fibrolimits

All posts tagged fibrolimits

Originally written back in November 2017, then never posted due to me getting sick.

 

As a Florida resident I have to keep an eye on potential hurricanes. Tropical storms have never been an issue, unless I need to drive through flooded roads, but hurricanes I don’t mess with. In the twenty years I’ve been in Florida I’ve seen quite a few cat 1, 2, and 3 hurricanes. I’ve had giant old trees fall yards from the house I was staying in, and see roofs ripped off buildings where I have worked. Hurricanes are stressful and post cleanup can be exhaustive, not a good combo when one has Fibromyalgia. While my thirty years old home is in a good location, on a good grid and my street has never flooded, none of that helped during Irma.

Hurricane Irma came through and it was not as severe as it was expected to be, but the local utilities haven’t been maintaining their lines. Before I moved to South Florida the utility lines were always kept clear, after moving back I discovered massive overgrowth across the entire grid. Two months ago I had the power company out to see about doing line clearings, it was scheduled for the end of September, but because of the hurricane they still haven’t done the clearing. Luckily during Irma the overgrowth didn’t damage the lines around my house, but did damage the lines further back in the grid. The power line damage from overgrowth caused us to be without power from before the hurricane hit us through the entire week.

The house itself took no damage during Irma, front yard looked untouched, yet the backyard looked like a tornado went through it. Trees and bushes in the backyard were all pushed westward, branches twisted around branches. My orchid tree took the most damage from the wind, it looks like half a tree now that all the leaves and branches are on one side of it. My lemon tree took almost no damage, although we lost most of the lemons. Most homes in the neighborhood had little to no damage, but there was plenty of yard cleanup.

First day after the hurricane was bearable. Without electricity we had no AC, but the weather had not warmed back up. It was fairly easy to start on limited cleanup and it seemed like I was going to be in good shape. On the second day the Florida summer heat returned, along with mosquitos. We had a tiny generator to keep our fridge running and a fan on us, even still the late afternoon left us overheated and exhausted. Thankfully I kept my Quell unit charged, so while the fatigue grew, the pain was kept managed.

The hurricane hit us on a Sunday night, power was restored to us Friday afternoon. I was struggling to function at this point, having slept only a few hours each night. When power came on, and stayed on, that gave me an adrenaline rush that allowed me put the well system back online, but not much more than that. Over the next few days I struggled to sleep, then struggled to stay awake. I managed to take the plywood off the windows, one window a day.

After that, it took over a month for me to recover. I struggled with sleep over the following weeks, each week sleep improving by a tiny bit. Each day I felt extremely drained, heavily foggy, struggling to do the most basic of chores. I could mostly keep up with work, but at the expense of house chores and personal projects. I flared up bad and was in a flareup for most of October. The flare would occasionally become extreme and my immune system was weak. Got sick a few too many times over the past month. Now it is early November and I’m starting to feel more like myself. I’m able to keep up with my chores and have resume work on my projects. I have good days and I have bad days, but the good days are starting to outnumber the bad days again.

Sleep is so important to manage fibro, the entire body weakens without enough of it. It was a hard recovery, something I hope to not have to go through again. If we get hit with another hurricane I have a nice generator ready to keep a couple of window units running.

 

Note: Brain fog is an issue today, grammar may suffer.

The Florida summer is finally coming upon us here on the Space Coast. The summer used to not bother me, overall I enjoy the warmth and extra sunlight, but these days the heat will easily exhaust me. Sometimes I end up dehydrated as I am terrible at maintaining hydration in the heat. Other times the heat makes me sick, triggering overbearing headaches, muscle weakness, and exhaustion. I have experienced heat sickness and dehydration periodically growing up in New England and only occasionally in my twenties living in Florida. Since the fibromyalgia became strong in my early 30s I’ve experience this heat sickness regularly.

While I was in my mid-twenties I purchased a home in an area many of my friends refer to as ‘the middle of nowhere’ in Florida’s Space Coast. Where the house is there are only a handful of other homes. Most of the lots are undeveloped with extremely tall pine trees interspersed with palms and well maintained 3 or 4 bedroom homes. It’s a nice quiet place to live, 10-15 minutes from most stores and the highway, about 30 minutes from downtown Melbourne, Fl. Having a quarter acre lot I proceeded to start adding gardens around the house and throughout the backyard. I would spend most of the day outside working on the gardens and house. Back then I could hop on my bicycle and knock out 15 miles in the middle of July, with only a rare flareup of exhaustion the next day.

When the fibro started to get strong I wasn’t able to do the physical labor of gardening, struggling to do the minimum maintenance. Many gardens died out and returned to grass, but I kept the largest most established gardens looking decent. Not only was the physical labor becoming difficult, but I was losing my heat tolerance, often becoming sick when outside. At the worst I would start to suffer heat sickness from standing outside too long. At one point I was on medication that made me highly prone to dehydration, thankfully that has since changed, but bad habits still lead me to occasional dehydration.

Hydration is super important, but I learned bad hydration habits growing up. I worked summers and most weekends helping my parents with their rental properties. While we would bring water with us, there were many times where we could only drink the water after we were done with our work. Same thing in school, you were only allowed water when they said you could drink. You learn to ignore the thirst, instead relying on the watch to tell you when you can hydrate, it is a very bad habit and hard to break.

