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The Worst Part of Fibro (for me)

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Posted 4/6/2011 3:24 AM (GMT 0)
Hi everyone,
I just wanted to talk a little about what I find to be the worst part of fibromyalgia and I want to know what the worst part is for you?

I think the worst part of fibromyalgia is when people don't believe you. We all look normal, there's not way to actually measure the amount of pain we're in, and we often get comments about this not being a real disease or syndrome (however you wish to refer to it).

For years, before I was actually diagnosed, my friends, family and boyfriends would call me lazy for choosing to take elevators instead of walking up stairs or get mad at me for various things that would bother me that I later found out were a part of fibromyalgia - like I would have to ask people not to touch my skin because it made me feel like my skin was being rubbed off, or having to use the restroom a million times, etc.

On top of that, I have a horrible hatred for doctors because of the way they've treated me in relation to my fibro. At my worst times, when I would make a trip to the ER, I had doctors (before they even talked to me about my symptoms or why I had come to the ER) tell me, "Most of the time, when fibromyalgia patients come to the ER they are drug seeking." My response was always - "hell yeah I'm drug seeking, because I'm in so much freaking pain and I need help with this immediately!" and then I would proceed to cry my eyes out and leave without getting any help...I stopped going to the ER for help after that.

Personally, I don't think my fibromyalgia would have gotten so bad, had doctors and friends/family not treated me so badly or as though I was making this up. That's why I'm trying to dedicate my life to spreading awareness about this disease and gain more support for us fibro survivors. I can definitely say that the deep depression that I went into (which almost led to me taking my own life) made living with fibro much more difficult and I believe that it also contributed to much more pain and agony throughout my body. Even today, when I am put in a stressful situation, my symptoms flare up much more. That's why I'm so dedicated to finding treatments that teach me to overcome stressful situations - because it affects my fibro so badly.

Anyway, I just wanted to know how you all feel about this subject? What is the worst part of living with fibro for you guys? How do you feel about the fact that only those of us living with fibro can really understand what each other are going through. I feel like, even though my parents and best friend watched over me through the worst times of my fibro, there's still times where they don't truly understand and the only place where I can really talk about what I'm going through is online - on forums like this one.

I'm so grateful to be a part of this forum and I'm so glad we are all here to support one another. Stay well and keep smiling! Remember to appreciate the little things in life

I hope that some of you will take the time to respond to my question - I'm really curious about what you guys think about this topic.
Posted 4/6/2011 3:42 AM (GMT 0)
Leora,

Oh boy, this is a tough one, and a great topic. So many things are hard!

I agree that other people's lack of understanding is very tough. But maybe because most of the really significant people in my life DID believe me (and I found a good doctor reasonably quickly) that takes second place to the loss of being able to do what I want.

I used to be in agony almost every night, 20 years ago, and afraid of what I might do if that didn't stop. Now I know that if I live what I call "life lite," I will only be in discomfort or moderate pain most of the time. Of course, I can't DO much of anything....

Debbie
Posted 4/6/2011 11:00 AM (GMT 0)
O boy. Mabey it is knowing that I will race a canoe in the deep adarondack mnts again or that anytime I romp with my dogs I have to stop before I even get started.
Mabey it is the looks I get from co-workers and the comments they make- round about ways of calling me lazy, with a poor work ethic (I belive I am about to get fired for the Fibro Fog & time out of the office as well).
Mabey it is that I have trouble keeping up with my 15 year old and get cranky with him... when it is not his fault I am worn out all the time.
Or, mabey it is my partner feeling like he has now is with an old woman, instead of the fit young woman I was just a couple years ago, working on clearing our land and running around like a maniac just to sweat cause I like it.
I am only 38 and I am not ready to give up so much of my life but I do not have a choice. That is the worst; no control over the personal loss I feel every day.
Posted 4/6/2011 1:01 PM (GMT 0)
I do agree, it is very frustrating when people do not believe you especially those that are close to you! My husband says that he understands but I really do not think that he does he gets irittaed with me over things that are not my fault at all. Like when I forget where i have put something or cannot recall a conversation that we had a week back. And when I have pain he acts like he just does not want to hear it. Sometimes when I have to have a nap inthe afternoon with our 2 year old son, I think that he really thinks that I am just lazy. It is very frustrating! I was in such good helth when I met my husband at 19 years old know after two kids adn 6 years later i feel helpless and foggy, and fat, and in pain. Sometimes I just want to give up. If it was just the pain I would take it, but the fog really gets to me, walking around everyday like I am on auto pilot ugghh. I just wish that people who mock us or think that we are lazy could have Fibro for one day so that they could really see what we have to go thourgh just to do normal everyday tasks.

