Two strange pieces of advice I received.

Ho Donnaeil!

Those would be funny if they weren't sad!! My guess would be that most of the times when we hear stuff on TV or online it's because they have something to sell. The "Fibro Cure"...It's Magic! and my favorite... The SECRET that not even your Doctor knows...lmbo.

There is some validity to the idea that if we concentrate on something else that we feel less pain, but that doesn't mean it's gone. It's the old childbirth thing that started in the 50's and took off in the late 60's. Concentrate on something else and you don't feel the pain. The pain is still there folks! (talking to those who don't understand us)

I agree that fibro gets no respect. But just wait until one of them gets it and their tune will change mighty fast. Maybe part of what I don't get is why isn't there any empathy? One member on the Chronic Pain forum puts it well... each person's pain is individual. If you say you hurt, then you hurt! end of story!! How do I have the right to say you don't??

Great thread Donnaeil!
Chutzie

Fibro is the Rodney Dangerfield of the disease/disorder world.

This knowledge (which I've been keen on since the beginning, pretty much) really gets me all riled up and makes me want to go on one of those feminist-infused tirades I used to be so well known for. The only problem is I'm too tired for that now.

I don't know why Dr.'s/family members/friends and sometimes even strangers don't give us the credit and empathy we deserve. The best reason I can come up with is ignorance. People are really ignorant about fibro (I know I used to be) in the same way that people used to be really ignorant about Depression and HIV. Hopefully, with time and research and more knowledge, it will get to the point, both in the medicial field and society at large, where fibro is finally understood and respected as a real dd and we fibro-mites will get the respect we deserve!

And to think, all these years of pain, and all I had to do was just stand up straight........

 

Donnaneil, I'm glad you are back at the pool, and I hope your fibro pain stays in remission for a good long while. 

 

Chutz, I believe that one of the reasons fibro doesn't get much respect or receive much empathy is because it mostly affects women.  The words hysteria, hysterical, and hysterectomy all derive from the same Latin "hystericus" and Greek "hysterikos" root words, meaning "of the womb." For centuries most diseases that mainly affected women were were thought to be all in our heads or somehow tied to our reproductive systems.  Even today, many female heart attack patients don't get proper treatment, and some are even sent home with a diagnosis of anxiety.

 

Unfortunately, women's health issues just don't receive as much attention as those that affect mainly men.  I think all of the focus on breast cancer is starting to change that mindset, though, and I hope all of the pharmaceutical research (even though I hate the Lyrica commercials, lol) will bring more credibility and compassion for fibro.  One can hope. 

Hugs - Austen

I was diagnosed with FM 20 years ago and for so many years, I actually felt some shame or embarassment; I basically told no one, except my immediate family that I had the DD. At the time, I was an exercise nut, swimming in the morning, at 5:30, before going to a full time job and then going to karate at night, 4 nights a week and Saturdays and sometimes a double class and if I didn't swim in the morning, I was doing a stairmaster machine and then FM  hit. Oh yes, I was also walking my dogs 5 miles, again before work...did that when I didn't go to the gym, which was about every other day. My sister whom I was very close to, was my exercise partner and we pushed each other. I remember not being able to keep up with her, walking more slowly and she refused to give in to me or the DD, she would actually walk ahead of me and keep yelling "keep up". This went on for months...how stupid was I? It wasn't until the Lyrica commercials came out that she seemed to have an understanding of the disease. I really believe all this time, she thought I was just a complainer. What I don't understand is, why would someone think that way, when I was such a lover of exercise before FM? Why would I change like that, for no reason? It's been 20 years and I still don't understand why people have no respect for FM. Yes, I understand, they cannot "see" it on us, but you'd think our words would be good enough.

gentle hugs

Miriam

LOL, Marlee, yep.....just stand up straight and all the pain will be gone.
Yeah, right. Dont we all wish that. I would love to find a place close by where there is a warm water therapy pool. I use to belong to a fitness club, sponsored by our hospital, but had to give it up because I couldnt do the exercise machines. They had a great warm water pool there, and I loved it. Wish they would let me use it, just as needed, and I could pay them for each visit. but they wont. If Fibro could only be as easy as standing up straight.......wow what a cure!!!

