Have you ever had someone ask, “Fibro what?” when you told them what you have? Most people have never heard of it and for sure have no idea what it is. How on earth are we to help them understand? What is fibromyalgia?
The word “fibromyalgia” comes from the Latin term for fibrous tissue (fibro) and the Greek terms for muscle (myo) and pain (algia), according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Although it differs from arthritis, it is considered a rheumatic condition, which is why most people are diagnosed by a rheumatologist. That might be a good way to describe what you have: constant pain in the tissues and muscles but not in the joints.
Educating others is the only way to ensure that our illness will get the proper exposure and medical attention that it deserves. Post occasionally about your struggles on social media, not in a complaining way, just in a more informative way. Hopefully, that will encourage some dialogue and get people asking you questions.
Help people to relate it to everyday life. For example, if someone’s ever been in an accident they’ll remember how the next day everything hurt, even parts of their body they never pay much attention to. That’s kind of what our pain feels like every day — sometimes worse and sometimes not so bad.
Another example would be reminding them how incredibly achy and painful they feel when they have the flu. Let them know that’s how we always feel. Even though they know that in a week or so they’ll feel better, it never goes away for us. If we can help them relate our symptoms to an everyday occurrence for normal people, I think it will go a long way to helping them to better understand fibromyalgia.
My immediate family gets it for the most part, and my husband truly gets it. But friends and acquaintances don’t, really. They still say things like they hope I’m better now, or mention how their boyfriend’s sister’s teacher had this and they’re doing fine now. Sheesh. Do you have people in your life who understand — at least as well as they can when they’re not chronically ill?
How do you explain FM to people you know? Do they look at you like you’re from another planet? As always, I look forward to hearing from you!
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
I do not even try…they just go online and read and believe whatever they want to believe. Fibromyalgia is just all in our minds…in a funk and I already know I am from and live on another planet…Fibro-Planet that does not even exist…yes, being sarcastic and cynical. Ashamed to even be a part of what is called the human race…Bad day y’all.
Em, I’m sorry you’re having a bad day ? Sending you many soft hugs!
Em,
Hugs! I totally hear you, and have similar bad days way too often!
Hey we all have bad days and mayhap there are others that have heard much the same…dadgum, I do not have a history of being lazy!!! I truly am okay…blame things on fibro and my artistic temperament. How about Lyme, DDD of the spine, OA, treatment resistant depression, PTSD-MERCY!!! How is it I still allowed to live on my own???
All in all, I am still far more fortunate than many and I am not being cynical with these words.
Hi Robin, Thank you for your thoughts.I really enjoy your posts, and look forward to them.I think the “flu” analogy is the closest I can come to explaining our illness to someone who is interested in knowing about our illness.They are few, and far between.It helps, so much, to have the support and understanding of our fellow spoonies.Take care. And again,thank you for your support!!
Cheryl, I’m so glad you’re a part of our community here. I’m honored that you look forward to my posts ?
I never thought to explain it like flu symptoms that never go away, great analogy. I struggle with pain daily, I have no idea if I actually really have fibromyalgia, my gp thinks that I have fibro, and treats me and my symptoms as I have. The Rheumalogist I saw first said it was just my arthritis and prescribed me co-codamol. Then I was referred to another hospital as I was getting nowhere and was tested for MS, polymyalgia, inflammation etc. My inflammation levels are generally ok, all other blood tests within normal ranges. I have so much pain daily and take so many pain killers to just get through the day. When I get home from work I just feel so exhausted and fall asleep in the arm chair. I just want to know what I have and how to deal with it.
Jayne perhaps you could search for a different rheumatologist in your area. I’m very sorry for your suffering
Jayne, before I went to a Rheumalogist I knew the symptoms of Fibro and the Rheumalogist confirmed it. You need to
search for a new Rheumatologist. In our area the Rheumalogist does not handle fibro cases but refers them to your primary care physician. Naturally, I was disappointed because I do not expect my gp to know everything about fibro, particularly medication to take” So I did lots of reading on the “net” and went to my gp saying “Let’s try these meds”. Trial and error you will find a combination of meds. that will help alleviate some of the pain but not all pain. We all have to learn to live with pain but you can reduce the pain through appropriate meds.
