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Mind over FM or Just Judgmental Jerks?
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BelPwnt posted:
Bit of background:I'm a 36yr old happily married mother of 3, I've had hereditary back issues from age 17, and was diagnosed with FM about a year ago (I'm guessing, the joys of the near constant 'fog'). I went into my Dr. and then a Neurologist and then my Dr. again when the pain was so bad I could barely move. Having gone through 3 all natural child births I rather thought my pain threshold was pretty good, so this new debilitating pain scared me!

The Now
I'm in and out of a wheelchair since the pain can come on suddenly and I can't count on my legs anymore, or my arms to hold me up. I'm on Cymbalta, amitriptylin, and I've just finished my high dose vitamin D run but still take a daily supplement. I take tramadol and vicodin for the pain as little as possible (I'm afraid of becoming dependent), and kolopin to keep my stress level down. All in all I'm doing a lot better than I was, I get a bit of exercise every day, and though I've yet to have a symptom free day I do have hours at a time when I almost feel like the "old" me.

The Issue


So, I figure I'm doing what I'm what I can and feeling pretty good about it when I venture back out into the world and end up running into people I barely know who are surprised to see me in a wheel chair. They always ask why, I always reply simply that I have FM figuring that explains a whole host of things! I keep getting similar answers that just don't jive with anything I read here, so I'm wondering if I just have bad luck with people or what's going on.

About 80% of the time my "I have Fibromyalgia" answer gets "me too, but I just decided I wouldn't let it get the best of me." WT*? On occasion I get a variation, "Oh! My friend So-and-So has that, she says gardening and going for long bike rides helps her. She even did X and Y amazing things."

The comment that put me over the edge was from a friend of the family who said she's a nurse (though I have my doubts) and has FM and has told my family I'm over dramatizing the situation for attention. I've lost half my support structure over this, and I'm just sick about it.

So well...?

P.S. Sorry for the long post
Reply
 
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wyldaeval responded:
I'm sorry to hear that what should be your support system isn't very supportive right now, and I hope that will change for you. The more your family knows about fibromyalgia, the easier it will be for them to try to understand what you're dealing with.

So many people that aren't personally affected by FM don't have any idea of what living with this is like. It affects all of us differently, and the flare-ups can come and go allowing for a more physically active life at times.

I was diagnosed with FM in 1991. At that time there were still so many doctors that didn't believe it actually existed, it was difficult to get anyone to listen or understand what I was going through. One doctor even sent me for a mental evaluation because she didn't believe I could be having so many symptoms without any "real proof" that something was wrong. It was an uphill battle for years before I was able to get my family and friends to understand what it is and how it affects me. There are still people in my life that are skeptical about FM or just don't know anything about it, and at times it can feel like I'm being judged lazy and/or crazy, but I've done what I can to educate the people closest to me. The hospital here has a support group for people with FM. Maybe you can find one near you.

(((((((Hugs))))))) and understanding,
V.

About 2 years ago I was able to work 12 hour shifts on my feet in a physically demanding job, then....I got in an accident and broke my hand. The subsequent fibro flare made it impossible for me to work. Before that my last flare was in 2004 and I was unable to walk more than a few steps most of the time, resorting to crawling just to get to the bathroom. That flare-up lasted for nearly a year. This one shows no sign of letting up any time soon, but I had surgery a few months ago (for an unrelated condition) which probably didn't help with my body's response.
 
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mischelle360 responded:
I say... Judgmental Jerks!

I'm tired, it's late, and the fog is thick, lol... But e1 is affected differently with FM. Some have constant pain worse than others. Some have pain that comes and goes... A flare can last a year or more as I have been in one that long this last year. Mine hasn't put me in a wheelchair yet but Lord knows I have been tempted a time or two at Walmart!

I am 41... Don't let it get to you when others compare you to others they know with FM as they truly don't know the extent that their friends or loved ones suffer, nor does it affect two people the same exact way.

We might all have some of the same symptoms some of the time, but we do not All have the same symptoms All of the time.

For me Stress is what puts me in horrid flares... getting injured does as well... getting sick will... it just depends. But stress is what has me in it's grip now and doesn't want to turn loose.

I am thinking that maybe 3 natural child births could very well have affected you more than you think. They say that is the closest someone comes to dying... is while giving birth. I know each one of mine took it's toll on my body, yet I did have epidurals with all of mine. I couldn't imaging going natural.

I do think, or at least am hoping, that there are meditations that can help us fight this dreadful monster we live with, we just have to find what works for us as an individual. I am not saying it can or will take the pain completely away but surely we can find a way to have more good days than bad.

There are nurses and even Dr's that have FM. Dr P here is one of them. I have also seen where several nurses have had to quit their jobs due to they couldn't stand to work any longer with their pain and firbro fog. Yet there are others that are still able to work...