Kat

Posted 4/6/2011 2:49 PM (GMT 0)
I still enjoy life but wish I could play as hard as I used to. I had to give up golfing with hubby...have difficulty lifting my 2 yearold grandaughter...chasing her around...I miss my strength and energy. Still have zest for life though!!!

Hugs, Robin
Posted 4/7/2011 4:32 PM (GMT 0)
I do wish people would stop saying that we don't look sick. Think about this: how many people who have cancer, diabetes, ADD, etc look sick? Very few but the public automatically accepts their illnesses. Why isn't fibro just accepted? To me, unless you're pregnant or missing a limb, we all on average look fine. It is very frustrating.
Posted 4/7/2011 5:26 PM (GMT 0)
Yes, it is! I try to tell them why I can't put the dog food in the cart (in a very small nutshell) and they say, "Oh, you're fine," as if I'm apologizing. I'm not apologizing. I'm comPLAINing!!

Debbie
Posted 4/7/2011 8:07 PM (GMT 0)
For me the worst part of fibro so far (and I was just diagnosed yesterday, finally after a long time of trying to find answers) is the exhaustion, mental cloudiness, and achyness. There have been times that I could barely make myself get out of bed or go to work or anything because I am so exhausted and achy. The mental fog is the worst though because I need to get through college and get a career. I took this semester off because I was constantly having trouble thinking, focusing and remembering. I would spend three hours reading 10 pages of text and get quizzed the next day and remember nothing. I would ache all the time like I had the flu and be exhausted no matter what. I was starting to think maybe I was crazy and it made me depressed and scared.

Now that I know what is going on, I hope I can find ways to deal with it and make myself able to function well with it. I just got put on lyrica and am hoping it will start to help soon (I read that it takes at least a week usually).
Posted 4/8/2011 1:07 AM (GMT 0)
The worst part of Fibro for me is fatigue and fibro fog. The second worst thing is the attitude of my co-workers. Basically, they say that people who say they have fibro are just lazy. It is to the point that I don't let them know when I have doctors appts, etc. I just tell my boss, who does understand. Thank Goodness! I have missed so much work this year because of Fibro and OA that I am going to ask my ortho for FMLA papers when I see him tomorrow. So, so sorry you had to go through so much unnecessary suffering...both physical and emothional. I do agree w/you about doctors who cannot think out of their small little boxes to research a condition that DOES exist, and DOES cause misery, especially if left untreated. And, I detest doctors who use that condescending tone, don't you?

Wishing you many blessings,
V
Posted 4/8/2011 10:08 PM (GMT 0)
The worst part of Fibro.... Boy there are so many faces of Fibro.  I was finally diagnosed with Fibro in September of last year.  I had been actively searching for three and what finally got the attention of my primary care doctor is I called and asked to be referred to a rhuemetologist crying saying I hurt all over something was wrong.  So that is one of the the worst trying to get a diagnosis but not able to go to the specialist that would know what the heck it was.  Both my husband and my daughter told me to get tested for fibro, and then an administrator at work suggested it as well.  The fog is another face that is one of the worst.  Having to carry around a pen and a tablet to write down directions from my supervisor, or my husband or my daughter or the horse down the street.  But I think the number one absolute worst is the pain.  You never know when it will hit or which form it will take.  My legs seem to be the most attacked.  Before my diagnosis I would sit on my couch sideways with my knees slightly bent becaus any thing touching them would set of the feeling of my legs being on fire.  My husband would give me what ever pain medication we had in the house and I would have a glass of wine.  Yep self medicating.  Now I am on thre meds to "control Firbro" they only control it if there are no outside influences on it.  Stress, cold, too much doing, sometimes I swear it get set off by breathing.  When my legs hurt like they do today even my tiny six pound chihuahua that is my security blanket can't walk on my legs.  He goes up the stairs behind the couch walks across the top of the couch taps me on the shoulder most of the time I say come on and he gently slides down the front of me always stopping before he gets to my legs and turns around and gives me kisses. That's why I love my dogs :)
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