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Readers Respond: Making Sense of Fibromyalgia

Responses: 118

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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?

I feel like a crazy person

I will never forget the day I discovered I had fibromialgia. That was the day I was crippled from the neck down in seaver pain. I could not walk or move my arms and no matter how much meds the doctors gave me it wouldn't take my pain away. This is when they realized what was wrong. I was 30 years old and told that I have a problem that no one understands. I have tryed to explain what this is like to others but I just feel like I'm a cry baby looking for some sympathy. So I go about my day and say nothing and live in my pain. Everyone thinks I am fine because I walk fine or look fine but they have no idea the pain I'm in or how when I come home from work my body and mind are drained. I have tryed so many things to help with the pain but nothing worked until I found out that surtten foods can have an affect. Someone told me that gluten has an affect on fibro. So I thought I'm not going to like this but I figured why not! Well let me just say it helped me so much. My pain is managable!
—Guest Michelle

Screaming in silence

Reading all these responses made me realize that I am not alone. Does that make me feel better? not at all. Why? because I wish that I didn't feel so alone in my own house. I know that my husband and kids love me, they just don't understand my illness, and that is so frustrating. I know they are used to me doing everything in the house and they are still waiting for me to go behind them and pick up the mess, but guess what? Im not behind you. I was such an active person before I got sick. Now, I feel helpless and hopeless. I am sick and tired of people telling me if I had a better attitude I would feel better or if I was positive I might get better. I AM SICK! IT IS NOT GOING AWAY!
—Guest Liz

Everyone Living Life Around Me

I've been living in pain for the last three years, and I have given up explaining a disease thats unexplainable. At first my family was very compasionate, now after living in my hell for all this time, they just live their lives around me like I barely exist. My fiance used to be very loving and thoughtful, now he just works all the time, barely noticing me or wanting to even spend time with me, all I feel from him now is distance. My oldest son who comes to visit pokes fun at me, smiles and laughs when I'm feeling bad, I ask him why is he so mean his response is: It's fun. My oldest daughter just had a baby so her life is consumed by being a new mom. My youngest son who is 6 years old, talks back to me when I say I don't feel well, he says I know pain, pain, pain thats all you ever say. My family has grown away from me, not understanding what has happened to their mom. Now I live in darkness and pain, wanting to just to be free from this disease.
—Guest cheril

Worse than labor

With my first child I was induced. It was a miserable child birth. 20 hours of hell. The only thing That kept me going was KNOWING it would be over soon! Either I was going to push her out or they would cut her out! One way or another, it would be over soon and I'd get back to normal. I wish there was an end of the pain to look forward to! I really dont want to live my life miserable! Unfortunately with the FM comes UTI's and for me with UTI's comes kidney infections due to Kidney reflux. Wich becomes just another pain. I have also developed a pain killer intolerance! They make me vomit every time! I don't know what to do to get relief!
—Guest Jessica

Living with Fibro n CFS

Living with Fibro is dwelling in d hell.Added to it, Chronic fatigue syndrome which makes us feel that we r in hell extension.Lack of awareness about d condition makes us feel worse.They feel that all this is in our head but not what we really face.People have soft corner for cancers etc but do not even try to understand or co-operate with us.My marriage got dissolved 'cos my body couldnot co-operate with him.we r living dead not knowing when we r sick n when we r OK.Every inch aches. wish i take a big microphone n shout 2 make everybody in d world hear about fibro CFS
—Guest Nalini

Pain and lonliness

The pain is like being tortured 24/7,it never lets up.Never.My family treated me like I was a mental case,hurting my heart over and over until it had me so depressed and so stressed out I finally had to cut all ties.I have no friends anymore because they couldn't understand why I couldn't work and keep up.My fibro is the results from a stroke I had 24 years ago.I'm 54 now and I feel 80.There have been so many times I wished someone-anyone would take the time to sit with me,just make a sandwich for me when I'm unable to remember how.It's traumatic having to ride the bus to go anywhere.Most of the time everything looks foreign to me,just everyday things.The loniness haunts me.I cry often for companionship,just a kind word.I'm so afraid for my life.
—Guest Guest Amanda

Where can I rest

I live In a moble Home,wich Is hard to heat so i burn alot of wood,Lp furnace also.Winter is freezing and uneventful,getting dressed to go out is enough work to get undressed and stay home..Spring Is wet and cold so your old bones hurt ,esp,the ones i broke.Have 7 acers out here in central mn ..Freinds how can you have friends,friends do things together drs wont give you enough pain meds to kill the pain all day .take trazadone to sleep best part of my day is Bedtime and thats without a woman..Of course you have to take magnesium so you can shit the next day.better not be anyone in the way or you need a bucket in your bedroom..Im ready to become a junkie to feel good ,qwit drinking ten yrs ago this october don;t get along much in AA cause not happy,no unhappy non drinkers.In fact thats pretty much everywhere,church,your faking your happiness most alwase..A lot of that came from Chantix took it for five days in feb.08.And my clonazepam qwit working instant anxiety VA new better,
—LowellNorby

