Yes, their response is common. And lot of health care providers act the same way. Like it's nothing. All I can is don't try to convince anyone in your family. If they care about you, they will be supportive. If they lack empathy, just don't talk about it to them.

My father, who had been a medical reporter, had read (6 years ago?) an article in the New York Times (his bible) which cast doubt on the fibro diagnosis, etc. So, when I told him that that's what my rheumatolgist said I had, he said, ''I don't believe in it.""

Of coure it hurts. But you know and we know how severe it is. Again, sometimes you have to let go of people (at least a little) and not let them in to your new (fibro-) world because you NEED support understanding and confirmation. Try to surround yourself with friends who get it, medical providers who get it and perhaps one family member (I hope you find one).

It's hard enough as it is. But that's because it's a primarly female diagnosis and of course, we aren't taken seriouslly. What? Yup. If men got 95% of the fibro cases, you betcha the attitude would different.

Hang in there....

I understand the hurt that goes along with it. But after experiencing it myself, I have come to the conclusion to not put so much weight on their understanding.

There are things for them (if they choose to read or try) such as reading the spoon theory or doing the simple clothes pin test. (that is where you place a spring loaded clothes pin on their first digit knuckles and ask them to wear them for just 1 minute.
When I tried this with my husband, he could only make it for 30 seconds before he was begging to remove them. I then asked him to go another 30 seconds. By the end, he was squirming and as I removed them I reminded him that I can never remove my pain like he just did.

I have some family who believes in it, and others who don't. I've learned to let these comments roll off my back and take them for what they are worth (a genuine effort to help me). Even though I know that they don't work.

And that is the reason why I have been coming here for so long. I have my FMily here who understands and does not judge. And having that support means so much to me. And I don't place any expectations on my family. If they want to know more, they will ask me. If they don't want to, then that is up to them.

Oh and I also learned to limit my complaints and grunts and other sounds I make when I'm in pain. At first when I would try to discuss it, it became too much for my husband to hear. He wanted to fix me, but didn't know how. I gently reminded him that even the doctors couldn't fix me, so not to worry. But later, I got sick of listening to myself. So I stopped. Hearing myself complain daily got me no where. And it was a constant reminder that I am in pain. So I was done with it. And my hubster, well he learned to read my body language quite well. Now, he asks me how I'm doing vs me telling him. And even at that point, I only give him the 30% truth. It's the only lie I ever live with. Not telling others how I truly feel with this pain.

I've had a few family members role their eyes and tell me to fight through it or get over it (because I must be exaggerating, right?). It's taken years for my husband to fully grasp what I've been dealing with. The people that understand the best are the ones that have been through the same thing. Sorry you have to deal with this

Unfortunately, that seems to be a pretty common response. Fibromyalgia is recognized by the Centers for Disease Control, the National Arthritis Foundation and the World Health Organization.

If you don't have a copy already, I recommend the book "Fibromyalgia for Dummies." It is available on Amazon. It will give you an excellent overview of this complex illness. It is also a useful tool for educating family and friends.

I'm sorry that you've been treated this way. You are not alone.

"It's the only lie I ever live with. Not telling others how I truly feel with this pain. "

Wonderbaby said it. I hold it in because it's too hard for others to hear.

Melanie, I feel your pain. It is bad enough that we have this condition. It only makes it worse that we are not believed.

I have often thought about this and I believe one reason we are sometimes not believed is because it takes so long to be accurately diagnosed. Our friends and families hear for months (or years in many cases) how our medical test results don't show anything wrong. So they all assume it is psychological.

After we get diagnosed, that assumption sometimes does not go away. Sadly, we've already been put in a box by the people around us.

