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Old 08-26-2012, 07:34 PM   #1
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Unhappy What do you say to people who think Fibro is not a real condition

Hi !!! I was just wondering...What do say to people who don't believe that Fibro is a real condition? My sister and her friend are both occupational therapists. When I told them that my doctor said I had Fibromyalgia, they both laughed it off and said that it is a fad or trashcan diagnosis...that doctors use it just so they can tell you something when they really just don't know. I sometimes wonder if some family members think that it's just all in my head or that I am exaggerating. Also, some days are horrible and others are fine so when I complain and then I am fine the next day, it makes me look like a liar. Even my husband commented that it seemed awfully convenient that I would end up sick on the weekend when I know I can crawl in bed and have him watch the kids. The reality is, that during the week, he's not here to see me suffer so he assumes that I am fine.
What do I tell these people ??? I don't know how to defend myself. I feel angry at them and I feel guilt even though I haven't done anything wrong.
I almost wish I had been diagnosed with anything other than this so that people would have some sympathy instead of treating me like a drama queen.
Do any of you have these problems???

Thank you for listening. I just get so depressed because of this and I feel completely alone because no one believes or understands.

 
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Old 08-26-2012, 07:53 PM   #2
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Re: What do you say to people who think Fibro is not a real condition

Hi, I'm so sorry you are going thru this. I know it is hard it took me years to get my family to understand and I still have a few I'm working on. cj

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Old 08-27-2012, 04:49 AM   #3
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Re: What do you say to people who think Fibro is not a real condition

Sorry to hear you are having this problem of people not understanding or believing you. Really, there is not much you can do to convince them. When people are arrogant about their opinion as to what I have I normally say something like "I guess because you have never suffered with this condition I can understand how you can be so ignorant about it's effects"..........usually they tend to shut up after that. Good luck with it all. : )

 
Old 08-27-2012, 07:14 AM   #4
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Re: What do you say to people who think Fibro is not a real condition

i tell them i hope they never understand. you have to have it to understand how it feels and i would never want anyone to feel what i feel.
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Old 08-27-2012, 09:32 AM   #5
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Re: What do you say to people who think Fibro is not a real condition

Yes it's very tough... It's been really hard on my marriage especially. The first two years after diagnosis were the worst. I had probs for 11 yrs before that. But I was able to push through the fatigue & even though my body felt heavy, sore, tired... It wasn't pain... Once the pain set in, I was diagnosed not long after. Then it's just continued to get worst rather than better. The only time my husband understand is when I'm vomiting. I'm always best in in evenings which is what my husband mostly sees. With friends & family I don't go around them till later in the day. What they do see if they are here in the morning or early afternoon is me laying on the couch. I'm sure many just think I'm lazy which is frustraiting since everyone should know better...
My husband used to make comments on my weight because it piled on fast... For the longest time & sometimes still, he says how boring I am, I never wanna do something, I never feel good, ect. He will smack me on the leg & treat me like a drama queen when I say it hurts.
If my husband is around & I'm vomiting, he'll watch the kids but doesn't try to keep it quiet... Then as soon as I'm done puking & can move around, he takes of to do his own thing. We have 4 kids. Luckily 3 are old enough to do chores, just wish they didn't make so many messes...
Anyhow, I know what you're going through, most of us do...
We have a close family but my mom is the only one I talk to about it, my sister very little... I don't talk about it to the rest of my family. I don't want to know what they have to say. Before get togethers, I take my series of meds before going around them so they just don't see the worst. I tend to plaster a smile on my face.
Honestly, the people that know probably think I'm making it up. They don't see the pain or fatigue. All they see is me laying down on the couch being lazy. It sux but oh well...
The best thing you can do is focus on making yourself feel better rather than worst. Stressing only causes more pain & fatigue. You have to learn to tell people "no" when you know you can't do something without making things worst. My husband doesn't take no for an answer so I do tend to be bitter. When I'm doing more than I can, I'm incredably grumpy then everyone is mad at me. Just can't win. I guess we just have to learn to except things as they are... We have to stop trying to make others understand & just work on making things easier for us.
My suggestion is to not talk about it to your sister & friend. If they bring it up tell them you're willing to talk about it when they educate themselves on the subject. All because they are in healthcare doesn't mean they know everything.
If that doesn't work, have your sister go to your dr appt with you. Have your dr explain it too her.
I'm sorry you are having a tough time. I know how it is... It will get easier though
I had a physiciatrist tell me that with my husband, it takes two years before they learn to except it. Thy go through a process of denial before they learn exceptence.
Men naturally want to fix everything & they can't fix us. It's hard for them to deal with the changes.
In the beginning my husband kept trying to get me to do stuff I couldn't. It would end up in a fight because I would refuse. But I found it was his way of trying to get things to be back to normal. They don't like change.
Once I was feeling awful but he convinced me to go out to a movie with him. I ended up running to the bathroom sick the whole time... I explained that I told him I wasn't doing well.
Last year we went on a trip. I was sick the evening we left home because of all the packing. Ok the next day, then sooo sick the hole next day. Sick when we got home from the trip. Luckily it gave him a chance to see this... But at the same time, he just as easily forgets...
Anyhow, sorry so long... I can just relate...
Take care
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Old 08-27-2012, 10:45 AM   #6
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Re: What do you say to people who think Fibro is not a real condition

