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Readers Respond: Making Sense of Fibromyalgia

Responses: 139

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Updated September 14, 2009

It's always a challenge explaining fibromyalgia to the people around us. Get ideas from other people with the condition so you have a better handle on explaining fibromyalgia and share the explanations that have (or haven't) worked for you. How Do You Explain It?

lost

I was recently diagnosed with Fm but I've had the symptoms it seems like forever. one day I seem fine then the nxt I feel almost paralyzed with pain. Today I woke up and I hurt from the left side of my jaw all the way to my calf area. I feel like I've been beaten& burned. I was prescribed lyrica but it makes me feel like a zombies and I Hv to work. I don't know what to do. I'm about to have to stop working. I just wish something helped.
—Guest steph

When clothes hurt you...

Yes my clothes hurt when I have a flare-up day...so I have to wear really stretchy loose clothing. The pain is from my eyes and all the way down to my burning feet! And people do have trouble understanding how this disease called fibromyalgia could hurt so much...when I look so healthy!
—Guest cindy weigandt

guys with FM

I'm a male athlete with FM. Migraines and IBs. Cervical migraines came after 3 back surgeries a couple years ago. But the brain fog, unsteady gait and a host of other symptoms told me something else was wrong. apparently this is my new life.
—Guest ET

all of it

i have not been diagnosed, my 25 year quest for answers has finally led me here. I am overjoyed with my chest pains , the first acual major physical pain ive had, thought it was a heart attack, and google led me here...i added up my cfs/glandular fever, and now i know, this is it. i feel almost happy that i am not making it up. have felt guilty, like a victim, a complainer, a loser for sooooo long. xxx so happy/sad/ xxxx
—Guest me

Erin

Luckily I don't have Fibro, but i do have a very rare condition called Mononeuritis Multiplex. It's very similar in the way of the pain, but with this it's my body attacking my nerves. My nerves hurt, with sharp shooting pain, and constant aches. And randomly my nerves won't talk to my muscles, which makes me unable to walk, or use my limbs. I appreciate this forum, it's helped me to put my pain into words! Strength and prayers to everyone struggling!
—Guest Erin

I usually use a term others understand

When people ask me what is wrong with me I often say "arthritis". I do suffer from arthritis in addition to fibromyalgia but the fibromyalgia is far worse I think. The reason I say arthritis is because most people understand arthritis and they likely know someone who has it so they can empathize. Most people (including many doctors) don't know anything about fibromyalgia and many think fibromyalgia suffered are hypochondriacs. Movies like "Identity Thief" that make fun of the condition do not help us overcome what is already a difficult illness to explain.
—Rapunzuhl

Nightmare!!

I was diagnosed with fm and CFS 4 years ago, prior to that I had worked full-time and my job was physically demanding. Now I can barely do anything - this condition is a living nightmare. I wake every morning either feeling like I've been beaten by a baseball bat (all over) or I've been hit by a train, my jaw is constantly clenched, my ribs hurt when I breathe and I view my staircase as 'the enemy' as I have to drag myself up them by pulling on the bannister so by the time I reach the top I am breathless and of course my legs plus my arms are burning from lactic acid. Before now I have tried to describe what fm feels like, but as every sufferer knows - its impossible!! I do occasionally say that 'to me it feels like I have been poisoned, and the toxins are in every part of my body'. Not sure that covers it though. I have family and friends who are supportive but I hate that 'everyone has to consider me!!' "Oh shall we go there?" "Oh we can't because of your fibro".
—Guest Bev

I am lucky

Reading all the comments helps me understand how lucky I am, even though I deal with this beast. I feel like no one can fully understand what this is like, but I can say that both my husband and my daughter both care very much about how I feel and try their best to help me. I do feel incredibly guilty sometimes but that comes from inside me, not from either of them. I feel so sad for the people whose friends and family malign them or leave them completely (that might be better or worse depending on your perspective). I KNOW my husband would NEVER leave me because I am sick and I would never leave him because of that either. I pray for a cure someday.
—Guest Sonya

living with FM

Unable to lay in bed due to pain from pressure from whichever side is touching the bed and numbness from the side which is not. Get up feeling exhausted from lack of rest, take meds, wait for hours to mentally prepare myself for another painful guilt riddened day. Push myself to go to work & do as many chores as i can. Take more meds. Continue to work through the agony. Take more meds. Come home, get as many chores done in my home. Take meds. Rest, prepare dinner, rest. Bath, bed & do it all again tomorrow. Try to keep positive and try not to think about ending all this torture. I took the difficult decision to tell my husband that I often contemplate suicide as I feel that there is no way out of this terrible condition. Thankfully I have his support and understanding & a very good GP who understands FM & is working closely with me to ensure I get the best care & medication. I believe symtoms of FM won't kill you but without the right care the sufferer of FM may decide to.
—Guest mmarkey

What's in a name?

