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05/11/2008 18:16
ilovegnocchi
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Hi,

I was recently diagnosed by a rheumatologist with fibromyalgia. I am dealing with it as well as can be I guess. It's hard to accept that you may never be "normal" again. I've been not feeling "right" since October 2007.

I am having an especially hard day today because I feel like my friends and family do not understand what I am going through. I've shared the news of my diagnosis with select people in my life...some have not even responded or shown they care and it's hurtful and disappointing. I feel like it's hard on me because I own a home by myself and it's tough to keep up with household chores (and painful to do them). I can not afford a cleaning service and am not sure how to go about seeing if I can get some help. Some have offered help, but sometimes I feel like people just offer but don't really mean it...it's just a catch phrase. I just feel a little alone in all of this and I feel like if people knew how it felt to be me they would offer to help me more and be more attentive and loving at this time in my life.

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05/11/2008 20:30
malaluka
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Hi ilovegnocchi,

I'm really sorry that you have been diagnosed with this hateful complaint,

I find it amazing also that friends and family are unsympathetic regarding this

I think that because we don't look sick then they don't believe that we are

either that or my family are total dolts

A little help once in a while would be so gratefully recieved even more an undertsanding look or a hug now that would be great,but no.

Do you have support groups that you can go to besides this great group of people here I find that they can be helpful espically as the people there have what you have,and like this group understand the problems that you come up against.

Keep your chin up except the help that people offer maybe they are being sincere

you will soon find out.Try not to let it upset you to much as you are the most important person in all of this when it's all said and done.

Hugs malaluka.

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05/12/2008 03:16
ilovegnocchi
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Thanks malaluke for the kind words.

I know there is a support group where I live, but I heard from my dr. that many people have not enjoyed it (also heard that from a friend). I guess people just whined a lot and it was sort of depressing...so I am not going to look there for now anyhow...



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05/12/2008 08:34
bearsjewel
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you will find that most of your family and friends will never understand and the friends that dont will eventually fall away. there will be some that stick by you no matter what. as for the support group please give it a try. Yes there is probably alot of whining but you know what that may be whining to someone else but to us is a way of gettting out our frustrations and fears with someone who knows exactly where they are coming from since only someone with fibro can know what you are going through with no question. we all may sound at one time or another that we are whining when we post here on this site but we need to get these feelings out or they could probably drive us nuttier than we are (smile), no i know we are not crazy just need to break the mood alittle. I find humor helps me alot at times. God Bless You, bearsjewel
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05/12/2008 08:35
bearsjewel
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oh yeah NORMAL is relative and my relatives are nuts so i guess i am close to normal lol
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05/12/2008 09:07
sindee4499
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Welcome to the wonderful world of fibro LOL it is very hard when you are first dx'ed with this dreadful disease and family and friends usually don't understand at first if ever the best thing you can do is find out as much info as you can about this disease and educate them and who ever else will listen. I was dx'ed about 6 years ago and there are still days most days actually that I feel like noone around me gets it or understands and it is true that unless you suffer with this there is no way of them understanding I get upset at times and tell my husband and kids I wish they could live in my shoes for just a week and so they could see what I live with on a daily basis but then I quickly take it back because I wouldn't want anyone to go through what I have to on a daily basis but anyway one thing I have done is any time I find something that I feel truly represent what I go through I print it off and give it to them so they can see it from someone elses prospective so maybe they will realize I am not CRAZY or a hypercontreact (sorry spelling?) and get use to that and try and take it with a grain of salt and laugh it off cause you will hear those words alot. I now just say when someone calls me crazy "Unfortunatly I AM NOT CRAZY if I were I WOULD HAVE my disability" LOL
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05/12/2008 21:18
mysticwolf43
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Hi again ilovegnocci. Sorry to hear about your friends and family not understanding what you are going through. It's so unfortunate that we live in a society that unless you have a body cast or something else that shows you have an injury or r in terrible pain everyday people just don't understand what we go thru day after day after day. Sometimes u feel like wearing a sign stating "HEY EVERYONE I HAVE FIBROMYALGIA!" I was diagnosed quite a few years ago after a back injury and to this day people still say, "well you look like you're feeling better." I can't say that it gets any easier because there will always be that one person that will never understand, God forbid that they should have to live with the pain and suffering that we do! I thank God everyday for leading me to this site and all of these wonderful people, because I know how hard it is to have a husband and children who try to understand but at the same time u can tell that they get tired of hearing it over and over. So my friend hang in there as best as you can and just remember you've got lots of understanding friends here! Good Luck and I look forward to talking to you again soon! Gentle but supportive hugs to you!

Deanna



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05/12/2008 21:35
Mydragonfly
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There are a lot of people in this world that are never going to understand how we feel. the only thing we can do is try to educate them. If they do not respond to you trying to educate them, then try to educate someone else.

living with fibro is not an easy thing, but we all must go and with what life gives us.

dragonfly

The Dragonfly brings the light and color of transformation into your life.
To learn more about Fibromyalgia
www.fmaware.org ***
www.webmd.com/fibromyalgia *** www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm ***
www.painfoundation.org *** www.rheumatology.org/public/factsheets/fibromya_new.asp ***


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05/12/2008 22:01
malaluka
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Hi again and yes you are right about the support groups,there is a lot of whineing and it can be very depressing,I guess it's what you make it really.

So that is one of the reasons that we come on here,there are people who support you,people who make you laugh and some who's stories want to make you cry,as for trying to educate people they have to want be educated and some people just don't want to,which is their loss.I guess I'd better stop raving on I hope you find a way through the fog that is Fibro and remember rainbows appear when you least expect them.

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