Get info for them to read about it. I am finding more and more doctors do research and I get told there is no cure yet. Have them look at the definitions for fibro & myalgia seperately and they should know then that it isn't made up. If I could be without pain I would. Maybe have them go to a doctor appt with you.

I have been lucky with the doctors Ive come across in the last year. They have each told me that it isnt made up and isnt a diagnosis that doctors put when they have no other idea what it may be. There is research being done to try and figure out what causes fibro and why. This is like every other disease when its still kinda new and they havent figured out the whys. We will know one day the whys I am sure of it.

Hang in there and gentle hugs!!! My family were in denial for a long time before they actually read up on it and seen me at my worst.

 
Old 08-27-2012, 01:53 PM   #7
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Re: What do you say to people who think Fibro is not a real condition

Quote:
Originally Posted by tanasmom View Post
Hi !!! I was just wondering...What do say to people who don't believe that Fibro is a real condition? My sister and her friend are both occupational therapists. When I told them that my doctor said I had Fibromyalgia, they both laughed it off and said that it is a fad or trashcan diagnosis...that doctors use it just so they can tell you something when they really just don't know. I sometimes wonder if some family members think that it's just all in my head or that I am exaggerating. Also, some days are horrible and others are fine so when I complain and then I am fine the next day, it makes me look like a liar. Even my husband commented that it seemed awfully convenient that I would end up sick on the weekend when I know I can crawl in bed and have him watch the kids. The reality is, that during the week, he's not here to see me suffer so he assumes that I am fine.
What do I tell these people ??? I don't know how to defend myself. I feel angry at them and I feel guilt even though I haven't done anything wrong.
I almost wish I had been diagnosed with anything other than this so that people would have some sympathy instead of treating me like a drama queen.
Do any of you have these problems???

Thank you for listening. I just get so depressed because of this and I feel completely alone because no one believes or understands.
I think my post would get deleted if I really wrote what I'd like to say to non-believers!!! Those are the ones that I would like to walk in my shoes for a few months. MaryAnn

 
Old 08-27-2012, 07:32 PM   #8
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Re: What do you say to people who think Fibro is not a real condition

Thank you so much. I am sorry you relate, cause this is so hard. My husband is very insensitive too at times. We will go grocery shopping and by the time we get home, I just feel like I want to die....but he will go plop down in his recliner and watch me put up the groceries by myself. I will ask for help but he just looks at me and says nothing and doesn't get up. It makes me so mad.
I think my fatigue bothers me more than the pain. I feel like I am always walking through quicksand and my leg muscles burn...and my arm muscles burn and feel weak when I blow dry my hair and afterward, I get muscle spasms in the tops of my arms.
With the fatigue, when I am done, I am done. I will have to put the kids in bed with me to watch cartoons while I dose on and off. Even worse, I have to fight falling asleep behind the wheel. I have sleep apnea too though so when I get my cpap machine, maybe that will get better.
I've gained alot of weight since my pain started too. I had just lost 40 pounds but feeling horrible and going to doctor after doctor and eating comfort foods...it wasn't long before I had put all 40 back on.
Thank you for the long post. It's nice to know that I have all of ya'll who understand what I am going through. I am so glad I found this group. Thank you everybody !!!!

