16 Ways to Imagine What Fibromyalgia Disorder Feels Like
1. “Imagine the worst sickness, fatigue and pain and your head is in a deep fog where it made you think to go to the hospital. Now imagine feeling like that every day and knowing if you go to the hospital they will likely find nothing wrong and send you home and tell you to see your family doctor. That is Fibromyalgia Disorder.
2. “Imagine waking up in the morning feeling exhausted, as if you hadn’t slept in days. As you lie in bed, trying to rustle up the energy to get up and make your way to the bathroom, you wrestle with the thought: ‘Can I make it through another day?’ Then imagine that everything you do, even the smallest tasks, feels like you are walking through waist-high wet concrete.
3. “Picture a phone. There’s something wrong with the charger. No matter how much you try to charge it it never charges past 50 percent, if you’re lucky. You close all the apps so you can to try to preserve battery, but it’s no use. It quickly drops back down to zero percent in no time. Now imagine you’ve been hit by a bus, and you are the phone.
4. “I tell people, ‘Do you know how you feel when you have the flu? Body aches all over, everything hurts even your hair and nails? Yea, those are my good days.
5.“Think of the worst flu you’ve ever experienced, and pair that with falling down three flights of stairs, straight into a beehive. That’s Fibromyalgia Disorder.
6. “For me Fibromyalgia Disorder is fuzzy and foggy thinking and on a bad day moving feels like I am trying to walk through thick Jell-O. Doing normal things causes pain. Total exhaustion without the benefit of restful sleep.
7. “It’s like your body was in a car accident while you had the flu and you never quite got over either one of them.
8. “The worst thing about this illness is you can’t [imagine it]. There are way too many symptoms that I think people get lost after you list the first 10. That’s often why people with fibro feel so isolated and turn to the online community to find people who understand it.
9. “Sometimes when I take off my clothes and look in the mirror I expect to see bruises everywhere because my body hurts and aches so badly. Then there are times where I wish I bruised all over because then people might take my pain seriously.
10. “Imagine being wrapped in a burrito by a blanket made out of those massage chairs with the balls in them. Except you never know how many are going to be pressing down on you or where. Some days its like the deepest muscles in my body are getting repeatedly punched, while others it feels like my skin is raw. All the while I can’t think straight, like my oxygen is running out from being crushed under the weight and pain.
11. “My body either feels it’s been hit by a truck or other days somebody has a voodoo doll sticking pins in and twisting them with Fibromyalgia Disorder.
12. “Pain so extreme that you feel like vomiting. It’s hard to think, eat, sleep or do ‘normal’ things. Your sensors are off. It feels like noise sounds in a cave, everything echoes. Smells bother you. Lights hurt your eyes and you feel dizzy like a carnival ride.
13.“It’s the ‘Princess and the Pea’ syndrome… every possible sensation is heightened. Being on a bridge or near an escalator feels like an earthquake. You smell things that no one else does. And you can’t tune out things like buzzing lights.
14. “Like getting Charlie horses in muscles you didn’t even know existed. When you go out to eat, you constantly squirm because the seat hurts your back. You’re always tired, and even a full pot of dark roast coffee won’t fix that.”
15. “It’s like the day after a strenuous workout, with the stiff, sore muscles. Add a sunburn and a headache, then the flu on top of that. Fibromyalgia Disorder fatigue feels like your blood has turned to cement in your veins.”
16. “I sometimes have severe Fibromyalgia Disorder episodes that feel how it feels when you touch a battery to your tongue when someone dared you in your younger years. It’s feeling that for a constant hour or so before pain meds kick in.
Most of these are good but I really have a problem when people say things like, “the worst flu you’ve ever experienced, and pair that with falling down three flights of stairs, straight into a beehive” or feeling like they’ve been hit by a truck. There’s a slim chance that anyone has had the worst flu and fell down three flights of stairs into a beehive so using that as an example makes more people doubt the severity of what we’re feeling.
Could you imagine how bad that might feel!? Sounds pretty horrible..right! That’s what they mean…I understand if you dont have it…its hard to understand…well I do have it…and that analogy to me was spot on. For instance..right this moment as I am typing this to you…I am feeling like I am being stung by bees all over the top of my upper back and all across the shoulders and lower neck…I cant make it quit..
So I sit her and flinch in pain and try and take slow deep breaths to get through it until it decides to stop ..and some days it doesn’t…I pray this isnt one of those days.
Sandy…I do see that you also have fibro…I misread prior…I see now where you said “doubt what we’re feeling” I hope you’ve found something to alleviate your pain..
The meds used to treat it…I cant take due to side affects causing me other health issues.
Every single one of those symptoms are horrible, debilitating, depressingly constant yet invisible. They are though also in fact, classic symptoms of Lyme disease. Fibromyalgia has no test and no results…just the patient lists the symptoms and gets told it’s fibro. I don’t think that’s good enough.
Anyone with these symptoms, get your bloods sent to Armin Labs in Germany for Lyme and co-infection testing and if the tests come back negative then explore other avenues. Your body is crying out in pain and flu-like symptoms for a reason!
Kindest regards. ❤️
I have explored every avenue available over 30 yrs since I was diagnosed with this. I wish I could put a picture here of my hands and legs & feet. my palms are beet red and it’s been like that from the beginning but every time I said something about it 17 diff specialist & Dr’s said oh that has nothing to do with it. But they have no clue what so ever what causes it . Just recently I read an article stating that they have discovered it starts in the hands nerve endings. So apparently I was right all these years but still no info on why , what , or cause or cure for it.
