Could it be Fibromyalgia

Posted by kjs831 @kjs831, Jun 27 4:51pm

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

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@kjs831 that is a great way to determine if you have fibromyalgia.
Now, if I were you, I would show the tender point chart to your doctor and ask them to see how you feel after they perform the test on you.
If they see you react, hopefully you will get confirmation.

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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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Profile picture for kjs831 @kjs831

@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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@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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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@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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@SusanEllen66

thank you. I appreciate how kind and helpful you have been.

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Here'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.

REPLY
Profile picture for Vanessa Valentine @luvpets15

Here'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.

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@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.

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Thank You to all of you who have been supportive and helpful. I saw my Doctor and she agreed it is Fibro. She knows I research and I only use Mayo and/or Cleveland Clinic. She is giving me Lyrica to start, and also I have to go to her office to get B12 Shots. She also wants me to get up every hour while I'm awake, and walk for 5 minutes, which I need to do anyway.

I'm definitely staying in this group because 1) you all are so nice and 2) I want to keep learning.

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Profile picture for Vanessa Valentine @luvpets15

Here'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.

Jump to this post

@luvpets15 I think using Spoons as a visual of this issue is a bit strange. Hard to focus on the actual issue of expenditure of energy, the Spoons get the focus! There are specific energy abilities for each of us. Not all the same. Working to define your energy expenditure for an average day will show just how much energy you use per activity. Then finally define what scale to use. Whether it be spoons or grapes or toothpicks, you can visualize what activity uses the greatest expenditure of energy for your condition.
I know my exertion rate for each activity-I know by how my body responds. Don’t personally need a visual (spoones, etc) but some may benefit.

REPLY
Profile picture for Vanessa Valentine @luvpets15

Here'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.

Jump to this post

@luvpets15 I find this a great way to explain my energy ability each and every day. Exactly. I could never quite put it into words. I would tell my son by 2pm or sometimes before I’m exhausted and just can’t do anymore. As far as I understand it, this is just a way of explaining the malaise/fatigue, not that it’s a process to cure it? I don’t think it’s ridiculous at all. I know this is how I feel and didn’t quite know a good way to explain it. Rather I tend not to go around trying to explain it to anyone just those very close to me and instead just refrain from doing much of anything socially for fear of letting others down. I don’t think anyone doesn’t have fibromyalgia can actually understand. Period. I don’t expect anyone to fully understand. I probably wouldn’t understand it if I didn’t have it.

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Profile picture for jakefix82 @jakefix82

https://www.fibromyalgiafund.org/why-fibromyalgia-muscles-hurt/
Check this research out. I found it very descriptive. Essentially, though, it goes back to square one when I was diagnosed 45 years ago. My meds then were low-dose Elavil (I took the generic) for stage 4 deep sleep, Naprosyn (anti-inflammatory), Parafon Forte (muscle relaxer, I take the generic).

Now that I’m 77, I can no longer take Elavil (hallucinated after 5 years) - use C-Pap machine that doesn’t make me feel rested; can’t take Naprosyn or anti-inflammatory drugs - had internal bleeding a few years ago; still take Parafon Forte - can take this muscle relaxer for a couple days at a time - split 500 mg dose in half…puts me to sleep, makes me groggy, take on as-needed basis only.

Always tired, more muscle tightness - have had two UTIs - each one, muscles in area of uti clenched and wouldn’t loosen up for months. First UTI it was my left hip. Second UTI, it was my left flank.

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@jakefix82

I can't do a C-Pap, even when when taking Xanax, it still caused me so much anxiety that I cant wear one. I had a colonoscopy last year and the Anesthesiologist asked me prior to her knocking me out if I had a problem with a mask on my face. I said yes and told her about the C-Pap. When we got into the operating room, someone went to put the oxygen mask on my face. The Anestheisologist told her not too until the drug took effect.

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Wow! So sorry! I use the nasal pillows with my CPAP. Haven’t used the CPAP at all this week, as recovering from excruciating stiff neck - the head gear aggravates it.

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