From the article: What's Going On? A Simple Explanation of Fibromyalgia
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?
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
My Fibro Reality
- I have had Fibro for several years now, and feel like it has taken over my body completely! People tell me that I need exercise that'll toughen you up they say, I am told I am lazy, well let me tell you I am down because I have no choice! I am not looking for sympathy nor do I have mental health issues! I am held prisoner by an invisable invader who shows no mercy! In addition to pain, I have stomache issues, neuropathy and several other issues that have forced me to become isolated.. There are days when I really feel I can't spend the rest of my life existing.... I want to participate in my life and do the things I once did..... Just because you can't see my illness doesn't mean I don't have one...
- —Guest Mary
Keep soldering on
- I have been diagnosed with Fibro for 6 years now after giving birth to my son. I tend not to tell people and try to keep positive, but like most people here just the thought of getting out of bed and trying to struggle through the day is overwhelming. However, I have not learnt to pace myself and do not help myself by constantly working, looking after my son, jobs around the house etc. I have a "PainGone" pen which is really helpful with pain, and have tried Hypnotherapy at a support group which I attend and this has helped. There is something new out called Zivadol which I found out about on the FibromyalgiaUK website. It is a natural drug/tablet with Zinc and FalxSeed Oil which we lack when we have Fibro. My advice is listen to your body (I should listen to my own advice!). It is daunting knowing that we have this horrible illness that is never going to go away, but try to enjoy your life as much as you can. Soft hugs to all of you suffering!
- —Guest Amanda
Pray husband will read
- Husband has been my angel for the most part. Now he is worn out I think. Also understands only half of Fibro, saying I make it worse by not sleeping (he thinks it is a choice) or not eating (nausea) ..mistaking symptoms for my lack of care. I am not mad at him, I have it and even I don't understand it completely.
- —Guest piper30
I just can't take it anymore!
- I have been dealing with the constant pain for years. I was recently diagnosed with fibro. I have yet to find a doctor to help me manage my pain, weakness, and fatigue. It is so frustrating. I feel like I am cheating my daughter of the mother she deserves because I can't do all the things I want to do with her. Some days I don't want to get out of bed but force myself to for her. No one understand what I am feeling and when I try to explain my pains and frustrations to someone, they act like it's not that big of a deal, like its all in my head. Not having someone close to me understand or believe how badly I truly do feel everyday makes it so much harder. I wish I could feel better to be the mother, friend, girlfriend, and family member I know I can be. This disease is ruining my life. Even on my "good" days I don't want to go anywhere or do anything.. I dont feel comfortable with doing things I used 2 love such as hanging out with friends.I am not sure what to do anymore.
- —Guest Nikki
How does Fibro feel?
- Like I'm a Zombie, barely able to move - yet I'm alive, and it hurts as I move - sheer agony, though I'm shambling, barely able to move some days. Took me 7 hours to simply decorate a cake...I was in tears.
- —Alices_Wonderland
Run over by a steam roller
- My mom had Fibro, I'm sure of it, but she was 73 years old before we realized it, and only because I diagnosed myself (confirmed by an M.D.). I've been on both ends - listening to my mother talk about how her arms and legs burned, that she was so weak, that she couldn't lift simple things anymore. It took me several years to realize that *I too* was in pain all the time, with the same burning and pain that she described. She would say to me, "Elizabeth, I feel like I've been run over by a steam roller." And now I say that to others. It's like a horrible, never-ending case of the flu. You want it to go away, and if it won't go away, you want to just be able to ignore it, but you can't do any of it. At least now I have a pain medicine that helps me sleep. But I still don't feel totally rested.
- —Guest Elizabeth
The everyday challenges of not knowing
- Its seems like my everday challenges are so unpredictable. I am struggling financial with 3 children and not being able to work anymore. Fibromyalgia is a nightmare and there are more bad days then good. I cant seem to handle any kind of stress and the aniexty is overwhelming. My kids and family are so supportive and they are what keeps me going. Living with this affects everyone who lives with you too. Now I have to keep my mind totally relaxed and calm..no tv while everyone is working and at school. I find the pain unbearable at times which keeps me very distant. It is so frustrating not being able to remember where you parked your damn car or even your phone number. Fibromyalgia sucks.. But I smile anyway!!!
- —Guest LeighAnn
My everyday ache
- I was diagnosed in 2009, it took a year and a half before I was given this diagnoses. I have always been active, but I can remember always having aches and pains within my body. I was a tomboy growing up, I thought the pain was normal. I have a twin sister and two other sisters, I had always asked them if they experienced pain and stiffness. Their answer was "no". After a years of suffering I felt like I was insane. I don't anymore, it is just so dang frustrating!! I am tired of hurting. The sad part is that many people think it is in your head...they have no clue. I thank God for my family and friends and my doctor that are compassionate and understanding of this illness. They key is learning all that you can about this illness to help you cope.
- —Guest CLynnM
It's like Climbing Mt. Everest in a ...
- Bikini... Impossible. One day your fine the next you feel like you have been run over by a truck. One day you are all sunshine & light, the next...just having people talk to you is annoying. Keeping active helps, but it can also hurt. There is fine balance, like climbing Everest, that you can easily fall off the ledge. I just say, "If you have any questions, please ask."
- —Guest Glenda
WOW
- Wow, finally something in writing I think even my father would understand and maybe actually believe. Like most people we come in contact with, they just dont get it! Im tired of feeling the way i do when i have to tell someone for the first time that i have fibromyalgia because i dont want to see that look on their face. The look of , yep she made this one up to get sympathy. Whatever! im gonna print this and hand it to every person that looks at me that way n hopefully wont say anything about where id like them to put it! :-) Thank you for writing this and most of all, thank you for just understanding!
- —Guest Kera
The invisible girl & invisible disorder
- A few of my friends & family know about my fibro. They NEVER ask about though. I don't talk about it 'cos no one but my young kids & husband understand it. I worked hard for yrs seeing dr after dr, trying every pain treatment & diet - to end up diagnosed w an invisible disorder. I tell people "oh I've been sick alot lately" or "...it's part of my thyroid problem" because fibro is a yucky word that makes people judge you. I try to push through the pain as best I can then often excuse myself to the bathroom to rest, cry, rubbing my muscles, trying to stretch it out, feeling isolated & alone. I've fallen asleep at the copier, got lost driving at lunch. Scream & yell @ the kids for no reason 'cos I'm overwhealmed by just making dinner. Now I see a naturopath & take 32 pills/day, eat right, stretch constantly, alternate heat/ice, nap on my lunch break and made my husband go to school to get his massage licence. Much of my day is spent chasing symptoms. People think I'm wierd whiny.
- —Guest mamaj
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