Blue,
I am fortunate in that everyone from my hubby to my friends have been supportive. When I was first dx'd, I was eager to get as much information as I could find to try and understand this illness more. In doing so, I was sure to share some of the pertinent info with my husband and with my kids...the ones that I wanted to understand me the most. I did not give them long, drawn out articles or books to read, but just tidbits here and there. I also shared the spoon theory with them, which stuck, as to this day some of my kids will ask me how my spoons are holding up, when visiting :). One last thing that I believe helped was to show them some posts here at ds to show that some things that seem unusual to us are actually very common in the the fibro community; sort of like it's not just me... which was how I felt sometimes before I found this group!

I've never talked about it much with my friends unless they ask, but they have always been supportive. I have made some new friends in my local support group as well.

I've been very fortunate to have a spouse who has always supported me in everything, and this is no exception. He proofed my book and lugs stuff to my support group meetings, encourages me to take care of myself, and is my best friend.

I don't know how anybody does this without support.

My husband's support has grown over the 4 1/2 years I've been diagnosed. At first I felt like I couldn't talk about it around him or complain about how I was feeling, b/c I didn't think he wanted to hear it. I think since he's been retired and sees me all day everyday (pretty much), he has come to realize how this has changed my life. Plus it's affected our marriage.

He also shared with me how he filled out the disability form where he documented my activities day in and day out. He wrote on there that he couldn't imagine what it would feel like to be in pain everyday. This was priceless to me.

I'm kind of like sunsetzzs in that with my family I didn't throw too much info at them, but a little at the time. They've been very sweet about it all and believe me, b/c like my husband, they've witnessed how it's affecting me.

My friends have pretty much all been sympathetic and caring about it. I do share with them how I'm feeling, and they also see how my life has changed b/c of this. I know I'm very fortunate to have such support surrounding me. Of course, I still would rather come here and talk about it, since you guys experience it firsthand.

Elizabeth

For me, my hubs wanted to understand right from the start. When I got my dx, I read about the clothes pin test. I did it to him and he lasted about a minute.
I asked him to wear it just 1 minute longer. Tears were coming down my eyes seeing him in agony. Then I removed them and I told him that I'll never be able to remove my pain. He got it, or the best he could at the moment.

Through out the years I've learned that he's a fixer.
When I'm down...he wants to fix me. So when he tries, I encourage him. It's the only thing he knows how to do. But I've learned that he can only handle about 1-2 repeated failures, then he gets frustrated too.

This is the biggest reason why I push through my pain. That and my kids needs.

But since my dx 5yrs ago, my hubby has had moment's of comparison. And I know in his mind, he is honestly doing nothing more than a comparison. This is endearing to me that he even thinks of me when he is in pain or suffering from something at that moment.

This past year he's had his first situation of chronic pain in his shoulder. He finally understood what chronic meant.

I love my hubby for always trying, always caring.

For my other family members, I rarely talk about it. It's taken my mom this entire past 5 yrs to relate with me. She's a 2 time cancer survivor, bone marrow transplant recipient and has the body of an 80yr old. We have similar pains, and besides my fatigue spells...I most often have more energy than she does...Thankfully!

We don't talk about Fibro much. I also had a cousin recently dx with fibro as well. And I've been nominated apparently to be the poster child for Fibro in our family. So when that topic comes up...I just encourage my cousin to do all she can.

Otherwise I don't mention fibro to anyone. I've learned that my sister thinks it's a wastebasket dx, she thinks I should be holding down a 40+hr job, and taking care of my kids (w/ special needs). And I really don't want to hear what my brother might say about me not working. Right now he thinks we're getting by on my hubby's income. He's a "gotta work to have a secure future" kind of guy and expects the same from everyone else in the world.

The rest of my family, well, they all just think I'm a stay at home mom. That's good enough for me. And I have honestly no idea what my hubby's family thinks of me and my fibro. Never gave that much thought.

