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Recognizing Fibro as a disease
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cindyrc posted:
The fog is one of my biggest problems, I still try to work mainly because no one around here think fibro is a real disease, you should hear them when i say that i have it, it is like oh yeah that is good. no it is not, with them if it is not something that you can see then you have nothing wrong with you, i work with intelligent people but they still don't think that Fibro is a real disease.
Anyway reading this helps today since i am in a real fog and cannot concentrate on anything. reading that others suffer from the same problems really feels good even though i feel bad for all of you with your pain because i can feel it. thank you for sharing
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Anjl26 responded:
Welcome! This is one of the main complaints that everyone has. Making people understand just won't happen. You can try informing them, giving them facts, but if they don't want to hear it, then it's a waste of time and effort.

Focus on doing the things you need to do to help yourself, with no excuses or explainations required. If a friend is truly a friend, that person will support you in your efforts.
Being happy doesn't mean everything's perfect. It means you decide to see beyond the imperfections. hugs Sharon
 
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fibroinsd responded:
Cindy...glad you found us...and that reading here is helping...It is hard when people just don't understand.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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An_199027 responded:
This is the reason I keep it to myself. I am very personal about who knows my medical history.

I have had this since around 1992, But I would also like to mention that I "don't" think FM, is considered a disease. It is a syndrome. Thus the reason it is sometimes called FMS.

But also hope you find the help and information you need to get through this from this forum.
 
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pocotaz responded:
I agree with Sharon...you will go through life with people who believe and people who won't... and although frustating..it will only upset you even more if you try to get hose who don't believe to "get it "...they won't and it is a waste of your precious time...

Try to read the TIPS and RESOURCE sections of this board ...this is where you will find help in how to manage living with FM... try things you think may help you... learn as much as possible to help you live with FM..

You will find that you just have to let those negative comments roll... there are other illnesses out there that some think is real and some don't... unless it happens to them..they won't understand it.. so you have to just accept that fact and maybe avoid talking about it when those who don't care are around...

I wish you well.. hope you stay and join this FMily...post when you need and ask away...very helpful and caring people here...

Linda
 
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debw216 responded:
Hi Cindy and welcome!!

I am sorry to say that I used to be one of "those" people who didn't believe that FM was real.

I have had Lupus since the late 1980's, diagnosed in 1991. And since my PCP and I had this disease under control with meds, I never saw a Rheumy.

Well, that changed just this past March. And one of the first things he said to me, was that I had FM and probably had it since the late 80's too!!

I responded to him with ,"Yeah, but isn't FM more of a "wastebasket" term, and really not a disease at all?" And Oh Boy....he looked right at me and said, " That makes me so mad when I hear people say that. OF COURSE it is a REAL disease!"

I left there with my tail between my legs, and all sorts of paperwork in my hands. And he told me to read everything that he had given me! Well, I did....and I sat there and cried. Because what I was reading....had everything to do with me....

And it was then, that I found this board, and started reading posts....balling like a baby, while I wade through all of the posts...I felt so ashamed that I didn't believe that this was a real disease!

If it really matters to you if your co workers believe you have this horrible disease...then print out of material on FM and let them read it.

Or better yet, get some material from your Dr office and let them read it. Or, if you really don't care what they think...Just know that "WE" know that this is REAL. And YOU know that this is real!

Please come back, and post often... Post about your fears, cry with us and laugh with us. Put your feet up and just be with us... Because WE know what you feel like!!

Again, welcome to your new FMily...
Sincerely,
DebW
Faith is daring the soul, to go beyond what your eyes can see. Author Unknown...
 
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An_199028 responded:
I don't nor will I discuss my medical problems with anyone, let alone co-workers. I don't even discuss my medical history with my sibilings, but that is just how I am when it comes to private matters in my life. I have had one doctor tell me it was a "waste basket" diagnosis, but then I had one who believed in it. It just depends on people's opinion about things like everything else.

I personally believe it is a syndrome, not a disease. I think we all have pain of some sort, weather it is muscle, joints, nerves, the only difference is "everyone has a different pain tolerance". Our bodies will have unexplained pain, it just depends on how you react to it.
 
