Cycle of Fibro *guest spot Mary A Miller*

CYCLE OF FIBRO

Let’s talk a little bit about the distinction between being in a flare, just being “achy”, being “oh hell no”, and being in a good phase. There really is a clear distinction, (I at least see), and when we are in each area, this is what gets others’ thinking that we “just are ill all the time” (at best) or we’re hypochondriacs at worst.

1. Let’s start with the Good phase period, because it’s so rare in itself when we have fibro. This is when we are ‘firing on all cylinders’.You are alert, you may require caffeine from time to time to KEEP alert, but you are pretty clear, on the ball, and in relatively little pain. It may hurt if you over extend yourself, but overall, moving is fairly easy, food doesn’t seem to fight you, nausea is at bay, and dizziness isn’t a factor. Most people will still feel ‘some pain’, but it’s very receded into the background. Music is wonderful, even load noises don’t really bother you, other than”geez”.

2. “Achy”, this is the phase before being in a flare.It’s where getting out of bed is difficult, gross dexterity is hard, but not impossible. The brain still functions, but clunky…It’s like thinking is a little ‘off’ hard to find words to discuss what we are feeling, but you can eventually “find” words. Sleep is hard, but not difficult, sitting is difficult, but not impossible, driving maybe a physical challenge (like twisting to see out your side windows), but you can make it through the day, as in with short breaks, you don’t need constant relief all day long, nor to do you find chatting with friends impossible or chatting online hard to do. Music at this point is good, because it relaxes you and eases you towards meditation, or sleep.

3. “Flare”. We’ve all used this term. A flare lasts for the most part between 3-7 days can go longer. When in a flare, we’re confused, we sweat at night or when we move too much. We itch. Water can be either your best friend or your worst enemy. Heat plays an important part of dealing with a flare: too much heat and we melt (many of us are ‘allergic”to the sun), we weirdly don’t sweat in the sun right, though we sweat when weAREN’T moving, our thoughts are jumbled. We will forget very important things at this point, (this can be a good key that we are in a flare, if we ‘forget’ that we are hurting: by forgetting appointments, the date on the calendar, and other relatively ‘safe’ forgets, not things like the stove is on, etc. good chances we are in a flare), and an inability to write clearly, chatting with friends is a labor, that emailing, etc. Is just too exhausting. Our pain levels are variable at this running wild, from 5-10 (or smack yo’ mama), and wildly back to 5 without reason, or even logical idea. Sound has become “not your friend”, music is still okay, but irritating. It may help through the night at least disrupting your constant thoughts, because at this point, your brain is still active though your body isn’t.

4. “Oh hell no”, is the phrase that I like for this period: this is usually the absolute worst feeling at the bottom of a flare (think of a circle, “oh hell no” is the bottom of the bottom). This is where “hitting the wall” becomes a true reality. You can’t get out of bed without bribery. Your body craves the want of sleep, but you can’t sleep.You want softness, but nothing is soft. 

Your brain is like “on fire”, because people can talk, their words make NO SENSE. You are easily agitated, because you body is hurting so badly. You want cold, but cold is TOO cold, You want hot and hot is TOO hot.There is no place that is comfortable. In this space, you sweat 24/7, noise is too much, period. Watching TV is a problem, you can ‘t focus, nor can you sit through a movie longer than 2-5 minutes without squirming endlessly, your mind will not focus at all. 

All sound, even music is an irritant. All action of any kind is beyond labored. Talking takes too much energy, thinking takes too much energy, light outside is not your friend, nor can you seem to handle light bulb light well. It is a very irritable space, you don’t want to talk, your body is inconstant pain, it doesn’t pull out. This phase is the most critical for us, because sleep is IMPOSSIBLE, driving is dangerous, and so is cooking: this is the phase where we can set a house on fire, without thinking, because at this stage, there is NO memory. All days seem to run together as with time. We may well be educated people, but in this part of the cycle, we’re like 90 years old; we are just “gone”.

It’s at this point, where living is the most precarious, because we aren’t liking life, we can’t handle ANY stressors of ANY kind, and we cannot remember what life was like outside of this phase. Many people at this critical junction, if not reminded or supported can emotionally tip over to the ‘dark side’ and literally take their lives.

This period can be caused by stress, by severe weather reactions, by severe body changes (including post surgeries), by being in a ‘flare’ cycle too long, by lack of sleep, by prolonged exposure to crowds without a break, vacations (this sounds odd, but too much time away from home, too much time in a bed other than our own, too long exposure in unfamiliar surroundings, food that we normally don’t eat , etc) can throw us off.

Doctors have problems with us in any of these phases, other than the first phase. The reason: 

1. We are less clear when we are in a pre flare position and it only gets worse from there. 

2. we don’t have the patience to deal with them, their education levels of ‘what THEY understand about fibro’ and how they intend to treat it, based on that limited understanding.

3. At this point, we are also under the gun to talk clearly, which we clearly CAN’T do. It’s a cognitive problem, not a personality problem, they fail to understand, they get impatient, because their time is limited and we are expected in 5 minutes to speak, think and respond clearly.

Here’s an additional conundrum: We won’t remember the drugs they’ve tried to put us on that failed in the past, they don’t remember the drugs they’ve tried and have failed in the past, BUT you will be the voodoo doll that will be taking the drugs, nerve blocks, etc for pain medication, without any further help from anyone about what didn’t work and why. This is why having our medical records is important, and why our files are so damn thick.

okay, hope this helps! I know this is a long post, but I wanted to discuss the cycle of fibro and how it affects us, why folks don’t seem to understand our condition, if we fail to see a cycle ourselves.

As I am writing this, in a severe flare area, close to “Oh hell no”, so writing this has been hard, but I wanted to get this out.