Hugs
Sue

Wow, a cure! I am going to sit up straight in my chair here at the computer desk and not think about my pain- who knew it was that easy!!    I would have done this a year ago if I would have had this information!!

GamJill

Oh my, paracites. Then there are the folks who tell me I have an HPV virus roaming around in my body. No problem, tested negative.

The YMCAs and YWs all have pools that are too cold for fibro. As is I swim in 85 degrees and I still have to take a hot shower to acclimate before entering the pool. I long for a small pool of my own. I would keep it at 90 degrees and it would have jets.

Oh, it would also have internet hookup, a DVD player, someone named George to make my dreinks...you get it.

People continue to tell me not to bring the pain back on myself. One would think they knew me enough to know that if I had control of this syndrome, I would have felt better long ago. Oh well, I should know folks do not change. My brother still asks me what I have after all these years; the insensitive idiot.

I am glad that all of you realize that if I did have a cure, I would share it, pronto. For free even.

Donnaeil

LOL !

You guys are funny.

It's sad too because it's true - one of the first people I told said "it's a junk disease - take 2 Aleve with coffee every morning and you'll be fine. you get a little older, get some aches and pains , lil depression once the kids get older"

Took everything I had in me and prayers to heaven to not punch her right in the face and then give her 2 Aleves.

I have a FIVE year old - hello ?? I'm 42 - sorry , but I don't consider that old !!

You know, now that I think about it - when she said that....I stood up straight and thought about causing HER pain which totally took my mind OFF my pain - and I felt a lil better when I dismissed her comments as condescendingly as she had mine !!!!

 

Ooooo, let me know when you get your pool Donnaeil, I'll be right there??? Make sure George can do gentle massages.

 

Since I didn't meet anyone with fibro, except my SIL that dxd herself, before I got it I don't know how I would have reacted to their symptoms. I guess most people do mean well they just don't have a clue and than there are those that have heard the negative opinions about fibro that believe what they hear.

 

Patti, I will have to try and remember your come backs to people.

 

luv and hugs

Marlee

Omgosh! you are all hitting the nail right on the head. I can't count the number of times that I have heard, "it is normal to have some aches and pains as you get older." I, too, do not consider 44 years "older," especially since some close friends who are 60 and my mother in law all can walk circles around me!

I do agree that thinking about the pain makes it worse . . . but not thinking about it does not make it go away, but it does help to deal with it. Even a constant low level of pain that can be mostly ignored can wear a person down considerably. Then when the pain is bigger, it is difficult to ignore.

Anyone ever been diagnosed as having Somatization disorder before you got your Fibro DX? I have been reading all about that one. Comes down to my subconscious conflicts and bad thinking is making me physicaly sick. Aches and pains everywhere, digestive problems, chest pains, anxiety, depression.

I thought the funny part of it was that everything I read on it stressed the point to Doctors to take these physical ailments seriously. Even though they wouldn't find a cause, the ailments were quite real and the last thing they should do is tell the person its all in their head. Although they classify dozens of different types of Somatization disorders, the favorite one of course is Hypocondria. So that means Hypocondria gets more respect then Fibro, at least in the journals and literature on how to view it and treat it. Not that Doctors can read anymore. Now, thats sad.

But the bright side is the treatment for it is lots of drugs. Just take your big doses of Amitryptilene, Benzodiazepenes, Neurontin, Opiods, SSRI's or MAOI's and all should get better, or all should turn into such a great big fog you don't care anymore.

Oh, and stand up straight!!!

I would really like to say: don't eat for a week, don't think about food, see if it goes away. Gesh.