Seriously, no two days are the same. I think that is the reality that most people can’t wrap their minds around. I have absolutely no idea what my pain will be like a month from now. The only thing I know for certain is that I will have pain. Every day. For the rest of my life.
I’d say it’s like being trapped on a roller coaster and you can only see two feet in front of you.
Although, if you pay close enough attention for long enough (I recommend a pain diary), you can get a decent handle on some patterns. Different factors have different effects, like weather and stressors. For instance, my primary influence (outside my control) is barometric pressure. I am a human barometer. If I tell you that the weatherman is wrong, trust me, he’s wrong.
At this point, I’m realizing that this is coming off way more negative than I intended. There is much more to my life than pain, that is just one part of my existence on this planet.
By the way, this human barometer lives in north-central Wisconsin.
I don’t recommend the combination.
Sorry, I got to add one more thing. Fibromyalgia is neurological, not psychological. This is important. Those two words do not mean the same thing and they are not interchangeable. If my pain was “all in my head,” I would not be able to predict the weather.
Three Fibro Warrior shares their experience with fibromyalgia.
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1st Fibromyalgia Warrior
In my experience, the biggest misunderstanding is that people think we can control it. It’s unlike other diseases/syndromes/etc. because it’s so inconsistent. One day I could get up, put on makeup, work hard, be cheerful and function apparently like everyone else (even though a good day is still full of aches, pains, symptoms, and exhaustion-but relatively it’s a good day) and the next day has explosive diarrhea all day, migraines, pain so bad I could scream, exhaustion, muscle weakness, confusion, etc. so bad I can’t function.
People around me have acted like I’m choosing the days I’m well or making excuses because they think I’m “well” because I had a good day, week, or month. They also seem to think that normal things like exercising a lot or doing common sense things that others do will help a me-every person with fibro responds to meds differently and has different symptoms and other problems.
Pilates messed up my bulging discs, some meds made me feel like a zombie, some did nothing, some worked for a bit then quit…The only thing that has worked for me was resting, minimizing stress, learning how far I can push myself, yoga, trying to stay generally as healthy and positive as possible, and getting unsupportive draining people out of my life.
When I get overwhelmed with life, family, work, it gets worse-people to think we just want to be lazy but for whatever reason overwhelmed brains make us nosedive really quick. It’s in the brain, nerves, muscles, and affects our neural pathways, we tend to have problems with sensory overload and our brains start shutting down and misfiring-the constant pain and fatigue put our whole system on the edge, so too much of anything can send us over the edge. Have compassion and empathy for everyone who fights a chronic illness.
2nd Fibromyalgia Warrior
The most misunderstood thing about fibromyalgia is that it’s actually a disease, a complicated one at that. Because you look normal, people, including family members and doctors, don’t think you’re sick. And as for finding someone who can heal you, they don’t exist except for the marginally few who have $25,000 or more to spend.
This is an expensive disease to treat because it requires expensive supplements, doctors who don’t take insurance, treatments (like IV nutrition and Ondamed) that insurance won’t pay for, and experimental procedures. Not to mention the organic food you have to eat because of your already toxin-filled body.
I have been sick for 35 years and some of my family members still don’t believe I’m sick.
I apologize for whining. You pressed my hot button today. May you have an understanding family who loves you and wish you well. You will need their support.
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3rd Fibromyalgia Warrior
I think that the most misunderstood thing about fibromyalgia is that there is no cure. There will be times that we feel better due to various meds or treatments, but there is no cure. For those of us with true Fibromyalgia, we will never be totally well.
Another misconception about fibromyalgia is that our days do not redundantly flow one into another. Each day is different. Some days, my hands are completely immobilized. Other days, I can’t put any weight on my right hip.
Still another day, maybe one of my knees won’t hold my weight (and I am not considered overweight). The pain is always there it is just that some days it might be worse in one part of the body than it is in the other.
When I am in a flare, all bets are off. All of me is in complete agony. You won’t hear from me. You won’t see me. I will be hiding under the covers in bed, in the fetal position, whimpering at best. Unfortunately, flares can last for days, weeks, months – I have even heard of people being in a flare for years. For me, once I adjust to my new reality of a flare (which usually takes a couple of days at the minimum), I force myself to move.
I hate it, but I know that if I stay completely immobilized that I won’t be able to get through it. My best way of dealing with extreme pain is to distract myself. This can include watching TV, reading, writing (not longhand – on the iPad as longhand is impossible when I’m in a flare), cooking, and spending time with my significant other.
Sometimes this is easier said than done, but unless something else is wrong – like when I was immobilized by the shingles for 5 weeks earlier this year – but for me, forcing the issue is key to getting through a flare with any sense of sanity.
Last but not least is the simple fact that no matter what we do, it does actually get worse over time no matter how hard we try not to let it happen. These things are more for those of us who have experienced our trigger event which sends our fibromyalgia from manageable to having to learn to live a completely different life because there is no real relief ever again. My trigger event was a fall down half a flight of stairs in 2009. I have been in constant pain ever since and was diagnosed shortly thereafter.
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