I did reach out to my friends when I was about a year maybe a year and a half into my dx. I wrote to them because I was feeling guilty for not making it to events/ functions. My best friend now has a sister in law who has Fibro. And given the attitude she has against her, (drug seeker, liar, digging her little brother in to a hole) I do not discuss it anymore.

I guess you can say I've been down that road before and if someone doesn't want to hear it....I don't waste my breath.

My friends have been very support. My sister is great, my brother is starting to get it after I sent out a blanket email with one of the letters from here along with my own additions to what my life has been like since last February. Overall, my people have been great.

I do have support from hubby... but my family has not.. in fact they do not call or come around anymore... my parents are clueless and just think I am lazy.. and do not want to work.... I do not even try to explain myself... and I rarely take any phone calls.. Nice to have a message system... they can all go flour their damn asses...

First of all they need to be willing to listen and to do everything in their power to understand Fibro because it's so difficult. I bought a book called Fibromyalgia for dummies and I thought it was going to be a joke but I'm telling you, I recommend it to everyone and to all those that don't have Fibro. I got so much important information from this book. and it wasn't expensive either. Maybe that would help. Hugs GB

Mom and hubby are supportive, but Mom was a nurse and knows many illnesses that are "not real" are actually very real when medical research catches up to reality. Hubby had to be dragged to the rheumy with me a few times and boy did that work!
I don't discuss it with friends other than DS. They just lapse into "oh well yeah my back aches too now and then" or similar and it's not worth it. No, wait, I lie. Unintentionally. I can say ANYthing about this to a friend with a spinal injury---he totally gets it---but yeah, that's about it.

Cheers, y'all.

My family doesn't understand all the ins and outs of FMS, but they are as supportive as they can be. I still do way more than I should, flare often because of it but try to work through it. Add all of my spinal conditions in there and it really becomes a struggle some times.

I'm a very independent person and it's hard for me to let something go, like sweeping the floors, and letting someone else do it. Asking for help is just something that I can't bring myself to do yet. I'm sure the day is coming and I'm afraid that if I start asking now, I won't have anyone to ask when I really need it.

Gramybear is right. Fibromyalgia for Dummies is the best book I've found that breaks it down to where my daughter can understand what I'm going through. I have recommended this book to a lot of our newcomers as well. I'm am very grateful that gramybear told me about it when I first came here. Bless you!!!

I pray that one day this painful condition gets the acknowledgement from the medical community that it deserves and we get the treatment we need without the government stepping in to deny it.

Warm Hugs,
Nancy

Thank you for your comments! :)

I enjoy reading all the different ways you all have used to win over support from misc people in your lives.
My husband is pretty supportive (and so is his family). Even though they don't really have chronic pain. But my FIL has diabetes and it effects his life pretty drastically... they had to live their whole lives around his illness, so I'm guessing it has helped them become a little more compassionate. Also, my SIL was born deaf and they had to live their lives around making adjustments for her "disability" as well.

So, when I gave my husband a book (back when we were dating) about fibromyalgia he was pretty to open to reading it. He was shocked at 1st once he learned all the gloomy details about it and was scared to pursue a future with me but after I took him to a few of my chronic pain appts he came around and decided I was the woman for him and that he would do everything he could to be there for me. :)

My siblings (3 brothers) are supportive for the most part..... except the one I'm not so sure.... he believes in fibromyalgia, but at the same time isn't very compassionate and gives me such a hard time.

My mom lives with us and has a few of her own health issues. She has suffered from multiple broken bones & fractures over the years due to osteoperosis and has recently been diagnosed with a mild form of lupus. She has had a few other things happen over the years but that's just to name a few. In the beginning it was a struggle to get her to understand. She was very stubborn and incompassionate during my flares. Sometimes to the point she would wake me up & yell at me for sleeping all day. But one day she started going to the library and read books about fibro and then became a little more understanding.
Now a days, she is understanding when she wants to be.... only on the days she is either in a good mood or out of the house doing her own thing. Other than that, if she is home and wants to go shopping somewhere she will bug the heck out of me to take her because she can't drive. Or if she is in the mood to clean the house, she may bug me to help her and may become irritated if I'm not feeling well that day. It all depends on her mood. Sometimes she will feel supportive and other days not so much.

