The NY Times Fibromyalgia Article: Reviewing the Controversy

Mr. Rowe

It's such a pleasure to meet you.  I'm a member here and at the APF.  I cannot tell you how greatful I am for all that you do and all of us you have allowed to study and learn about our pain, treatments, and the validation and understanding you have provided for the masses.

Your a hero for so many pain patients and your kindness and support has been amazing in my own journey through pain.  The APF was the very first Pain site that I ever joined and what I learned there has made an incredible difference in my ability to communicate with my doctors and speak the kind of language that they seemed to understand.  The APF was responsible for teaching me how to get treatment and I've carried what I've leared there to other forums and sites like CareCentral so I could share what I learned and help support others who are in the same shoes I was in four years ago.

Your appearence & participation here, confirms my own thoughts that the Chronic Pain Connections is also a great site site and has many great opportunities to communicate & help all of us who suffer with Chronic Pain.

Thank you Mr. Rowe

Betty

I'm really fearful when popular media decides to spread dangerous notions around to the masses. There are many people out there that take such periodicals seriously, gospel truth at its holiest.. Even if there is a published retraction with or without apology.. usually those types of people don't care. They shrug it off as people being "PC".

I understand that there are some folk out there who think they have fibro when they don't - Net diagnosis is a dangerous double edged sword of our times. But it's better to believe 10 people who are faking than deny one person who is truly suffering from getting the help, treatment, and support they need.

People like to pidgeonhole others into neat piles, it makes the world more simplistic and comprehensive.. Although that can be a positive thing: such as not letting convicted rapists run daycares.. that's a good pigeonhole. The bad hole that us Fibromyalgiacs get is usually: Fake, Lazy, Wimpy drug addicts and hypochondriacs. It's much easier than thinking millions of people are out there with an extensively complex chronic illness filled with pain, odd systematic symptoms, and elaborate regimens of pills to keep them living tolerably.

Newsmedia like the New York Times should be more socially responsible, and not think so highly of their audience as to assume they'll give FMS sufferers a fair trial. In this world of work related depression, it's so easy to dump on people who can't work, who need to stay in bed and relax all the time. Media, especially newsmedia and documedia need to put themselves in the place of the folk they're talking about - and understand that such an article can damage on a personal level. Not to metion research donations..

 

Anyways, I had to write. Hugs, Em.

A new internist unfamiliar with my past problems of medication side efffects put me on Lyrica 75 BID.  I developed asthenia, disorientation, and almost completed suicide.  Nasty drug for me.

 

But I'm glad that many people can benefit by it.

 

Actually, BusinessWeek has the best medical articles outside of peer review journals.

 

I remember working in Emergency Rooms that put any person coming in with a "pain without signs" problem immediately placed in a database of drug-seeking behavior which was shared wih other hospitals.  Today, I'm seeing more of an open mind with many doctors regarding pain relief.  But since many MDs are pretty anal-retentive and admittedly worrying about anything happening to their licenses, it's still going to be a long time before chronic pain problems are treated with any respect.

   As always you keep us aprised of the general public & the powers-that-be's perspective & motives & actions toward us patients.  Thank you.  I wonder if the writer or anyone involved in the  NYT had cancer, diabetes, or other invisible or semi-invisible illnesses whether or not his or her viewpoint would be so negative.  Do we negatively judge a diabetic for taking insulin or an asthmatic for using an inhaler?  Why then, just because non-chronic-pain patients cannot measure our pain, are we judged for taking medications or other treatments that help us?  Hm, maybe i just answered my own question.  I decided a few years ago that I was tired of hiding  though.  Although I do have to admit that the last 2 times I attemped to work I did not originally disclose my FM & other illnessses, not until it got to be unavoidable at least. Once again, thank you.

I live in a 10 story high rise for the elderly & disabled. My neighbor and first and best friend in the complex was on disability for some mental problems. She also had fibromyalgia and had tiny lumps in quite a few places on her body. She had come up with some pretty wild ways to get rid of these 'lumps' which involved some kinds of fruit oils, massage, etc. I honestly didn't know what she was talking about; I even went to a fibromyalgia chat room to try and understand what she was going through.

 

With out warning, she came over and asked me to get her male friend on another floor who had no phone. She said that the doctor was going to call her back about her having cancer which had metastisized throughout her body. I was taken back by this, since she had never mentioned anything like that.  I did as she asked and found out the next day that she had cancer throughout her body and had maybe 3-4 months to live. I was shocked! She had been doing so well that she barely used her cane, and almost never her wheelchair (she was 47). She moved home with her parents a week later and passed away in a matter of weeks.  I always wondered if her doctor didn't assume that with her mental issues and fibromyalgia that those lumps were never investigated at all. Maybe the doctor thought she was just fantasizing about her condition, that we'll never know. What I do is that I lost a wonderful friend who just a week before she died told me that she felt so good she just couldn't understand how bad her condition really was.

 

I just hope that her doctor and others like her will take the complaints of people like my friend and follow through properly so the world won't loose another wonderful woman at such a young age.

 

Char

I have been living with Fibromyalgia for 2 yrs with unstable spine,spinal stenosis,grade 3 l4 to s1 protruding disc,and ddd.I am miseraable.My body aches and people here in kentucky look at me like i am crazy.I cannot get help and am loosing ground.10 yrs is enough.Is the stiffness and achiness the promamry symptoms?Neck pain.And tell me how to get past the doctors and them telling me take advil twiced a day....As you have pointed out in this NY article here in eaSTERN kY WE ARE REALLY LAGGING BEHING IN NEW DISORDER.But am coming up from the diaorder with no name to Fibro:::::.Am up fpr any helpful advice am recieving 3 lorcet 10 a day and lyrica and as i said im so angry  and soo tired