybe winter would be easier to handle.

This is my first winter with all my deficiencies treated, I even traveled to New England in December. Winter is still hard on me, especially the cold weather. When the weather drops below 50f the fibro is prone to flaring. I feel stiffness in my joints, my muscles are sluggish and heavy, the chronic pain increases by a factor or two, and my sinuses act up. When I was up in New England I was miserable. The fibro was much worse up there, it made me slow and I felt sickly like when I was younger. While the New England trip reminded me of my health limitations, I was happy I made it there and was able to enjoy some of the trip.

These issues slow me down, but they are not nearly as intense as they were a few years ago. I am happy that I can sit in a 70f room and not suffer a chill. I am happy I don’t have to bundle up to go outside in 60f weather. I look forward to the weather warming back up, it is hard to exercise with muscles sluggish like this, and my hand pain always worsens, making work pain. I am not happy that the fibro flares in the cold, but as long as it only slows me down I will survive.

Fibro or Sinus Infection?

Posted by ARadioGurl on October 5, 2015
Posted in: Daily Life, FMS. Tagged: , . Leave a Comment

I originally wrote this in early September, but seems appropriate as these issues have continued to re-occur throughout the month.

Early September:

The fibro pain has decreased a lot over the past few weeks. The intense pain episodes have become less and less common, but I still get sick. When the storms, remnants of a hurricane that fizzles, came through here, my sinuses went haywire. This isn’t that unusual and will usually alleviate itself within a couple of days, unless it becomes a sinus infection. Tuesday I went out for my morning power walk, got rained on a few times, came back and put in a full day of work.

I felt decent that day, but my sinuses were clogged and not recovering. I woke up Wednesday with a sinus headache and clogged sinuses, so I worked from home. That afternoon I had what I thought was a fibro fever, low grade, but none of the usual pain, mostly fatigue. I assumed it was the fibro, and why not? Fibro symptoms love to change, randomly, without warning.

Two days later I’m still fighting a fever that hovers around 100.0f, my fibro fevers rarely go above 99.8f. My sinuses are barely starting to recover, but they are. I’m not the only one, friends and one of my doctor’s have been having allergy or sinus problems this week. Probably something in the air, the pollen count has been higher lately.

I have been experiencing sinus infections like this for at least twenty years. Sometimes I will go months, but they always return. One year I had reoccurring sinus infections most of November and December. I discovered that Oil of Oregano in between meals administered orally helped me recover, and tea tree oil in my humidifier would help my sinuses clear up a little. Fibro flareups remind me a lot of sinus infections, except they usually don’t affect my sinuses. Since my sinus issues are usually allergy related, I always blame this on the fibro. Maybe some day I’ll learn the difference for good.

I still believe that I will overcome this. I continue to exercise and work to keep my diet healthy. My energy levels have improved significantly, fatigue is not nearly as bad as it was six months ago, and I’m getting strong. A healthy lifestyle may not cure my fibro, but it’s the best chance I have at managing it.

Fibro Fevers

Posted by ARadioGurl on May 16, 2015
Posted in: Daily Life, FMS, History. Tagged: , , . Leave a Comment

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.

Capabilities or Lack Thereof

Posted by ARadioGurl on May 13, 2015
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

 

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.

Post 1 – A quick update

Posted by ARadioGurl on May 10, 2015
Posted in: About, FMS, History. Tagged: , , . Leave a Comment

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.