As far as friends go... almost all of my friends are veterans or spouses of veterans and they usually have a form of chronic pain. They all know I have fibro, but I dont talk about it much. If I need anything I can call them and they will come, and they can count on me, too. We are usually understanding if one or the other can't make it to each others gatherings / events. I'm so lucky to have friends like them. :)

Wow, I feel really crappy now, . I feel so jealous of all of you to have such wondreful supportive families. I wish I did. I have been tald so many things like your faking it, eveyone has some pain deal wth it. It's a mind thing only weak people have problems. and many , many more. I would gladly go with you blue sun. I have one friend not on here who supports me. That is because she has IC and leukemia she has no support and no family and has never been married. She is my best friend in my life. I don't even know how to answer that but to say I hope you all appreciate what you have. I could tell you stories to curl your toenails.. But I also want to say THANK YOU to SO MANY WONDERFUL PEOPLE. i HAVEN'T BEEN HERE LONG BUT I HAVE BEEEN TREATED SO GOOD. I NEVER KNEW PEOPLE COULD BE SO NICE. I SAY THERE ARE ANGELS AMONG US. Thank You all Seriously. (isabee) bella

Thank you, isabee. :)
I wanted to post this so that people can read and see if there are any tips they can gain or something they want to try.
For example I have never tried the clothes pin thing, and now I know I should try it whenever a family member does give me grief. They aren't perfect, trust me. My husband has said things to me when I was really sick over Christmas break with the stomach bug going around, and I was up all night hugging the toilet and sitting on it while he slept the night away. And I wanted to put my hands around his throat if I had the strength at the time, for being a doofus. So one of these days I'm gonna put like a dozen of those clothes pins on someone! LOL

I just started to ask, was there anyone that DONT have support? My husband of 12 years left me for a younger, healthier woman after me becoming so ill. So, I am alone. My daughter, sisterinlaw and one friend understands, but not others. Most don't want to, or don't want to research it, or don't believe in it! Recently I have tried to figure out how to do things so i wont hurt myself more with just having hernia surgery but its hard. Anyway, count your blessings if you have support!

My only sister thinks fibromyalgia is something fat girls get... sorry skinny ladies and men... ive tried to convincer her otherwise but she says shes only ever known fat females to have fibro.
My husband is super supportive.
My mom tries to understand and is supportive of my limitations.
My extended family and husbands family, we just tell them I have a bad back cuz its just so much easier to say that and to not deal with any naysayers.
We dont do much social gathering things. Im always tired and hubby works a lot and works bad hours so our lives dont really allow for being social, especially during normal ppl hours! LOL

It wasn't always like this for me gypsy....

The relationship with my ex was very um... well challenging only begins to describe it. "Up hill" battle is more suiting. The 1st year or 2 he assumed I was a hypochondriac and constantly tried to convince me to seek help for my "disorder". To make matters worse, he told his side of the family the same story, so I had to hear it from them, too. then I finally got him to start going to my chronic pain appts. So he believed it was real condition. But then after that, his story changed to telling people that I'm plain CRAZY and should seek help immediately. He told all of his family and all his friends about it. Every time we had a huge argument (which was every other day) he would whine to them about what i said or did and if I tried to call them back and tell them the truth, they would tell me to "go get help".
Eventually, while I was having back to back flares, my ex left me. I was very angry with him but actually glad he was out of my life.

I realized back then, that allowing negative people to stay in my life was very toxic and bad for the fibro. So I had to make the decision that if they were not supportive I should cut them out. And if they are family, then try to do little things to help educate them. If they still want to be ignorant, then count my blessings, and ignore the ones that don't care about me. I men if they are family you can't sever the relationship but you can limit your contact. It sounds selfish but you have to do it if you want to stay healthy and be able to care for others as well.