Take Care! And try not to let others get to you as they might want to "know it all" but in reality, they haven't a clue.
 
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Ameliamv2_9 responded:
First off Im sorry, I think that most people here understand what you are going through. We have all had it. My answer to you is simple- everyone is different and with FM there are different levels of the condtion. There are some that have a flare up a few times a year, but can still work full or part time. Then there are some that as long as the stay on there meds the can still live a fairly normal life. Then theres some that start a flare up and have it for years, then it goes away. Some it will never go away and you can only hope for those few hours here and there of feeling ok. Just try and explain it to those people that have left you over this. Thats what i have had to do. But basically they can believe what ever they want, but you are the only one who really knows how you feel. So dont let others tell you that you are wrong. Hope things get better and try to not get too upset it will only stress you out.
 
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ValarieW77 responded:
I am sorry you have to deal with such ignorance! Some people just don't understand Fibromyalgia and they don't think before they speak when confronting someone that suffers daily with this illness. I know easier said then done, but please try to rub off the ignorance and continue to do what you need to do. You do not have to explain yourself to anyone! Only you know what pain you deal with on a daily basis, not them.

wellness your way!
Valarie
 
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fibroinsd responded:
Before I even read your post...I was ready to say Judgmental Jerk...I think we have all been there...and you have to somehow get to the point of realizing that trying to explain this is like talking to a wall...people just don't get it...

The only suggestion I could give to you ...would be to do a search here for the Letter to Normals...If you can't find it....let me know...I know I have it somewhere on my computer !! It is a good letter that you could give your family.

hugs to you...and come here...to vent anytime..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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WomanInBath responded:
No, no one hears or understands except us!

I swear, if one more woman says to me "Oh, Fibromyalgia,,,,,Yeah, I used to have that. It lasted about a month."
I'm gonna punch her right in the nose!!!!!!!!!!!!!!!!!!! (not really,
it would hurt too bad.)
I know it's just because their Doctor used this term as a "Get out of my office, you depressed, lazy woman."
This site is the best for discussing anything related. Each of us has something really important to say and should say it. You never know who it may help.
Fondly my Fibro Friend, Meg [a name=2> 10 hours ago WomanInBath replied to WomanInBath 's response: My own Brother asked my Mom "Why doesn't she just get a job?"
I was crushed.

Seems eveytime I get the courage to tell people what I have, it somehow, gets no where.

One tip that I did was to send this forum to my immediate family, just so they could read as little or as much as they felt like because everyone here has the same complaints and feelings, etc. ----I'ts NOT just me.
It made my Mom cry so I know she really read enough to know....Something. She forgets because I look normal.
Keep On Truckin'
 
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jroseland replied to WomanInBath's response:
I don't usually run into this problem but I hate telling people I have FM, just because I feel like I have to explain/justify it to them.

My new strategy might be to tell people I have a central nervous system disorder where my body overreacts to pain. What can they say to that? There are studies that prove this.

It seems to me that you could use the record of your life prior to this. You're obviously tough. So if it's worth your time, you could explain these facts to people.

I have to admit, that while I don't often need to explain my FM to people, I have this desire for people closer to me to know why I'm not as busy and productive as others. I am only 28 and my peers all lead very busy, productive, go, go,go lives. And while I've had to accept that I won't ever be like that, I guess I still have a bit of pride that wants people to know I have a reason.

I guess this is just another issue we deal with !
 
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WomanInBath replied to jroseland's response:
That was beautiful!
FM has been my little shameful secret because of the way people re-act to the word. Those who believe that it's all in my head,
They say,,,,,
If I were more positive, I could beat it,
if I tried harder,
concentrated more,
prayed more...etc.

I have done the same as you, I say "that my brain processes pain differently and makes me hyper- sensitive to pain, that it effects mostly my joints and muscles., head-aches, sensitivity to light and loud noises."

That's what I say if they haven't already walked away!!!!
OR the other option is.......they tell me it.s all in my head and I should read books by Wayne Dryer about the power of positive thinking. I have read many books and pieces here and there DO help but this so -called New Age Cures and Mind / Body healing is not working for me and No-One could have tried harder or believed more...............But still it is here all day and all night!!!!!!!!!!!!! Doublle Damn!!!!!!!!!!. It does lessen with these therapies but that lasts only 15 minutes of the day. what do I do the other 23 and 3/4 hours of the day?

The therapists tell me to give up my dreams of being the way I used to be---That just will never happen. periud,
(Unless there is a cure for Fibro)
They say it is a waste of precious energy, energy that could be focused on living a stress free life and never being able to run again. Flat out told me to give up my dreams and use that energy on reality.

I have NOT come to terms with this!!!!!!!!!!!!!!!!!
My big, wild, crazy dream is to run and play catch or Frizbee with some dogs!!! How crazy is that?

