What I wish others knew about living with fibromyalgia…

Today’s the day…May 12, 2021 – International Fibromyalgia Awareness Day!

Last month, I posed a question to my blog readers and social media followers: What do you wish others knew about living with fibromyalgia?

That blog post, my email inbox, Facebook page and my “What Works for Fibromyalgia” Facebook group were flooded with comments, and as usual you guys didn’t hold back! As promised, I’ve compiled a sampling of the responses below.

I’ve also created graphics that you’re welcome to share on social media to raise awareness for fibromyalgia on this day (or any day, for that matter). To save an image, you should be able to right click on the graphic, save it to your computer or the photo stream on your smart device, and then share it wherever you like.

If you missed my prior invitation, feel free to share what you would like others to know about living with fibromyalgia in the comments below!

Amber W., Colorado, USA

“That just because I’m younger doesn’t mean I can’t be exhausted or in pain. I get this a lot from coworkers but I don’t always want to share that I have fibromyalgia.”

Angela J., Wisconsin, USA

“We need extra help but most of us don’t want to ask for help.”

Angie B., Georgia, USA

“Most of us living with fibromyalgia used to be outgoing, vibrant and energetic people. We did NOT want this or chose this. If we could get rid of this life-changing disease, we absolutely positively would! Most of us don’t ask for help because we already feel useless, so just help however you can.”

Audrey A., Canada

“I’ve said many times over the years that I wish I could touch someone and they can feel for two days just a small portion of what I feel on a daily basis. I’ve been told over and over, ‘Why can’t you be the person that you used to be?’ This was before this horrible disease slowly invaded my body one excruciating thing at a time. You try to explain it to people but they just don’t get it. I try to compare it to something physically traumatic that they’ve been through but unfortunately it only touches on a very small amount of what we have to deal with on a daily ongoing basis.

“The older you get with any other medical issues that you’re dealing with just continues to add to the existing pain already attacking our bodies. There are days that I literally ask God to please take me as I can’t do this anymore. There are days that I spend most of my time in bed as that is the most comfortable place to be.

“I try not to complain because I’m tired of hearing it so I know that others don’t want to hear it either. I’m tired of the pity and sad reactions that I get if I do say I’m not doing well. I even sometimes believe that I’ve been a bad person, and this is my penance for being a bad Christian but I was told God doesn’t work like that, which I knew but I was trying to make sense of this horrible disease. I don’t even wish this upon my worst enemy.”

Carla G., Indiana, USA

“My house is not a mess because I’m a hoarder. My house is a mess because I can only work on it for about one hour per day. That hour is not consecutive.”

Caz H., Invisibly Me, United Kingdom

“Just because there’s no blood test or MRI that can diagnose fibromyalgia doesn’t mean it doesn’t exist. It’s something you can’t truly, totally fathom and appreciate unless you’ve experienced it for yourself, at which point any doubts about its existence will probably evaporate rather quickly. The symptoms, including chronic pain, are relentless and exhausting to live with every second of every day.

“Fibromyalgia is not an umbrella diagnosis to appease patients or a term to explain symptoms that are all in your head. It is a real, living, breathing painful experience that we didn’t ask for and wouldn’t wish on our worst enemies.”

Cindy G., Texas, USA

“That there are days that a person doesn’t even have the energy to chat on the phone.”

Colleen E., California, USA

“There’s a host of issues I wish my in-laws would comprehend about how I feel and what I experience. I have explained it over and over. I have stopped responding to ‘Hi, how are you?” because when I started to tell [them] how I really was doing, [their] eyes glazed over, and the next time I’d see [them], [they] had forgotten all about it. If they only truly knew what I felt maybe I would still have a relationship with them.

“Here are a few issues: I only shower every other day because it exhausts me. The active woman who used to help paint and decorate all of your houses doesn’t have the energy to clean my own house all at once. Maybe [I can clean] a toilet here and there and maybe at 2 a.m. because my pain meds kicked in. I cannot overdo it, or I pay the price with days of higher pain levels and exhaustion. The days of having a pristine house and dinner cooked are long gone.

“Try having the flu plus every type of pain – even pain you have never experienced before and can not explain what it feels like. Now go do the laundry, remember to pick up your prescriptions that you keep forgetting, make a meal for your kids and try not to get stressed – either physical or emotional stress – because you do not want the pain coursing through your body, zapping and buzzing and aching. “[I tell myself,] ‘Keep those tears at bay. It’s ok. You got this. Divert your mind.’

