Two strange pieces of advice I received.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 4/1/2009 5:15 PM (GMT -7)   
Hi folks,

As many of you know I am enjoying a pain free two weeks for the first time in five years. Now, the ladies and gentlemen at the pool are excited about this but, I am also having strange responses to my pain being under control.

1. A couple of people have suggested that I do not focus on my fibromyalgia because I might bring the pain back.

Huh! It is as if they believe I can control the pain by not thinking about it. I think this is ridiculous and, it puts the blame of the fibro pain on me.

My response to them is, yes, I am having a vacation from the pain but, I know that the fibro can act up at any time, no matter what I think.

2. Another person told me about t news report on tv that states that fibro is caused by bad posture. the explanation is more scientific than that but this is the gist of it. We are cured when we stop slouching and correct our posture.

Right, again the fibro is our fault.

What is funny is that fibromyalgia gets no respect. People think it will be cured by magic or manipulation. lol


Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 4/1/2009 7:39 PM (GMT -7)   
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!
Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
Happiness is something to do, someone to love, and something to hope for."

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 4/2/2009 12:12 AM (GMT -7)   
This reminds me of a friend of mine who is a nurse. When she worked the labor and delivery she felt that women were just carrying on in labor, yelling for nothing. Up until that time she had planned c sections. Well, when they could not reach her doctor while she was in labor in the hospital after midnight, she learned.

"That hurt," she told me/ "Now I understand why they were screaming."


Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 4/2/2009 4:59 AM (GMT -7)   
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!
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Veteran Member

Date Joined Feb 2009
Total Posts : 686
   Posted 4/2/2009 5:14 AM (GMT -7)   
good grief! everyone is a doctor.....and a bad one too. Sorry this happened to you. I get a lot of "have you tried ibuprofen?" doesn't help (plus it makes me sick). It's our family joke now when I'm really bad off. "How about an ibuprofen, mom?" *slap my head*
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), buspar, abilify, trazodone, lorazapam, nexium, nabumetone, hydrocodone, flexeril, c-pap machine, estrodial patch.

Veteran Member

Date Joined Aug 2008
Total Posts : 1771
   Posted 4/2/2009 6:12 AM (GMT -7)   
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
"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 4/2/2009 6:26 AM (GMT -7)   
Get your mind off of it and stand up straight Donnaeil and you will be pain free the rest of your life tongue I'm so happy that you are getting this break from the pain after the horrible winter you went through.
My niece is addicted to exercise so she thinks exercise is the answer to everything. She teaches water arobics at a YWCA and she has women with fibro in her classes and she would love it if I would get into something like that but I'm not driving 45 min each way to do water arobics. Besides their pool does not meet the arthritis foundation's standards on temp. Owie, just thinking about getting into cold water makes me hurt.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

MT Lady
Veteran Member

Date Joined Jul 2008
Total Posts : 969
   Posted 4/2/2009 6:53 AM (GMT -7)   

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 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


Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

Regular Member

Date Joined Mar 2009
Total Posts : 30
   Posted 4/2/2009 7:54 AM (GMT -7)   
I hate the "it's all in your head" response.

I get it all the time, from friends and family both. Only my fiance is understanding of it, because he sees it everyday.

I always hear "just take your mind off it, just don't think about it so much" (as if not thinking about it is going to make it go away) or "well, just think about how it would be if you didn't have the medication. At least you have that and it isnt as bad now." (false on a lot of days) And the greatest "you're going to have to deal with it forever, just get used to it". That's the worst lie ever. How can we get used to it when it changes so often? I'm still getting new symptoms.

I have honestly gotten to the point where I just gave up trying to get people to understand. I can show them symptoms and diagnoses all day long but they will never understand. And I just keep on hearing "you never hang out anymore", and I have heard it so much I could puke. It's at the point that I just tell people I am sick, and I am not going anywhere. I've just come to the conclusion that no one understands this syndrome until they have it.

Regular Member

Date Joined Feb 2008
Total Posts : 378
   Posted 4/2/2009 8:02 AM (GMT -7)   
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 what a cure!!!

anxiety/panic attacks...osteoporosis....Fibro

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 4/2/2009 8:05 AM (GMT -7)   
No kidding!! I think if good posture was the cure for fibro, none of us would have time to come here and post because we'd all be spending our time walking around with books on our heads!
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 4/2/2009 8:24 AM (GMT -7)   

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!!  idea   I would have done this a year ago if I would have had this information!!


Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
Zoloft, Tylenol 4000 mg., Darvocet  

Veteran Member

Date Joined Nov 2008
Total Posts : 2858
   Posted 4/2/2009 8:38 AM (GMT -7)   

I think the best cause of fibro I got was from a someone in the medical field that said it was caused by 'parasites'.  All I needed was $1000 worth of chelation therapy.  You should have seen me crawl to my nearest chelation therapy center.  NOT!