Gumtion Oh the Gumtion

Born and raised in Santa Barbara, together with my ex-husband for 20+ yrs. married lucky 15 of them. While i was in bed had what i believed to be the worst migraine ever with pneumonia in physical undiagnosed at the time Fibro -pain. Already had bulged discs, a prior broken neck in track on the hgh jump, and spinal arthritis. Not to mention many other accidents. including a twisted whiplash hit at est 70 mph by a van our little nissan sent into the center divider at a standstill to avoid slamming into the car ahead of us during fwy construction my husband sat on the end of the bed and said, I" am sick and tired of taking care of a sick wife!" When in fact emotionally , physically he was NOT and that he felt he was jsut a workhorse." left me for my next door neighbor friend then married her for her greencard. prensntly my fibromialgia at age 47 is advanced. W/very high chronic fatigue, numb lips. Knotted pain so much the myofacial tissue,tendons &muscles move the tendon off my hip.
—lifes2good

25 going on 80

I was diagnosed 5 years ago and after going through hormone treatment for stage 4 endometrosis its gotten 1000x worse. It is the monster chaining me to my bed the ever present shadow waiting to attack. My own husband doesn't understand I have good days-3 or 4 hours of relatively pain free existance and then I'm done the shadow returns. Other days I'm stuck in bed but I struggle through taking care of my chores being a stay at home wife I have some freedom but I do find people just think I'm a hypochondriac faker and a whole litany of other things. Sometimes I feel like I would rather die than go on with this pain it never ends feels like the worst case of flu I ever had that never ends. I'm alone fighting this horrible disease.
—Guest Beth

Does anyone hear or believe me?

I've spent years thinking I was crazy. From age 3 I can remember pain. I started getting migraines at that age and when I would tell Drs how much pain I had they would ignore me, tell my mother that it's the migraines or growing pains and being so young I couldn't express myself better. As I grew older the fatigue was horrible, I'd come homefrom school and sleep until the next day. The Drs then would tell my mom my fatigue is from migrain auras or that I needed to be more active. No one listened to me all my life about this horrible pain that haunts me. Finally 10 years ago my mom gets diagnosed with fibro and she starts putting the pieces together that what I've been saying as a child was real. Finally my diagnose came in 2010 but to no relief. My liver is fatty and has lessions from all the damn pain medications I tried so I can't even take a Tylenol. My life has been a living hell and I feel as a burden to my family. Kids don't understand mommy doesn't feel good again.
—Guest Birm

Excrutiating Pain

Pain like I've never felt before in my worst nightmare. A pain so intense that childbirth may come a close opponent. No one understands as you wear a mask, not by choice of course. But a mask from the sheer fact you don't look as bad as you feel. Pain from various foods. Pain from medicine sensitivities. Our bodies are toxic waste pools disrupted by the convenience of life. I have found if I inconvenience myself, and provide organic and pesticide free meals, I have lessened the flare ups to about null. I've begun a blog to share my experience: www.yourfibrosupport.com There I will transcribe all my research in future months and share my knowledge with all for free. I've found little relief with medicine. Rather, my symptoms flare more due to intolerance when my medication is out of my system. There are natural alternatives. And, if you've been to the ER due to pain, you'll try anything to ensure it doesn't happen again. Join me on my journey and posts your comments!
—abjv

Being a victim of the inquisition...

Except you're still alive. The pain coming from an invisible torturer screaming for answers that you wish you had. The only relief I feel comes when I fall asleep and just before I truly wake up. My mind thinks it can do all the things it used to but my body seems to disagree and usually ends up winning the argument. "just stay positive and patient" they all say with a smile and I try, I really do. I smile when I want to cry, I speak softly when I want to scream, and I do my best to stay positive and to ignore all the anger, frustration, and disappointment that comes with having this disease. "Somedays are harder than others" I tell everyone hoping they will someday understand and remembering to stay strong for my kids and family. I'm saving this amazing article. I'm going to do my best to memorize the answers to the questions I get all the time because telling people that it's like the worst flu you've ever had doesn't seem to work.
—Guest Aimee

I am a Mermaid

I am elated to have legs; until the pain takes over. I dive into a fishbowl and feel refreshed; but I lose my connection to the voices and touch of the people who love me. I feel removed and isolated. Sometimes someone shakes the bowl, and I tossed against the coral and flung in the air - the air tears into my lungs and presses against my skin - I jump to the land for relief; sometimes met by a sandpaper shore and a baking sun - my legs grow back...so I can rejoice in the dancing or crawl back to the bowl...
—Guest Icle

shel

Other than saying that I often feel like I've been hit by a truck, I tell most people that it's just "the Hypochondriac's Disease." Some people, like my daughter (a nurse studying for her Master's Degree) and my husband (who has his BA) refuse to accept the diagnosis, or compare me to well-trained athletes with Fibro that eat bananna & peanut butter sandwiches on days they don't feel well and are able to perform astoundingly well. Yeah, right. I tried it for about a month & I still had some flair-ups that were doozies. I am very lucky that the non-profit I work at is very flexible, but then I have been a Program Director here for about 9 years and can pretty much set my own schedule. I have had to correct so many embarassing mistakes and have lost grants because of them. There are a lot of days that I really wish I could afford to just quit and go on Disability, but my husband & I are not in any position to give up what I earn. My husband just ignores me when I have a flair-up.
—Guest mlucas2

Ache and {Pain just the tip

Im just had to laugh.I didnt know that what I have been dealing with since my teen years is a condition.I felt alone and misunderstood,so while reading the comments I had to laugh at some of the storys, it felt so good to know someone understands and knows what I go through.It is good to know I dont suffer alone.
—Guest tth

How Do You Explain It?

Making Sense of Fibromyalgia

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