“When you finally drift off to sleep, there is no pain until the 1/2 second when your eyes open in the morning, and you say to yourself, ‘Why does the pain flood my body so quickly?’ Then you lay there (or sit there because you now sleep in a recliner), and you run through all the things you were going to do today and realize … maybe tomorrow.”

Cynthia C., The Disabled Diva, California, USA

“While there are many things I wish people knew about fibromyalgia, life would be a little easier for all of us if others understood three very important aspects. The first being that fibromyalgia is unpredictable! I cannot plan around flares that come on without warning. Life with fibromyalgia isn’t, ‘I am flaring today so I should be able to go to the zoo on Thursday.’ We are as clueless as everyone else as to when a flare will strike and how long it will last.

“Secondly, every flare is different. Some flares only affect my body and not my brain. Others attack my brain and not my body. The ratio of nerve, muscle and joint pain, fatigue and other fun symptoms may differ from flare to flare or even throughout a flare.

“And last but not least, nobody with fibromyalgia enjoys having to cancel plans. We would rather be out having fun or working with you! Staying home alone, in pain, and often not even having the ability to concentrate on a television show is not what we consider a good time!”

Deb H., Indiana, USA

“We are living up to the best of our abilities on any given day, and that changes throughout the day. Just because we don’t look like we are in pain and feeling crappy doesn’t matter one bit. We have learned how to fake looking ok.”

Despina M., Ohio, USA

“Fibromyalgia is an expensive disease! Recommended treatments – massage, acupuncture, vitamins, etc. – are not covered by insurance. It is very difficult to work with this disease because of the pain, fatigue, lack of sleep, etc. It is a burden to your family financially speaking. You lose time with your family because this disease robs you of energy, and you need to rest. It gets worse as you get older. There are still not enough research dollars allocated to this disease.”

Donna S., New Jersey, USA

“I don’t choose to be this way! Saying I’m lazy, selfish, attention-seeking or lying hurts to my core, especially coming from doctors who are supposed to be helping me. Screaming and verbally assaulting me because I can’t work as long or as hard as I used to isn’t motivation. In fact, it’s detrimental. Telling me not to talk about my fibro anymore because you’re tired of hearing it isn’t conducive to a trusting relationship.

“I would give anything to be strong and healthy and productive again. Knowing that’s not possible is probably the worst part of all this.”

Elizabeth D., Virginia, USA

“I would like the medical community to know that they are failing all of us. NSAIDS, muscle relaxers, opioids and even drugs approved by the FDA for fibromyalgia do not work. Treating one symptom at a time is also ineffective. Alternative therapies are not covered by insurance.

“Going through life in severe pain, unable to sleep, being very depressed, highly sensitive to loud noises (so many things ‘beep’ unnecessarily) and strong smells, having to cook whole foods because processed foods make the pain much worse but having no energy to do so, gaining 100 pounds and not being able to lose it despite diet and exercise, plus the loss of one’s family and career is more than anyone should have to bear.”

Elizabeth R., Hawaii, USA

“Back in 2007, my life changed forever. I was extremely happy working 60+ hours [a week] as a registered nurse at one of the largest dialysis facilities in the U.S. I had no idea what was happening to my body but all I wanted to do was sleep. That year I took care of my mom (stage III Alzheimer’s) and my dad (multiple problems but was mobile and able to care for my mother). I live in Hawaii and went back to care for them for 4 months.

“Long story short, my dad died, my mom is in a care home and as for me, I lost everything! I spent the first 4 years in bed crying because the pain was so incredibly dull and intense. They kept calling it ‘chronic pain syndrome’ It wasn’t until about 5 years ago that I took the FM/a test via EpicGenetics and scored 89 out of 100.

“My life has not been the same nor will I ever be the person I once was. You lose everything when fibro hits, and it is relentless. Fibromyalgia robs you of the fun everyone else has living. Every day is a question. Can I make it through the day? Can I do the dishes?

“It is by far the worst, debilitating disorder known to mankind. I wouldn’t wish this on my worst enemy. But for now, I just pray and try to keep hope that one day we will all be pain-free! Godspeed a cure!”

Felix R., Oregon, USA

“While fibromyalgia may frequently be comorbid with having experienced trauma and mental health issues, hyper-focusing on that alone diminishes the very real physical impact it has on the body and gives the impression that the biological component isn’t as important. This creates a barrier for sufferers to be taken seriously and to get proper medical treatment by dismissing it as something that is ‘just in our heads’ and can be ‘fixed’ by therapy.”

Florence H., Texas, USA

“People do not understand the HORROR of waking up exhausted, depressed, looking out of the window and realizing the weather is not going to cooperate. The only way to deal with the chronic pain is to stay in bed. I have always been a person who found gratification in helping my patients, cleaning my house, cooking, going to the public library and grocery shopping.