 
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Old 08-28-2012, 08:45 AM   #9
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Re: What do you say to people who think Fibro is not a real condition

I am very fortunate that I have family and friends who believe me and are very supportive. I have disassociated myself from a few toxic people who make my fibro worse. I like Blue's answer in that you hope they don't have to understand it because they are not afflicted and will only understand it if they had it! I probably wouldn't discuss it with people who don't and won't understand it.

 
Old 08-28-2012, 09:00 AM   #10
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Re: What do you say to people who think Fibro is not a real condition

Hi I was going to suggest too to maybe get him to go to a Dr. appt w/ you but then I read thru the other posts and saw someone already recommended it.

My hubby is understanding most of the time but there are times he loses it and complains, I don't blame him to some point, what kind of life is this for him I think? All he does is take care of me, fixes my food, does the laundry, cleans, etc. While all I do is lay around, I guess I feel guilty, huh?

anyways, another thing I wanted to tell you was I take Provigil (or the generic) but not everyday. I take it on days I need to get something done, like go to the dr., drive a long distance (I have chronic fatigue as well) or maybe just want to be able to hang w/ hubby for like half a day w/o the feeling of dragging around. It does help, maybe ask you dr. about it. It helps you stay awake, gives you some energy. One side effect I have is that I can get a slight headache at the end of the day I just have to watch it and take something before it gets bad. It is non habit forming, works differently than adderall and other meds.

cj

 
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Old 08-28-2012, 09:47 AM   #11
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Re: What do you say to people who think Fibro is not a real condition

Tanasmom- The mask should help allot! I had a sleep study recently & all was fine... But I've never been one to nap. I only do that when I get a fibro headache or vomiting. Have to take my muscle relaxer to fall asleep at night.
Having the machine will releive some of the fatigue which will also lessen the pain I know it's not good to have apnea but I'm really happy to see you are on the right path! It won't get rid of your fibro but will make it easier! That's great!
I'll never forget the first time I had my husband read about fibro & chronic fatigue. He got up and said he didn't believe most of it! I was so mad! I had saved only the info that pertained to me & he said he didn't believe it... I was so angry. Now I just don't care. Well, I try not to atleast. It is what it is. I'm doing my best to control it.
Im not sure where my weight came from. I was still active & it was right before the pain set in. No change in diet or activity... Just gained 30 pounds in 3 months.. But I had this happen when my probs started when I was 18. A few yrs later the weight melted off... I'd lost 55 pounds in 3 months. Not sure how. I guess it just depends on my metabolism. I'm one of those people that isn't big on food. Things don't usually sound or Taste good. I eat only when hungry & only small portions because I get full easy. Ugh
When you put away groceries & over doing it... Do you notice gettin grumpy?
When I do that, cook dinner, ect I notice I hurt more & more. Then I'm short tempered & snap at everyone because I'm ready to sit down & rest.
Next time try saying "I am really exhausted & sore, could you please help me so I can relax & spend time with you?". My husband wants me to sit & watch tv with him when he does. If I can get him to help me, then I can sit with him. Also, the physiciatrist I talked to says that men don't understand hints. You have to be blunt, which you are when asking him to help. I just think that if you point out the obvious "duh you idiot, I hurt so get off your but & help me" but nicer of course maybe he'll get it & help.
My husbands outside now & been trying to get me out all morning. But I hurt, exhausted & waiting for my series of meds to kick in before I go outside. Unfortunetly I've learned to not do what he wants me to do & put my own needs first. It's tough but oh well...
Make sure to tell him that you are not giving up. You are seeing doctors, takings meds, ect. You are doing everything you can. I usually exercise but since I've been the one taking care I the farm animals, any energy I have goes into that, dinner & basic house work. Plus 4 kids not in school all summer... Ugh
It takes time but it will get easier... Unfortunetly they don't see how we feel. It's unfortunet they can't be in our shoes for just a few days...
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Fatigue & Derealization (PTSD?) 1999
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Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 08-28-2012, 10:35 AM   #12
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Re: What do you say to people who think Fibro is not a real condition

