Fibromyalgia is...

In order to give people a greater understanding of what it feels like to have Fibromyalgia, I decided to start posting examples from my day to day life of what “fibromyalgia is”. And also maybe give some insight to those who have recently been diagnosed and don't know what to expect or if the symptoms they are experiencing are normal. There are a lot of things to adjust to, but you can still find happiness with this life, so if you are new to this journey, do not be disparaged. If you want to talk about it or have any questions, free to message me but please check out the FAQs/Concerns and #answered asks before submitting questions, as I may have already answered them. Disclaimer: I am not a Doctor, and cannot diagnose anyone. This is simply my experiences with fibromyalgia, and what I have learned (from the experiences and from the extensive research I have done). I do not speak for everyone who has fibromyalgia as others may experience things in a different way. Fibromyalgia varies greatly from person to person, so just because I experience a certain symptom, it does not mean that everyone experiences them, or in this specific way. If you have fibromyalgia feel free to use the tag #fibromyalgia is or send me your own examples of what fibromyalgia is! 

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Fibromyalgia is...

Waking up to find that your tongue is swollen up to the point where there are sores on it from the grooves of your teeth. 

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Fibromyalgia is..

Having to remind your family that you have a condition when you get a flare up that keeps you in bed after a “good” month

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Fibromyalgia is...

An ever developing condition that seems to throw a (few) new symptom(s) in for for good measure, every time you feel like you have made progress in coping with your illness.  

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Fibromyalgia is...

Laying in bed to go to sleep, taking deep breaths and actually getting your body to almost relax… But then your muscles have no idea how to deal with it and your whole body is filled with spasms and you’re jumping around in bed involuntarily.

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Fibromyalgia is...

Thinking you’re being over dramatic when you say you’re really in pain because it’s more of a dull ache, then the next day being in real immense pain

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Fibromyalgia is...

Struggling to maintain a healthy weight because of the way the symptoms and/or the medication side effects affect your body.

(Such as:

Gaining a significant amount of weight because your body’s metabolism is trying to conserve energy [by saving the fats, nutrients etc] to combat the condition, your body is not able to properly break down the food/nutrients so it stores it instead, and/or your body is not in a state where it can exercise enough to burn it off the weight, etc.

OR

Loosing a significant amount of weight because of your body’s metabolism is burning through all the energy and fat supply it has to try and deal with the condition, your body is not able to properly break down the food/nutrients so it just expels it instead, and/or lack of appetite/nausea, etc. )

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Fibromyalgia is...

Being judged for sitting in priority seats on the bus, because walking is so painful it’s making you feel faint

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Fibromyalgia is...

Not being in a state where you can use your eyes much, if at all, because of the amount of pain/symptoms affecting them. 

(Such as:

-light sensitivity [light causes significant-extreme pain, contrast is off so everything is too bright to see with surrounding areas too dark in comparison to see, depth/object perception is skewed, etc.]

-dry eyes [makes eyes much more sensitive to light, air, scents, smoke, etc. Causes pain such as burning/stinging/scrapping etc., and makes eyes hard to move because of lack of lubrication.]

-muscle fatigue and spasms [if muscles aren’t responding correctly it can’t properly move from side to side to pick up information, and your pupil cannot properly expand and contract affecting focus and light intake. It can also cause eyes to become crossed or separated which in turn causes blurred/double vision, dizziness etc. Eyelids also can get in the way of being able to see if affected by spams/fatigue etc.]

-nerve pain/fatigue [since nerves are vital to process visual input, it can cause pain to increase significantly in the nerve pathways between the eyes and brain and signals can get dropped due to the fatigue.]

-cognitive difficulties [if your brain is very foggy it can be challenging for your body to processes the information being sent from your eyes, so you may not be able to make sense of what you may be seeing.] )

[fibromyalgiais-blog]

Hey all,

I’m sort of back again - I hope. Been really struggling with my eyes lately. I have been trying to learn coping mechanisms and tools to help me during these times but it is a very slow process at the moment.  Between the fog, having my body actually responding the way I am intending it too, and the fact that most accessibility features out there that I have found for those with vision impairments seem to rely on you having a health body beyond your eyes, it is taking me a while. But I am making progress! :D

I will be getting back to all the messages in my inbox, and posting some more, but I will be working on it slowly as I am definitely still low energy and need to be really vigilant of my levels at the moment.

Thanks again for your patience, and all the submissions while I was gone!

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Fibromyalgia is...

Having difficulties swallowing/digesting things because your body has not produced the proper about of saliva/mucus needed to do so.

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Fibromyalgia is...

Needing to use softer (more expensive) toilet paper, because the cheap stuff is too rough on your privates/skin and is quite painful to use. 

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Fibromyalgia is...

Needing heat (such as a heating pad or warm bath) to help release some of the  tension in your muscles and lessen some of the pain, but it is too hot where you live (currently or always) so you can't without risking overheating/heat exhaustion/heatstroke. 

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Hi, I don't know how many of your followers are parents but there is a really great support group on Facebook (its basically the only reason I use Facebook anymore) called Parents with Pain. You can vent, get support, ask questions, etc. Everyone in the group is super nice and its been a great support resource for me. Not trying to drive away any of your followers, just wanted to suggest an additional resource if any parents need it! Love your blog!

Thanks for sharing this! I’m so glad it has been helping you and I appreciate you passing it along! ❤️

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Fibromyalgia is...

Needing to take an elevator instead of an escalator because it makes you too lightheaded/dizzy/nauseated, you are a high risk of falling because of balance/lack of strength to hold onto rail, and/or your mobility/assistant device(s) aren’t escalator friendly.

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Fibromyalgia is...

Not being able to make/needing to avoid making facial expressions because your face is too painful and/or fatigued. 

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Fibromyalgia is...

Having difficulties swallowing because of the fatigue/pain in the muscles in your mouth/tongue/throat/esophagus etc. 

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Fibromyalgia is...

Not being able to orgasm because your genitals are/become too sensitive, so it just becomes overloading pain, instead of feeling any pleasure.