Sorry for the bitterness in this letter but that is just how I feel today.
I also, believe that the FDA have their own agenda and we dont have the resources to fight them.

Thank you for bringing up a topic that really let me get it all out, thank you again.
Fondly Meg.
 
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Lauralizzie01 responded:
Lol... I believe they are somewhere in the middle. For so long Fibro was "touted" to be a catch all disease blah blah blah... until very recently I didnt know anything about it, I think that commercials for the meds ADD to the connotations of fibro being fake blah blah blah,
I also think when people act like this they ARE truly trying to be helpful, basically a keep your head up, empathy thing, but they don't understand that they actually make it worse. They ARE being jerks, but unintentionally, and worse than that ignorantly.
 
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georgia888 responded:
I'd like to give just a tiny bit of a benefit to those who may doubt our condition. Please don't misunderstand me as my level of FM is severe & is accompanied by osteoarthritis. I live in an almost constant flare & fear for my mobility.

Let's all just think back before our affliction with this horrible condition. Could you ever have imagined such symptoms existed? We can all relate to headaches, strained muscle, bruising, etc. but who ever would have thought that short of cancer, the body could be subjected to such horrific head-to-toe 24/7 symptoms?

So perhaps these "judgemental jerks" have no imagination to pain, as we lacked before our bodies succumbed to this syndrome.

Take care,
georgia
 
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BelPwnt responded:
Thank you, thank you all so much. This illness is isolating, even though I have people in my life who do 'hear' me and want to understand.

I think it's time a lot of people in my life who have chosen to think of me as a lesser person because I can't do what I used to be able to got that letter.

I'm so grateful to have this space to vent, to have others who really understand.

Yesterday I went to Ikea with my husband and our 3 kiddos, we had a blast but at the end of 2 hours I couldn't even move my wheelchair on my own any more. I couldn't hold my purse, it was like my body was just done. I told my husband, "I'm still in here, please don't forget that." Our youngest (he's 10) had over heard it and he came over and hugged me and said, "We know you're here, Mommy, always!" He then took charge of "shoving Mommy" (his playful term for pushing the wheelchair).

I want my old life back so badly, I want to play soccer with my kids and roughhouse with our 110 pound dog...I want to go for long walks in the Texas hill country on our family's ranch...I want to be able to rely on my body.

I guess it's a grieving period we all have to go through. It's not the same as giving up, which is something my husband doesn't really understand. But I bet you all do. :)

Tonight we have a friend coming for dinner, tomorrow I'm supposed to go shopping with my mom, and today I have a mild migraine and that inexplicable exhaustion.

There is on gift I've found in this; I live in the present. I take life moment to moment, step by step, and I appreciate the little things far more than I ever did before.
 
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KatmanduLou responded:
Welcome BelPwnt! I know that none of us wants to be here, and we try to help when we can. I'm sad that you're so young and FM has taken such a toll on you.

FM is different for everyone. I'm 51 and was dx'd in 2005, I have few flare-ups, but struggle with stress and fog. I take amitriptylin before bedtime and tramadol for pain; the doc said the tramadol isn't addictive or bad for the stomach, if that's a consolation. One of my friends - a doctor - told me she "doesn't believe in FM". Like it's Santa or something! I've known a few people who have been dx'd then UN-dx'd and found to have something else. I have a friend who suffers - really suffers - with her FM every day.

I appreciate your frustrations with people. There seems to always be someone with either a horror story or someone who seems to have no symptoms at all. When someone says "me too, but I just decided I wouldn't let it get the best of me" ask her (and it's usually a woman) what her doc has her doing - meds, supplements, exercise, etc. Become an expert, whispering things like "Do you take tramadol? It's a wonder drug, isn't it?" When she realizes you have the lingo, she'll probably back off. It has worked for me!
 
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1wareaglefan replied to BelPwnt's response:
Hello, and welcome! I understand exactly what you're talking about with the grieving period....I'm sure everyone on here does. Somehow that's comforting to know. This summer I went through that stage, then felt like I got over it, now here it is again with my newest pain issue.

Everytime something new comes up, or we hear a comment from someone who doesn't get it, I guess we go through it all over again. I don't know. I just know that it's so wonderful to be able to come to this place, where I know others are in the same boat and understand how I feel.

You're right about living moment to moment and enjoying the little things. I feel like my life won't be the same as it was before all this pain started, but I'm still me, and I can make something good out of it....of course with God's help.

Take care and God bless.......Elizabeth
 
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Barbara0531 replied to wyldaeval's response:
I've had FM since age fourteen and I'm fifty five now and I had the same thing happen with a doctor sending me in for psychological tests when I told him I lost all the feeling in my arms(I have had three back surgeries and have other spinal issues). Then I went to the Mayo Clinic in MN and was diagnosed with FM. Went back to this doctor and he told me he had that in my chart, he just didn't tell me! Never went back to him again.


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