You should have the last laugh as it has been proven that fibromyalgia does exist,over a million people have been diagnosed with this disease and it is not all in your head, the pain is unbearable and for people to think you are making up this pain are ridiculous I would like them to see what we sufferes go through it is awful .hang in there.

 
Old 08-28-2012, 11:57 AM   #13
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Re: What do you say to people who think Fibro is not a real condition

How about showing some well researched medical articles - there are plenty on line. Another option is reminding those non believers of all the things that you have to forgo that you would love to do - in my case physical sport/full time work/an all day clothes shopping trip/city trips in winter etc if it was made up then why would I not be doing those things - it's easy to focus on things like grocery shopping etc?? Fortunately I've not met anyone who doesn't believe me (don't think they'd dare not to!!!!!)
And a PS from me - if you're hurting then please don't put the groceries away - you know you'll end up paying for it the next day - and the more you do it the more others will expect you to.
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Old 08-29-2012, 12:31 AM   #14
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Re: What do you say to people who think Fibro is not a real condition

I know that feeling! My fibro started within the year after high school (4 years ago) and it was a slow decent. It took 2 - 3 years before I had to start limiting what I did, but by that point my friends had already started to not invite me out or want to hang out because I either said no a lot or I wanted to be chill. I lost a lot of friends really quickly. Thankfully, my now fiance met me when I was in a really bad flare over the summer (2 years ago!) and was really patient and interested in what was going on with me. He's been working with me ever since and only gets upset when I get moody/grumpy from the pain and I snap at him (not that I want to, it just happens). My dad and all of my old friends are another story. My dad doesn't believe I have it or that if I do if I just start working out it'll go away. Ha ha ha. I wish! I hardly have the energy to get out of bed a lot let alone do the work outs he wanted me to do. He still asks me once in awhile if "that weird pain is gone or is it still hanging around?" I just shake my head now. I suggested that he come to the doctor with me a few times. He came once and just tried to push his own agenda instead of listening... It helped with a few of my friends though, so it is worth a shot! I also printed out a description of fibro and its symptoms and highlighting what was affecting me, and I told them that is why my life was changing. I'm 21 (turning 22) and I haven't done anything with my life because I can't, how can that be "faking"? Another good idea is getting them to sit down and talk to some of us in a chat room or on this forum with their questions and concerns. I did that with my Fiance and it helped him a lot.
Best of luck!
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Old 08-30-2012, 09:46 AM   #15
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Re: What do you say to people who think Fibro is not a real condition

I used to be one of those people who didn't think it was real because i was alwasy told it was the lazy mans disease. Last year I was diagnosed with fibro and it all started with horrible fatigue, brain fog and some pain. I was still in denial and didn't talk about it. After two leg surgeries, weight gain due to lack of mobility, manopause and to top it all off moving from a house we had lived in for 21 years I have had pain like never before. Sometimes every inch of my body including my eyeballs and teeth. I am so stressed out because I am waithing for 3 doctors to decide what I can take for it due to my anxiety and seizure medication possibly reacting to what I take. I am stressed out because I am missing work. I am so sorry that I didn't understand in the past. I was a very active high functioning fibro person they told me but now that has all changed. It is very real and I understand people not believing or getting it. My husband is one of them. I am hanging on by a thread trying to figure out what to do. I will keep reading your posts and learn. Maybe the non believers should read it too.

 
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