My children think I’m crazy. It’s very hurtful. I get come ts like”Mom you should not be taking all those drugs” and ” there is no proof that fibromyalgia actually exsists”
Joan, I’m so sorry! The best you can do is educate them
Yes I have same problem,I think that some people are ignorant and OK perhaps they dont want to accept a parent”getting older” but young people can have this problem also.
I have also arthritis in my ankle plus rotator cuff problems which do prevent me from doing some the things that I could do unaided few years back. However, I do try my best, but sometimes my best is not good enough for others
I’m new to this diagnosis, even though I actually had it as a child and it was just called “growing pains.” Anyway, I think I have the opposite problem…I have too many “experts” telling me what to do and how to do it because someone’s sister’s husband’s mother has it. Or, I have people trying to compare their achy knee after running to my FM. And this last example is really hard for me as I am faced with the prospect of no longer running because of FM, even though running has been a major part of my identity for a long time.
I guess I haven’t found a balance yet of when to talk about it and with whom and when to keep my mouth shut. Glad to have found this website because I have lots of questions!
In answer to the question posed in the article though, I don’t know how to explain it to people. I’m still in denial half the time, so I don’t know how to explain it to myself yet.
Chris, I’m sorry you’ve got Fibro! Glad you found us and we’d be happy to answer any questions 😊
Dear Robin, thanks for this today. My past 6 months have been horrific! I literally have experienced every symptom listed anywhere, and some my doctor hasn’t heard of. I have so many twitches and shakes my one sister thinks I have Parkinson’s, my fog is so bad my other sister thinks Dementia! But for me the worst has been my incredibly sore feet. I no longer have shoes I can wear, or socks, and barefoot doesn’t work either. My feet just burn like fire, sometimes so badly the skin comes off! Still people think I’m needy, lazy, over-reacting. I want to tell them, share how terrible it is, but that I still laugh and love seeing friends, but no one really cares, or wants to hear. They want to hear that I’m better!
Marita, I think it’s because they care that they just want us to be better, plus they may not know how to deal with us. I’m so sorry for your suffering
Thanks so much Robin.
💜
I have posted this before but This is a poem I wrote to help my family and those closest to me to understand how I fill. I hope it can help others if they fill the same.My pain is under control for the most part, it is the Fog that has me down so much of the time.
My New Constant Companion
My eyes are drooping with weariness,
My mind feels muddled like a piece of mint at the bottom of a drink,
My arms and legs are heavy and slow to move.
The love of my life cheerfully makes me dinner after working all day (I fret because I know this is what I should be doing for him). I finish my meal hoping just to keep it down.
It’s evening,when my fog is the worst. My words mix together like a new color I’m trying to make but always come out looking muddy! My love and I laugh and keep a sense of humor…what else can we do?
My pain comes and goes. It’s like being in a storm and sometimes the lightning strikes and it is pain all over! The storm goes away but it will be back.
Lights can be too bright and hurts my eyes. Normal sounds sound too loud in my head. My own voice sounds too loud in my head,but my love tells me to speak up, because I am mumbling.
This is my new constant companion called Fibromyalgia. However fret not for me, for all Fibromyalgia gives and takes from me, God has blessed me with so much more!
I still get a thrill when I see my husband. He is the love of my life and always tells me that I am his. Most of all he shows me! I still feel like a kid when I see a rainbow! I paint and sculpt and play with color! God blessed me with so much!
Most of all God gave me the greatest gift, the gift of love. First He gave his son. Then he gave me Ty, my two sons Jon and Beau! God gave me family and friends who love me. Fibromyalgia you can’t take that away!
God I pray I learn from this wicked Fibromyalgia, so I can glorify you with my lessons I learn.
Fibromyalgia you have given and taken much from me, but you are not me! I am a beautiful child of God and I thank Him for making me, me.
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Beautifully said Kimberly!!
You know I have stopped trying to explain. My husband understands and is very supportive. I have a good Doctor. I do my best that’s all I can do.
Try to keep it simple when you can. Do your best and be yourself. You don’t have to explain. Just take deep breaths and be who you are.
God bless you!
Kudos Kimberly!!