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 4/3/2009 12:37 AM (GMT -7)   
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 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.


Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 4/3/2009 3:35 AM (GMT -7)   

It all goes back to.... "my fibromyalgia is real .. unlike your imaginary medical experience"

Sometimes I ask people who have all the "answers" if they accept my medical insurance.

Hey Folks... May 12th is Fibromyalgia Awareness Day.  I plan to send a letter to the editor of our local newspapers to, hopefully it'll make people more aware of this DD.  I started writing it a few days ago, but I think I need to tone it down a bit.. I realized that I'm still harbouring a little anger at the DD and the people that don't know what the heck to say or do. 

It all goes back to the theory.. Ignorance is bliss.


Good thread Donnaeil

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Regular Member

Date Joined Mar 2009
Total Posts : 48
   Posted 4/3/2009 5:58 AM (GMT -7)   
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 !!!!

Regular Member

Date Joined Mar 2009
Total Posts : 55
   Posted 4/3/2009 6:31 AM (GMT -7)   
 ok lemme see if I get any of this,,drink coffee, stand  and sit up straight , stick in that tummy, take ibu , and Don't "think " that you have fibro and you will be just fine !!!
or yea also just maybe take one xanax a day.YOU ARE HEALED // I SAY STAND UP //
 yeahh also go to the pool and do a few exercises .You're Healed / i say / Healed //
 Those of you whom have said that you have fibro , yes it's in your head, like dragging
 around a friend who is invisable and weighs a ton. Just throw away that iminaginary friend.
 I say You are healed // so now get up and run the marrathon,clean your house,and work 10 hours a day and also raise kids cause, You are Healed !!! If you start to think that you do have fibro,stop that, think that you are healthy , sit stand walk up straight cause you do Not have pain. You are Healed !!!!

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 4/3/2009 8:05 AM (GMT -7)   
Ooooo, let me know when you get your pool Donnaeil, I'll be right there??? Make sure George can do gentle massages. wink
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
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

solar powered
Veteran Member

Date Joined Nov 2007
Total Posts : 538
   Posted 4/4/2009 1:46 PM (GMT -7)   
I know some people here keep a pain journel. I did that for awhile but finally stopped when I realized keeping one did make me focus on the pain too much. I threw it away and started to physically feel better. I do agree that positive thoughts aren't going to cure fibro or any chronic pain for that matter but for some people like myself changing the focus can change the reality of the pain. I know I do feel better when I have something else to focus on other than the pain. Just my experience. Lisa
Life is the ultimate contact sport. Train accordingly and play hard.

Veteran Member

Date Joined Jul 2008
Total Posts : 1495
   Posted 4/4/2009 2:10 PM (GMT -7)   
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.

Regular Member

Date Joined Mar 2009
Total Posts : 180
   Posted 4/4/2009 3:31 PM (GMT -7)   
It really hurts when these attitudes come from your family. My mom has back pain, and says she "just has to push through to do what she needs to do"...meaning that I could work a job and raise these kids and take care of the house and on and on. And Dad got an office manager who has fibro. And she comes to work even when she has to walk with a cane. Well, that is great! But they don't know what other parts of her life she gives up, or has help in in order to have that job.
So, I am just lazy. And my PTSD and bi-polar?? Again with the power of positive thinking!!
Enough already!! GGRRRRR!!!
I think I have a little anger about these issues.
Fibromyalgia, Bipolar Disease, Post Traumatic Stress Syndrome, Clinical Depression, Arthritis, High Blood Pressure, etc.
Who ever knew I would be defined by my diseases??

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 4/4/2009 5:42 PM (GMT -7)   
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!!!
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 4/5/2009 8:41 PM (GMT -7)   
You all make my day!

Too bad nobody had all these 'cures' when I was a little kid and a walking basket case! If it weren't for the good nuns telling us to 'offer it up for the poor souls in purgatory' I wouldn't have made it through childhood. I figured that at least my pain was helping someone somewhere!

Don't cha just wish you could SLAP some of these ignoramuses who try to tell you how "not to hurt"!?!?!
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

Forum Moderator

Date Joined May 2005
Total Posts : 7519
   Posted 4/5/2009 8:52 PM (GMT -7)   
I would really like to say: don't eat for a week, don't think about food, see if it goes away. Gesh.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, November 24, 2017 2:27 AM (GMT -7)
There are a total of 2,897,372 posts in 318,008 threads.
View Active Threads

Who's Online
This forum has 157578 registered members. Please welcome our newest member, Clotaire.
227 Guest(s), 7 Registered Member(s) are currently online.  Details
Georgia Hunter, Derwent, theHTreturns..., LilaJ, Girlie, Big Tasty, Subdenis

About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow on Facebook Follow on Twitter Follow on Pinterest
©1996-2017 LLC  All Rights Reserved.