A lot of judgement is in a name. Be honest, you know that judgement comes with certain types of illnesses. We may as well be drunken pirates with exotic forms of VD or be admitted heroin addicts for all the empathy we can expect to get. People nod & say yes I've heard of your made-up illness & you have just confirmed to me that you are a faker, a liar, & probably bat-s@#t crazy. It's funny because people who know seem to always expect me to be better & my doctors too seem to expect more from me. Yes, clearly I just don't try hard enough to cure myself. That's right, too lazy to come up with my own cure, whatever, I'm going back to bed. I don't try to explain anymore. I tell people who ask, "FUBAR" and if further explanation is necessary, "like hell, how are you?". It's insane that so many of us are afflicted in such a critical manner and there are not more resources to address it. Explain it by switching on any zombie movie, point to the first zombie you see and tell people "like that"
—Guest Cayce

no one really believes. i am ill

Tired of trying to expain how today my back and shoulder hurts and shopping exhausts me but yesterday i could walk the dogs for an hour. When i was diagnosed a year ago i had had every test in the book for over ten years my family thought i was suffering from attention seeking after my marriage breakdown even now i am frowned upon when i say no! I am dealing with this day by day but its tough going.
—Guest jazz

This is my hell

I was diagnosed with fibro 5yrs ago. I have been living with secondary progressive M.S.for 12 , multiple neck and back injuries. I had a handle on all until fibro strolled into my life. I have no down time from the constant all consuming widespread pain that ranges from a light touch, the feel of water from shower on my skin to the deep to the bone aching pain that never subsides it is consitant 24/7. The fatigue I feel is so consuming that my impluse is to stay cruledup in bed forever. Brainfogs are a regular visitor. I have given as many explaninations as possible about my ilness and limitations. Explained the result of sress on my health. Well since I do not appear to look ill it was very hard for family and friends to really understand the gravity of the illnesses and changes in my life. I was forced to break from all completely. It was thier collective thinking that I had brought this upon myself so l just needed to fix it. I am in a live sentence to h ell on earth.
—Guest weird one

How I stumble thru each day...

My Fibromyalgia has been around londer than my diagnosis has. I can remember the pins and needles all over and no concentration and tired alot back from when I was younger after having removal of some reproductive organs at age 13. It got worse after the surgical delivery of my son. I noticed the wanting to sleep alot because the pain all over hurt so back that I didnt know how to discribe it to anyone. I try to get my hubby and mom and brother to understand more about it but they dont want to hear it. They dont like the fact that something is wrong with. Hubby understands son which is better than none but I would do ANYTHING to go just 1 day--1day! w/o pain. Confusion sucks, as well as memory loss, fear of walking to much to where you cant move the next day, or the day after that ot the next. You never know when, where, or how the flare will pop up next. Please pray for all the suffers dealing with invisible illness. Just you cant see dont mean they're not there. Be gentle to peoples!
—Guest sickofFibro

Thank you!

I have just been diagnosed with fibro. I have had it for years! I experience what the other respondents have shared.i feel like I am a living dead..a zombie in complete body pain, pure exhaustion, bowel and bladder complaints...I hurt all over and barely can clean the house...let alone trying to embrace life......what a horrendous disorder. It is insidious and cruel. On those good days which are rare for me, I have a glimpse of normality. All I want to do is curl up in a ball to sleep, but sleep evades me.My eyeballs and jaw throb so badly now, my arms ache and my finger throb as I type this!
—Guest Rose

To me,Fibro feels like.....

When you tried to stay awake more than 24 hrs and got super sleepy...I feel like that 24/7...Or when you had that really bad cold or flu and felt like someone was beating you all over with a bat all day...I feel like that 24/7...Or when your fingers,hands,or toes would get sooo cold,you could barely bend your fingers,and they'd ache and hurt so bad til they got warm again....Mine feel like that 24/7...Or when you got sand in your eyes,and they felt scratchy or a bit dry or itchy or burning...Mine feel like that a lot...Or when TV would go off the air,and you'd see the "snowy" screen and hear the white noise...I hear the white noise in my head 24/7...Or how very sore your muscles felt when you badly sprained or pulled them...Mine feel like 24/7...Or when you had that really bad sunburn that hurt to touch...My skin feels like that many days...This is how my Fibro world feels every day,everything rolled into one...I hope you NEVER have to hurt the way I do every single day of my life...
—Guest Pam

How Do You Explain It?

Making Sense of Fibromyalgia

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