The flu analogy hits it pretty much on the head. If I don’t take pain meds it really hits. Does anyone get an intense pain in like the knee and it gives out? It has happen on and off yet there’s nothing wrong with my knees…via xray. Then there’s the shoulder when I couldn’t lift a 2 yr old grand daughter unless I went down 2 steps to the basement then she was on the right level. Now I can’t lift her son for fear my arms will give out but not shoulder pain like before. Fibro hops all over the place. Marita, I get how your feet hurt. I could hardly walk years ago, and one of the first intense pains I had was in my hands just trying to go thru my purse. Now they’re numb and tingly. I also have been dx with severe carpal tunnel but don’t want surgery. Has your Dr considered Neuropathy? My Dr. has been great…she researches Fibro. but my kids say she’s too heavy on the drugs. which I’m glad of. Bless her heart, there’s nothing else to do. Gabapentin doesn’t work, nor Ultram, nor others we’ve tried. For fatigue I take Provogil which is generic now but I have taken Nuvigil which is pricey, from the same co., btw. I would take 1/4 tablet but take a whole one of generic Provigil and it hardly works at all. Yet, to sleep anywhere near well at night I take 1/2 generic Ambien. Benedryl will help but it’s a restless sleep. Don’t mean to repeat but has anyone been tested for Epstein Barr virus which is active in me now but usually dormant. It causes fatigue. I’ve wondered if it and Fibro are connected. Most do not know I have anything wrong except family and some who have Fibro or Chronic fatigue too. I don’t mention it. People have said…you need to exercise….and one lady treats her Fibro with diet and the treadmil because pills cause her trouble. We all endure one way or another but enduring is the name of the game.
Hi Mary Ann,
Yes, I have had the knee that gives out. After many years of panic, I now use a stick when I’m out.
I had ME about 25 years ago, which improved with the Candida diet.
In my tiny support group we are all of a mind to come of the drugs. The girl who has come off everything has had no change in her symptoms. Doctors and meds are so expensive, and so far have only made my symptoms worse! Our group and understanding friends have agreed to treat ourselves and each other with kindness, lots of laughter, and as few meds as we can manage.
Please understand that I am not recommending this for you. I just wanted to share about the knee. And yes, I have read that there can be an Epstein-Barre connection.
I just had a really bad day… I actually have been trying to keep my diagnosis from my coworkers. I know what they think of fibro already. It’s not good. And they are healthcare workers. I’ve used the flu analogy with friends. It works. They didn’t get the reduced tolerance to stressful situations though. So I tried telling them this. You know how people who never swear actually swear when they stub their toe or how someone you startle almost took a swing at you, that’s the fight or flight reflex kicking in… Now imagine either of those two scenarios happening over and over again. For me, it’s mind over matter. I’m trying to constantly suppress the panic from that fight or flight response that comes with pain or fear. I do well most of the time. But sometimes the pain gets so bad that my reserve of “patience” or “tolerance” runs out. It may not take much to provoke tears or anger. People who care get it. Others just think I’m crazy….
Clara, just ignore the naysayers…they’ll never get it. Soldier on and keep a small circle of family and friends around you that you know you can vent to
Not at all being critical…a long while ago you wrote an open letter to family and friends which I did share. Regret having done so as I have been excluded from all family functions because I am feeling sorry for myself and making excuses.
Not your fault.
Join the crowd
Im 48, and started with it about six years ago. At first I thought it was tendinitis (as I have that), since the first attacks were close to the top of my arms. I was finally diagnosed about a year ago; the attacks have become more frequent and last much longer now. This one has been in full swing for five weeks and I keep getting tearful. Sick of the pain now…
There is a woman in my town in an elec wheelchair and she is only young. I overheard her saying the reason she’s in the chair is fibro. I was horrified! I had no idea it could get that bad and now I feel a sense of dred for my future.
I know that it doesn’t get that bad for everyone, it just scared me. There is no support group anywhere within reach of my town, and I have noone who drives in my life. Online support is not really helping much. My partner is very supportive, but he doesnt really grasp how bad it gets… he looks puzzled when Im crying in pain.
Want to wear t shirts that spell it out for everyone… maybe that way I might get a seat at the bus stop when Im in agony?? lol
Invisible illnesses don’t get you a seat on the bus! I look fine. No point using a stick, as it hurts my arms too much to use it…
Sigh.. sorry just needed to get it out. Big hugs to you all xxx
Shadow, I know it’s hard not to project what our future might look like, but this disease is best taken one day at a time. The only thing that currently helps me with my pain is CBD oil