The same thing happens to me. I had a few doctors tell me it is Raynaud sydrome. Do your finger nails turn a blueish/purpleish color also? If so, you may also have Raynaud. It is a condition that affects the circulation in the hands and fe8et. Just a thought. Hope it helps.
Are you saying people are making up fibromyalgia and it’s symptoms?
First of all we don’t just get told that we have fibromyalgia. We have a serious of test including Lyme disease, lupus, multiple sclerosis, and anything else that can be ruled out.
We get judged enough without being told by outsiders that we need better treatment because we just take fibromyalgia and run with it.
There is a test, something, I’m not sure what, is run up your back. That test was done on my wife about four years ago, she has had fN for thirty years, they were making sure after 26 years. We live in Scotland. No real treatment though, Oxys and clonazapam.
The reason the example of flu is used is because your body aches the same as if you have the flu. Every part of your body hurts. There is more to it than just those symptoms there are other conditions that also come with fibromyalgia which I have them all. I had my blood checked for several things I was even checked for MS and none of them came back positive accepting for rheumatoid arthritis and fibromyalgia. As I said before there are also other conditions that come with this. it is always wise to have your blood checked and I’m sure as my doctor did the others do as well. If you know anything about this disease / condition then you would understand what it’s like for those individuals. There are also different levels of severity from one person to another. It’s hard enough living with this and then have someone to doubt you. If you actually have it or know someone that you live with that does the understanding for you I’m sure would be better.
My FM is hereditary. My grandmother wore slippers because of sore feet & passed away from septacemia of the face. I have giant urticaria episodes (almost whole body, looks like I have facial cancer), & almost all of the symptoms. My fathet also had many of the symptoms. My daughter has also been diagnosed with FM plus quite a few other things. I also have lupus.
CarCrash: our body is crying out because of fibromyalgia. You may not believe in it but everyone with fibromyalgia does. Our symptoms are real and excruciating so please don’t attempt to make people feel bad or crazy for believing in what their body is telling them. FYI: since you clearly don’t know we go through a multitude of tests before we’re even diagnosed with fibromyalgia. My doctor ruled Lyme disease out along with multiple scoliosis, and other diseases too. It took forever for me to get diagnosed with fibromyalgia so don’t think we just SETTLE for any old answer for an excuse to our pain. I’m sure everyone that has been diagnosed with fibromyalgia hasn’t ALL been misdiagnosed!
I hate when people who has not experience this horrible disease can tell you what to do, how to do it, when to do it when you have already done everything you possible can. This describes Fibromyalgia perfectly and in some ways it can be even worst. I am a Fibromyalgia warrior! I fight daily, but sometimes it wins and it is nothing I can do about it.
OMG..I’m not the only one who uses those words. Princess and the Pea syndrome….. Goldilocks syndrome…. Wow!
Having actually fallen down a couple of flights of stairs, once only four months after my MS was officially diagnosed, please let me assure you that the only thing I can compare to that is nothing! I will say that Fibromyalgia magnifies sounds into deep, sharp, breathtaking pains & bright flashes of light. It is like being zapped by tasers & burned with slow burning coals & being licked by a flamethrower. It is like your body is a perfect bell that rings every pain, every touch, every ding, for hours. It’s like being fully clothed and soaking wet with paste-thick fatigue. How can I get from here to there without collapsing?! It does feel as if there is a voodoo doll with my name on it that is in the hands of someone that thinks it’s a joke. It feels like the sky has fallen on my head, shoulders. Nails, nails, & pins & needles. Even the most tender and loving touch stings, rings, pokes, burns, and jabs. How does one bridge a gap like that?! ?
Cool air blowing on me causes me physical pain. Doctors offices are the worst! I can go in for a routine check up feeling ok, but be hurting so bad, that it takes me days to get over it. I have had fatigue so bad that I was so thirsty, but I didn’t have the energy to ask for something to drink, or to tell anyone what was wrong with me. My bones hurt for no reason at all, and no medication has ever helped me. ?
I was diagnosed with Rheumatoid Arthritis ten years ago, after having symptoms for many years before. I was also tested for Lupus and several other diseases, which all came back negative. I was diagnosed with Fibromyalgia about 5 years ago. I don’t sleep well, due to pain and therefore wake up exhausted. Even the simplest things, like brushing teeth, washing hair, washing dishes etc. Are exhausting. Pain varies from one day to the next. For example, Recently I had a day where I had nerve pain which felt like my whole body was on fire. Then a day where it felt like I was being stuck with pins all over my body. Loud music can set off the pain. As well as cigarette smoke. I have migraine headaches that last for days. Some days I feel like I have the flu and I ache all over. The worst part is being told you’re lazy, when you can barely drag yourself out of bed.
It is not Hereditary, no one in my family has it, just me! It sucks so much. But it’s the card I was dealt and I have to live with it, it’s so hard to deal with, all the test I went through 3 years, everything came back negative, I do have a good Dr. That helps me with my pain management, I hate having to take pills just to cope the best I can. Morning are so bad, I have to wait for my meds start working, usually after the second dose, I can get up and do a few things. Then I have to stop and rest, I do this all day, do something then rest. The pain gets so bad, when I wake up in hurting so bad, so tired but can’t go back to sleep bc of the pain. I’m blessed with a husband that instants my struggle, if he comes home and something isn’t done he knows I’m having a bad day, but I try to make sure he comes home to a clean house. I can’t do anything right now bc of the flare up in having. I hate it when people tell me you need to take a nap, naps do not help. and hope you get to feeling better, knowing I won’t. I’m praying for all of you that have fibromyalgia.