“I have a pain physician who, instead of helping, reduces my medication so that I don’t have enough to last through the month, and the dosage is much smaller, and my pain is worse that when I began the medication. I have other medical problems as well. [Before the dosage of my medication was reduced,] I was able to exercise and to clean my house a little. It may be that he is hampered by those that are controlling the medication because it is a narcotic.”

Geoffrey W., Maryland, USA

“It’s very difficult to accept that you can no longer help others like you want to. I used to always be the guy to say, ‘Here, let me get that,’ and I’ve had to learn to say, ‘Would you mind getting that?'”

Janice E., Canada

“What I would tell others is that I do not choose to be this way. I have never worked harder for myself than I have over the past 20 years. Each and every day I have to listen to my body and work accordingly. I don’t have the gas to go all out, so I pace. Ten minutes on the timer, and then rest. Baby steps. It’s the only way to get things done. I have no stamina, no reserve, to tap into.

“I have a really difficult time dealing with any type of stressor. In hindsight I have now coined this ‘dyscopia.’ I felt like I was trying to put out fires everywhere but they just kept popping up regardless of my effort to extinguish them. Hopeless is how I felt for so many years but now I’m determined to work harder than ever to get back some semblance of life.

“But what I really would like others to know is it’s not my fault, and it’s not my choice to have fibromyalgia but it is totally my choice in how I deal with it.”

Jeanne H., Oregon, USA

“It’s very lonely when you have chronic illnesses others don’t understand.”

Jenny J., North Carolina, USA

“I wish people knew I was playing well – not sick. I wish people knew I had more than a backache. I wish people knew the time and effort it takes to accomplish one tiny task. I wish people could feel it ALL for just a moment.”

Joy C., Australia

“Fibromyalgia is REAL and jolly hard, miserable, frustrating and demoralizing to live with, and people don’t understand because ‘you look ok.’”

Judy N., Ohio, USA

“[I] may look good, have a shower, dressed, makeup on and hair fixed but I hurt like crazy.”

Judy W., California, USA

“Not only am I always physically tired, I’m tired of living with a chronic condition for over 26 years that has in large part not been funded for research. I hope that ‘long covid’ will open eyes and pockets so everyone – particularly doctors – understand that fibromyalgia/ME symptoms are debilitating at worst and life-altering at best.”

Julie F., Idaho, USA

“What most people do daily and take for granted can be a huge hurdle for someone with fibromyalgia. Brushing my teeth is just one of those things. Just holding the toothbrush causes pain and cramping in my hand and arm. I can’t use an electric toothbrush because I am too sensitive to the vibration. I have to have a toothbrush that has the correct angle, is as comfortable as possible to hold and is flexible yet strong. I can estimate my day by how difficult it is to brush my teeth in the morning.”

Kathy L., Pennsylvania, USA

“That it’s absolutely relentless and depressing. It will be 27 years, and I truly believe I’m losing my mind.”

Katie C., Painfully Living, Michigan, USA

“It’s a crapshoot what I will be experiencing each day. When I wake up, often I can tell if I’m going to have a difficult or good day. Waking up feeling exhausted (even after my Fitbit says I slept 7 hours) is a pretty good gauge that it’ll be a lowkey day. Sometimes I wake up from being blissfully unconscious only to find that my body feels like it’s rusted into its position; my joints and muscles have decided to start the day with higher pain (for me 6-7 on the pain scale of 1-10).

But, those glorious days when my pain level is low (2-3) and both my energy and brain function are in working order, I look like any other person. I’m out for a walk, cleaning the house, visiting friends, or working in my yard. These are the times others see me. They don’t see me when I’m at my worst.

The unpredictability is what really defeats me. I have always prided myself to be someone of my word. Yet fibromyalgia has taken that from me. I want others to know this. Don’t assume that because you see me out and about that I’m fine. (I always have pain in nearly every part of my body.) But also, don’t count me out because you think I’m too sick. Include me and then please, give me grace when I have to break my promise-I don’t do it lightly.

Lori W., Canada

“If you know someone with fibromyalgia, ME/CFS and/or Lyme, take some time and read up on it! Ask questions! Tell that person you are there for them! It would still be a difficult life for the person suffering but they would flourish if they knew they had the support of friends and family.

“These chronic illnesses completely change the life you once had. They affect your pain levels, your mood, your emotions, how you deal with stress. They affect your ability to make decisions, the ability to think and to process words. They affect how your digestive system works, your bladder and your ability to regulate your temperature. You cannot get a deep restorative sleep, and your energy levels are rarely at a decent level. They affect your immune system and how you fight bacteria and viruses.

