Seem like? I hope no one you know ever has this awful syndrome. It affects your muscles, your nerves, and your brain. The pain is intense and fluctuates with the only blessing being there is no visible tissue damage.
The brain has much higher cortisone levels with less relief and the signals between neurotransmitters get glitchy increasing difficulties such as muscles losing reaction time or function but luckily these as temporary and intermittent. One minute you cannot feed yourself without dropping your spoon and an hour later you can make a puzzle.
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It makes you look crazy and like you are faking. It is inherited and managed with great difficulty. The “fibro fog” makes even the most intelligent of us unable to come up with the correct words at times. Funny as this can be, it is scary to not be able to trust your own brain.
Benefits include actually getting treatment, being given medication to help when the pain gets worse than childbirth and kidney stones (I have had both twice), and knowing that there really is some explanation for the difficulties faced on an hourly basis.
It affects sleep, waking hours, productivity, and energy and robs sufferers of being able to predict ahead. Cannot plan activities or having to cancel last minute gets very tiresome and devastating.
My great-grandmother lived to 99 with this wishing she could die every day. Nurses never believed her suffering. I have had symptoms starting mildly at 5 years old and progressively worsening over time. Now I cannot have more than a few minutes without some level of pain and other symptoms.
It is a horrible experience to live with. I used to dance for 4 hours and now can push through for a song with several minutes of rest before and after. I look vibrant but feel elderly. I often need a cane from falls and ankles giving out. Even just to help me get back up. Sleep isn’t restful and every action is followed by intense recovery periods. It is like a huge workout just from taking a shower.
But no scans or tests to prove anything… so of course, many Drs refuse to help.
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