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Could it be Fibromyalgia
For awhile now, I have been so exhausted I can barely function. I went to see my PC 2 weeks ago and almost fell asleep waiting for her. I also feel achy all the time, the same type of achyness as the Flu. I also have been dealing with issues like memory loss, spasms, feeling dizzy at times, losing control of my bladder while sleeping and not realizing until I wake up in the morning. I saw a Neuro about the memory loss etc, she ordered a bunch of tests and everything came back as "We can't find a functional reason as to why all this is happening to you." I saw a second Neuro at a Brain and Stroke Center, and she said the exact same thing. The exhaustion and achyness was so bad a few days ago, I couldnt even get off the couch to make dinner for a few hours. I emptied and refilled my dishwasher and I had to sit down because i was so tired and achy. I get so achy that it hurts to lay down to rest, so I have to take Tylenol to make the achyness lower enough for me to sleep. My PC ordered a bunch of blood work and i see her in a few weeks. We did discuss both Chronic Fatigue and Fibromyalgia, and she is considering (for lack of a better term) that it's Fibro. Anyone have any thoughts? And if it turns out to be Fibro, does anyone have advice as to how to tell parents who think you're making it up? Please don't judge me. thanks
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@SusanEllen66
I plan on it. I have a friend who has Fibromyalgia, and I told her my aches feel like they do when I've had the flu. She said that's how it feels for her too. I see my primary care doctor on July 13th, so I am going to tell her more about it
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4 Reactions@kjs831 a word of advice, don’t let anyone tell you it’s all in your head! You have to be strong!
I know that you are strong.
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3 Reactions@SusanEllen66
thank you. I appreciate how kind and helpful you have been.
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1 ReactionHere's an article that may assist you with your parents:
https://www.globallymealliance.org/blog/how-to-respond-to-but-you-dont-look-sick
Have you read about the "spoon therapy" and chronic illness?
The "Spoon Theory" is a famous metaphor created by Christine Miserandino, a lupus patient, to explain the daily reality of living with a chronic illness or invisible disability. It uses "spoons" as a visual unit of energy to show how every daily task requires a calculated, limited amount of effort.
While healthy people generally wake up with an unlimited supply of spoons to do whatever they want, people with chronic conditions start their day with a strictly counted, much smaller batch (e.g., 12 spoons).
The Math of Daily Life: Every basic task costs a spoon. Getting out of bed might cost one, taking a shower costs two, and getting dressed costs another. By the time a "spoonie" has prepared breakfast and brushed their teeth, they may have already used up a significant chunk of their daily energy.
The "Invisible" Struggle: The phrase "but you don't look sick" is hurtful because it ignores the exhausting mental math required to survive the day. Someone may look perfectly fine or put-together on the outside, but they have already made painful sacrifices—like choosing between eating dinner or taking a shower—just to get through the day.
No Reserve Tank: When your spoons are gone, they are gone. Pushing through means "borrowing" energy from the next day, which usually results in extreme fatigue or a severe flare-up of symptoms the following morning.
The theory provides a powerful way to reframe how people view disability, shifting the focus away from assumptions of laziness and toward the careful, necessary rationing of energy.
To read the original essay that started the community, check out The Spoon Theory by Christine Miserandino.
@luvpets15
Actually I have heard about Spoon Theory, I did an IOP and it was part of the skills taught. Personally , don't "subscribe" to S.T.. I talked to my parents about it since they are both Psychologists (my Dad has been one for 45 years) and both of them had never heard of it. They both googled it, and said it was ridiculous. I don't use it. But i know some people do use it and find it helpful. Now Im in alumni groups from the same practice and it never comes up. But that's why there are so many ideas/tools, what works for some people, won't for others. My best girlfriend has Fibro, and Motrin works better for her pain. I can't take Motrin too much cause it upsets my stomach. I was using Tylenol, until I found out too much of it makes your BP high. So now I'm gonna have to use it sporadically so my BP stays normal.
I'm looking at Fibro kind of the way I look at being Autistic, its a spectrum of symptoms/traits. Some therapies and meds will work for some people and some people have a whole other way that works for them.