“It is often a living hell that a person wouldn’t wish on their worst enemy. Just LOVE the chronically ill person. Be there for them. Tell them you believe them! Brainstorm with them on how you can still be a part of their life and be willing to accommodate these illnesses that they didn’t ask for! It would make a world of difference.”

Margie R., Arizona

“It hurts ALL the time.”

Mary B., New York, USA

“For years people I loved thought I was exaggerating about how I felt. They said I couldn’t have it because my fibromyalgia wasn’t exactly like another person’s. I was ridiculed and made to feel ashamed while I had done nothing wrong. They don’t understand how you can feel so bad one day and better the next. They don’t understand how eating certain things like nightshades can increase your pain. They don’t understand how stress can exacerbate your pain and fatigue.

“[Fibromyalgia] is an invisible illness. [People] think you’re fine just because you look fine. It’s very heartbreaking to be wanting help, and you are thought to be wanting attention, or worse, a hypochondriac.”

Melanie C., Ohio, USA

“You’re tired all the time. You hurt all the time. Your extremities feel like they are always asleep. Your energy level changes hour to hour. If you do too much in a day, you have robbed the next three days of their energy.

“People truly a.) don’t believe you b.) politely don’t believe you or c.) just don’t get it. I pray they never get it the way I do.”

Molly A, Washington, USA

“Fibromyalgia is an individual disease, and what works for one might not work for another. It takes a lot of grace and patience and most of all acceptance.”

Patricia, Colorado, USA

“My pain is real.”

Paula S., United Kingdom

“We are all totally unique. Every sufferer has different symptoms, and you are in no way in control of anything. Just because they can’t see it doesn’t mean it doesn’t exist or that it makes it less of a very painful and debilitating condition. Hour by hour, the sensation and pain change and so does your ability to do things. Just because you started to do something doesn’t always mean you will be able to continue and finish it straight away.

“We are not faking it. We really are made to feel like second rate citizens that don’t really count. We are [not] hypochondriacs that moan for the fun of it. We have a genuine want to live our lives as best we can but this illness does impact on every part of our daily living. We do not want sympathy – just recognition of the condition and to be taken seriously

“It’s a very lonely condition if those around you don’t fully understand and appreciate the daily struggling and changing aspect the illness brings. Just because you look fine doesn’t mean you are, and the things you can do today can have long-reaching consequences for the next few days and weeks on your body and cause more pain. Over time it does continue to get worse the longer you have it, and it seems to get more of a hold of your mind and body, and you become totally absorbed by it. You can’t fight or change it but have to constantly change your own attitude to accommodate it while at the same time never giving up and never giving in to it. [We] try and fight every single day to live with it and try to have some semblance of a life.”

Rochelle R., Canada

“I want people to know that people living with fibromyalgia are not necessarily lazy, and that most of us do the best we can each day based on how we are feeling. I also want them to know that we are not unreliable by choice. It upsets me very much when I have to cancel plans because I’m not feeling well enough to do what I had intended for the day.

“Finally, I would want them to understand that if they truly want to help, they should ask us how they can help or just surprise us and do something that would help us in someway, whether that be asking if we need anything when they go out grocery shopping or asking how we’re doing in terms of making meals, etc. I live alone, and I really have no one to help me, and it would mean so much to me if friends wanted to and were able to help out a bit.”

Sue S., New York, USA

“I would like people to know that just because my body can’t do all that I want, my mind never stops. I want to be relevant and have the opportunity to give all that I am able.”

Tanya F., Pennsylvania, USA

“What I would like others to know about living with fibromyalgia is everyone has it to differing degrees. One person may be able to work full time and another may barely be able to leave the house. Fibromyalgia also can differ from day to day. What you’re able to do one day, you might not be able to do the next.

“Treatments can differ from person to person. Just because it worked for one person does not mean it will work for another. Fatigue can be the most dominant symptom and the hardest to deal with. It can be unrelenting at times. I have times where I’m mostly on the couch resting or can’t leave my house for weeks at a time.

“People with fibromyalgia are not lazy. They are trying to do the best they can with an unpredictable illness that is daily.”

Teresa L, North Carolina, USA

“Taking a nap doesn’t cure fibromyalgia.”

Vicki, Pennsylvania, USA

“That I am not lazy. So many days I have had to cancel appointments because the pain was so bad I could not even get out of bed. These days I spend a majority of my time at home because I am safe and more comfortable there. I have not withdrawn from society.”