Earlier this past week I was up on the roof trying to patch my skylights, I’m fairly sure the one above my kitchen is the reason for the bad roof leak(s). For the first half hour I was fine, but towards the end of the job the heat started to get to me, I was overheating badly. I was able to finish the work, get off the roof, grab a gatorade and lay down with the ice pack to help me cool off. I recovered from that by the next morning.

Come Sunday afternoon and a friend is borrowing my garage to do an oil change. I decide to work on the bus for the hour or so we’re outside. I go in and out of the afternoon sun many times, each time leaving me feeling a bit warmer than the last. Eventually I’m moving bus parts around and realize that I can no longer lift a door. Just minutes earlier I was able to lift the door without struggle, but now my leg muscles are starting to hurt as is my head. I struggle to put my work away, my friends are finishing their work. That’s when the dizziness starts to hit, I excuse myself and go inside to lay down with an ice pack. I made one big mistake that afternoon, I drank very little water or other hydrating beverages. Usually I’ll bounce back once i rehydrate.

I felt terrible for hours and even though I was rehydrating, my muscles were aching. I figured that I needed sleep and would be okay the next day. I’ve spent quite a few hot days outside working in the sun and heat, sometimes I’m fine, sometimes I get sick. I can be stuck in traffic in a car with weak AC and overheat, triggering a flareup. I can spend the entire day working on the yard and be fine, then the next week I will barely last two hours. Sometimes the fibro feels like rolling dice, you never know what you’re going to get on your next throw.

I woke up this morning feeling worse than when I went to bed, woke in a full fibro flareup. This is not normal for me, it may be the most severe reaction to overheating I’ve experienced, but nothing about living with fibro is normal. It was hard to move this morning, random pain sometimes triggered by movement, muscle weakness returned along with lots of stiffness. My wrists and hands ache, are stiff, and feel inflamed. My shoulders, arms, and legs are in a lot of pain. To add to it, I’m highly foggy, I lose track of what I’m typing easily and forget words. Luckily bad brain fog like this is rare and should be gone by tomorrow. I ended up having to take the day off from work so that I can recover. My day will be full of turmeric and ice packs, along with gentle yoga and stretches for the achy muscles.

One of the biggest issues I’ve had throughout my life has been infections. As a child I was prone to ear infections, had my share of eye infections and the standard chicken pox. These issues mostly went away when I was teen, only reappearing when the fibro became strong six years ago. At first I was only experiencing chaffing issues that started during my morning power walks. Luckily the issues stay minor until late last spring when I had a minor infection that cleared up quickly with a prescription, followed by summer when I picked up an intense infection that wouldn’t clear up easily.

Last summer’s infection grew and became itchy and painful, spreading across my left arm, but I was able to treat it and clear it up within a couple of weeks. The doctors believed I picked it when I stopped at a bench on a public park. I had a wound that hadn’t closed up yet and the doctors believe it got into the infection when I was sitting on the bench. That infection made it feel like my body was falling apart. At least it and every other infection I had seemed to clear up with treatment. The problem is, the infections kept on reappearing, which according to my doctors “they are most likely due to the fibro”.

The minor infection would sometimes reappear, but it was that bad arm infection that showed back up again. They showed up after experiencing chemical burns from a chemical that I’m highly allergic to. At first the chemical burns were puffy and itchy, but at first were healing. Soon them became infected, most recently they started breaking out with the same infection as last summer. This time I have cream on hand to treat the infection, but this means the infection was never fully cleared up. None of them ever cleared up

Based on what my doctors have told me and the research I’ve done, the issue is with the immune system. A side effect of the fibro is a weakened/compromised immune system. It’s why I’m almost guaranteed to get sick if I’m around another sick person, and why I’m prone to getting food poisoning from food that doesn’t make others sick. Because it’s an immune system issue, I may never be able to fully rid myself of the infections. The prescriptions are enough to make the infections dormant, but it only takes one trigger to reactive them.

I have hopes that an improved diet with probiotics will help. I used to take probiotics regularly, but stopped when I my IBS started to improve and become easier to manage. Probiotics help the stomach regulate its healthy bacteria, which over time can help improve one’s immune response. My diet has also been very mixed, sometimes very healthy other times pizza delivery. I’m not sure if these changes will actually help, but it won’t hurt to try and should at least help my digestion.

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.

My health was doing really well, minor fluctuations, but overall the best I had been doing in a long time, and then I wore myself out. Work gave us an impossible deadline, immediately followed by another impossible deadline. While I do both front and backend development, my focus at work has been frontend. For months we have requested a middleware to handle the majority of the logic and admin tasks. For months we were told they would find a resource to build the middleware. The middleware was axed a few weeks prior to the first deadline. We rushed, working non-stop, just barely delivering a functional, but clunky and unrefined product. They gave us two weeks to implement additional features (including ones not yet available in the API and have no technical documentation) and refine the product.

It was immediately after they gave us two weeks for the next deadline, that both myself and my coworker literally fell apart. Both of us now have health issues that were not bothering us weeks prior to the deadline. I have been fighting constant flareups, unable to stop the pain that returned. At this point I am worn out, only barely able to type this post. Most recently my right arm has started hurting, an extreme pulsating pain that can be triggered by overuse/overextension of most of my right arm and hand. This is a very strong indicator that I’m worn out, it’s time to rest. It is a very good thing that weeks ago I requested tomorrow and Friday off, I have to lay off the computer for a couple of days and I might have been forced to take the days off regardless. Hopefully a couple of days of fun and not having to use the computer will help. Not sure if it will be enough, but maybe it’s also time to slow down at work.

 

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.