Thank you so much for all of your thoughtful replies. I am already utilizing your advice and just letting their lack of empathy roll off my back. If and when they want to talk to me about the diagnosis and what's to come then I'll be there to answer their questions. In the meantime I am working with my doctor to set up a treatment plan and I'm going forward (for the first time in a long time) with my life. Luckily my sister has become more supportive. We had a heart to heart and I am thankful she is trying to understand what I'm going through. I think I will use the spoon theory on my father if the opportunity presents itself. Thanks for the tip Wonderbaby and Shakota6 I am taking your advice to heart and letting go of one friendship that has cost me so much emotionally. Definitely going to get Fibromyalgia for Dummies. Again thank you all for your replies. It is such a comfort to know that there are others out there who understand what it is like to live like this.

Just lately, I've been saying that "I have a central nervous system illness"., it's enough said. They seem to understand, as I tremble a little and have balance problems. Sometimes, I'm a little twitchy. One person tried to understand and could not, so I told her that even my dr. had problems understanding it!

I am so sorry to hear this, and sad as it is, it does seem to be common. My siblings became downright mean about it. I eventually had to move away and get far away from them.

Resonding directly to your OP, Melanie....

Get them a book called Fibormyalgia for Dummies. You'll enjoy it, they'll need it, and frankly, I've had a comeback for the "I don't believe Fibro is a real disease " attitude for the 20 years I've been diagnosed.

Once, people didn't believe the world was round and didn't believe in germs. Yet, both were proven fact.

Even Dr. Freaking Oz changed his tune. If that guy can, anyone can. IMO.

Hang in there. It's a neuromuscular condition, the Mayo Clinic acknowledges it, the CDC acknowledges it, so if it's fake, why does the CDC and World Health and National Health (UK) all have diagnostic criteria and treatment guildelines?

Irony being, one person who said my FM wasn't real wanted me to get an exorcism for my epilepsy. Seriously?!

I was visiting some family over the weekend and one of them asked me how I was doing. I told them about some of the fibro stuff and how it was affecting me. My wife told them that the doctors think thats what I may have. I pointed out that a rheumatologist diagnosed me with fibro. She seems to be having trouble accepting that its real. Also, if by some chance it is real, that I can have it.
I do feel for everyone having trouble with friends and family not supporting them.

Kel

I am a nurse and I see many people who on their health history say they have fibromyalgia. I am not one to question whether they do or don't. I will just give you my perspective why your loved ones perhaps are insensitive. First it is their misinformation on the condition. Firbromyalgia typically doesn't have a cause and there are no specific tests. It is usually diagnosed by ruling out other causes such as RA, Lupus, MS etc. People are often depressed (as they should be because they hurt) and sadly not to "label" people but they can be needy as well. Some people think they are hypochondriacs. It's hard for some to see a person who looks physically well claim they have fibromyalgia. All you can do is educate those around you the more you learn about your condition and and stay positive and don't let this get you down. Fortunately there are medicines that can help your pain and your mood and hopefully get on the mend and live more comfortably. Best of luck.

You are not alone! There are even doctors and nurses that don't believe in fibro! One time I was referred to one of the best docs on island here and I finally got in to him, he asked me what was going on with me, I told him I had been diagnosed with FMS. He told me straight to my face that he doesn't believe in fibromyalgia and is therefore discharging me from his care! The guy didn't even examine me yet!! And then there are the ER stories I have for you!! UGH!

Anyway, when I was in my last relationship, I pretty much faced the same thing you are going through. My ex was convinced it was all in my head. He said I was a hypochondriac and if I just got treated for the real problem, my made up symptoms would go away. He convinced his mom and his friends (our mutual friends) the same thing about me. So every time I felt sick or was in pain I had no sympathy or understanding. In fact the worse I felt the more he would yell at me. And then his mom would chime in and tell me to go "get help"!

When my mom moved in with me because of her own health problems, she wasn't very supportive either. On days I was having trouble getting out of bed she used to yell at me and throw hissy fits about how I was being lazy. I finally told her to go read some books about fibro. She finally did and it completely change her. Thank God!

So my suggestion is ask your closest family members to read books like fibromyalgia for dummies. maybe even join blogs or support groups like this one.

KNow that we are here for you and you are not alone!