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Dollbug responded:
Hello Cindy......and others.....MiMi in NC....I am so sorry that you are having to deal with this....but you know....because we do not "look sick"....it is truly hard for people to understand....until they have walked in our shoes....really...no one understands....even the doctors do not "get it"....except for Dr. P....and he "has it" so he does "get it"....I do not like calling the wrath of the dragon a disease though.....I like to refer to it as an illness....as I know that there are things that a person can do to cope with it....

We are all right here with you though....and we do understand what you are dealing with....so I hope you and anyone else who feels like no one really understands can come here to this unique FM support group and feel better about what you share....besides this....you might find a lot of good "tools and tips" that you can also try....be sure and review the info under Tips and Resources to the right of this page...especially member toolbox and nutrition and vitamins....

I would also encourage you to ask your doctor to check your Vitamin D level....which is so important for some of us FMers.....low Vitamin D can cause pain within itself....I am living proof of this....a simple blood test....but you MUST ASK the doctor to run it....as it is not one of the general things that they check for....(yet- as I hope soon this will be part of the normal bloodwork)

I hope you will post often, ask questions, make comments or suggestions.....

Take care and good luck...


MiMi
 
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KindaSweet responded:
I know how you feel. I dont bother telling anyone i have fibro anymore. People just dont understand but i feel that Fibro will come out more and more as time goes on. Having this can sure make you feel alone and im so glad web md has this site.Who else can understand but our fibro friends. Im fairly new here and enjoying talkin to people. Take Care!
 
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lb707 replied to KindaSweet's response:
I kept it to myself for years because of the things people say about it. Good thing is my Dr. sent me to Rheumy in the early 90's for DX. Still did not discuss it until I had to keep cutting back my hours at work.

One of the nicest people I have dealt with was a SSD therapist who examined me and I feel she was instrumental in me receiving SSD. She ask a lot of questions that put me in tears, she was able to bring out the fibro fog. I got my letter of acceptance in two weeks. I would love to see her on a regular basis but she is in a different town.

I hate the eye-roll..... I have a friend with a lot of energy who always looks tired. She loves to say you are the sick one and I am the one who looks sick. If I didn't know that she does understand and believe I would hate her.

Another one I hate is why aren't you taking that med on TV that cures it. Well it helps some and some can't take it, something they just can't understand.

Laura
 
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angelldakota responded:
I have not always been a believer... I was told a year ago that I had it ... It was actually my 13th illness... I am up to 18 now and 15 are pain illnesses... fm seems to be dominate these 4 months.... but for the first 3 months I was pretty much defiant and a non believer... I didn't want another diagnosis and didn't want more pain... especially more incurable illness... I have enough didn't need more...

so here I sit sometimes dealing with people who aren't supportive and non believers and then a few that are believers... to the non believers my fog is being over medicated... my pain in my head... need more drugs to screw me up lol... you know the mental drugs lol...

Doesn't matter that I have cut back on the pain meds and put up with more pain to get them to shut up... doesn't matter that due to the structural pain I have I do show lots of pain lol...

some people just don't wish to give us a chance to try to live a close to normal life... we can do that with more acceptance... we can find ways to deal with our pain and accept ourselves... we can find more peace in life with their support and acceptance... and if we can't receive it we can still move on to find it with in ourselves by believing in ourselves and believing in our own strength... this can be done...

I have practiced this for 28 years...My daughter is was an infant when it first hit me... The Mayo Clinic said that in 50 years they would figure out what was wrong with me and another 50 years to find a cure for it... well for me it only took 26 and a half years and guess they are working on the cure....

after the last 4 months worth of flair I believe in it now... more then I did before... I had read a few books and info sites on the web... I read here daily but commented not that much... and didn't or don't post that often... I think I still have some ways to go...



I hope you come back often and read as much as you can there are some great sites out there... some very helpful... one of my favorites is...

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_science

I hope you get much help from here and feel free to ask lots of questions... the people are great here... I know you fit in already...

bless you... love... jan/angelldakota
 
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Tany84 replied to debw216's response:
I agree with your Dr., it upsets me when people think it is just a catch-all term. There are common symptoms that you have to have before it is diagnosed. For instance, the 18 tender points, at least 11 of which have to react to pressure for a positive diagnosis. So are there just dozens and dozens of conditions that all have the EXACT same symptoms? It frustrates me that just because a person hasn't gone through it they don't think it's real. I'm so glad to have this FMily who understands what I'm going through!

Hugs!

Brittany


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