Screaming inside!

I know some people just may never understand what we go threw every day having fibro, but I really feel like I have no one in my life to talk to anymore. I have had a very long bad day today a lot of sciatic and rib pain as well as major fatigue I took a little nap for all of about 45 mins and the minute I mentioned that I layed down to my own mother she was just down right nasty saying I don’t wanna hear about you laying down!! Like really thanks mom. My fiancé I don’t tell him much anymore as far as pain or anything cause when I did a few days ago he asked me if I wanted some cheese! Basically saying do I want some cheese to go with my whine. I know it won’t make a difference but I can’t wait till I go back to my dr on December 9th because I’m gonna ask him for a letter stating what I have cause I still feel like they just don’t believe me or care. I don’t want pitty from them just don’t want to be treated like this. Does anyone else have these issues and if so what are some ways to help cope or work threw these problems?

Never feel like your alone. I have this problem on a daily basis with my own family. My husband was the worst but i have seen a change in him recently. Education is the big picture here even if you have to repeat yourself daily. There are days i feel like purchasing a fibromyalgia poster and hanging it up for all to read, then this way they do not forget that we have a real chronic disease. I hope you have a better day.

Hi Nicole,

Oh bless you, it's so hard isn't it, I suppose it's not easy when we look well for others to really know how we feel.

If they just had ONE day of how we feel, attitudes would change.

The only people with fibro I know are all of you here, I have no face to face contact with fellow fibromites, there is a support group just over an hour away from where I live but they meet between 2-4pm and 7-9pm every other week, my pains and fogs are dreadful in the afternoons and I don't want to drive into London or use the tube at night, so I don't go, a morning one would suit me fine but I can't find one.

So I rely on all of you here, but I have to say my family are very supportive, I'm just so sorry that you get comments like you do from yours.

When you go to your docs appointment, perhaps take your Fiancé and Mum with you.

When I was first diagnosed I was issued with a fibro fact sheet/booklet, I made several copies and gave one to my Husband, Son and Mum to read, which they did and I had a very positive response from them.

Sometimes those that don't have it don't understand, so some info might help them understand what you're having to deal with and cope with everyday of your life.

Much Love,

We're here for you

Love Lucy xx

Have you tried to take your fiancé or your mom to your doctors appointment? I hope your fiancé will go with you and understand what is going on and what can help you. Your mom may feel frustrated that she cant help you.

Letter to Healthy People from Those with Fibromyalgia & Chronic ... - About - News & Issues - I know you don't understand what it's like to live with fibromyalgia, chronic fatigue syndrome, and chronic illness in general, and I hope you never have to

Hey if this want take you to the site go to the blogs its under the fibro digest. Hope it helps

Thank you so much everyone just been a bad couple of days. My fiancé has gone with me to appointments I just think he still doesn’t understand how real it all is.

I'm sorry things are so frustrating for you!! I think many of us know just how that feels - my parents treated me like I was a two-year-old who didn't really get hurt but cries like it did for the attention of it. Seriously pissed me off! My mother didn't like hearing it at all.

Here's a documentary my husband came across think it really helped. Also these articles that are to help explain.

I think because it's hard for most people to wrap their head around. They don't understand what the "big deal" is. Sometimes they still don't get it, others do because after adjusting to things over time they eventually grasp some idea, or at least understand better how to response even if it doesn't make sense.

Hardest part - in my opinion - is that it's an "invisible" disease and unlike cancer or a broken bone they just have to take our word for it. People tend to have a strong resistance to being manipulated or taken advantage of and if someone looks like their alright or that they should be, I think subconsciously it really strikes that nerve. I think to we can also do ourselves a disservice, because we hide some much of it - than again when we show it were often met with opposite of some kind. Totally sucks and can be extremely frustrating!!! Sometimes I want to smack people aside the head, figuratively speaking, and ask them if they think I LIKE any of the things I complain about or can't/don't do or so on and so on. Sometimes I just want to scream, HELLO of course I don't want this!! And it's an absurdly ridiculous to think I would go to so much work or what have you just to get some attention - not to mention it's pathetic if they really think about it. We're not toddlers for crying out loud. But people who don't experience it don't seem to ever have the idea cross their mind.

Other's I think just don't care or have the patience for it. It may not matter what the problem is - there a gonna give you crap or what not for it cause they don't want to deal with it. Can't help, but wonder if subconsciously they think if they just ignore it or gripe about it it'll go away - they can't or don't want to deal with it. Other times I think it's a stress management thing, it adds more than they can handle to their plates or they just don't manage it well period.

All that said (sorry for rambling) I totally get just wanting to scream!! It's taken a LOT for me to accept this and a lot of understanding from my husband. Still sometime though life gets tough and he's lashed out at me. He always feels like crap afterwards, but when it does it really stings - even if I know it's just the stress. Still it's taken many years for him to really get it - partly because we didn't know what the heck was going on with me and partly cause there wasn't much out there. It's a hard adjustment for us, but it's a hard adjustment often for them too. It takes time...

Anyway, I hope things get better for you and I hope the links are helpful!! My husband said the documentary did a lot for him, but we've researched a lot and he's willing to get educated and make the life adjustments.

Big, warm, gentle *HUGS* Hang in there! We're here for you!


It is such a non-descriptive medical problem that nobody has concrete answers, heck we who suffer, don’t all have the same symptoms. No wonder the average population who doesn’t have the condition doesn’t understand. My own husband gets discouraged when I spend 3/4 of my life in bed. He stays in bed as long as he physically can, and is trying to remember that I’m having a bad day. But unless someone actually has the illness, they truly don’t know what one is really feeling. If you want someone to chat with frequently I would be happy to be your person. Good luck with your family. About all you can do is love them and try to educate them, but they will more than likely not understand. Sorry.

Nicole - I think we all can sympathize with you because this happens to most of us. This “invisible” illness isn’t viewed by friends, family, coworkers or people on the street because we look normal. That always confuses me, as we limp into the room or stumble up a curb or taking 5 minutes to curl back into the car!

I saved this link awhile ago, not only for the beautiful graphics but how it reads. I hope you are able to share it so they may understand what you go through daily.