Fibromyalgia Support Group
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So the article that was mentioned two days ago was taken down and now there is a new article:
http://guardianlv.com/2014/02/fibromyalgia-proof-of-physical-origins-vs-two-danish-psychiatrists/
I'd love to know what happened behind the scenes to have the one article pulled and this one posted.
However, this psychological hypothesis hasn't died. I pulled this from the NYT from 2008. Dr. Wolfe wrote the new criteria questionnaire in 2010. This is not ancient history.
Excerpt from New York Times
Drug Approved. Is Disease Real?
By ALEX BERENSON
Published: January 14, 2008
doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.
The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.
These people live under a cloud, he said. And the more they seem to be around the medical establishment, the sicker they get.
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
Some of us in those days thought that we had actually identified a disease, which this clearly is not, Dr. Wolfe said. To make people ill, to give them an illness, was the wrong thing.
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.
Most people manage to get through life with some vicissitudes, but we adapt, said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. People with fibromyalgia do not adapt.
Both sides agree that people who are identified as having fibromyalgia do not get much relief from traditional pain medicines, whether anti-inflammatory drugs like ibuprofen sold as Advil, among other brands or prescription opiates like Vicodin. So drug companies have sought other ways to reduce pain.
But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.
The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained, Dr. Wolfe said.
Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are going to make a fortune.
I went through a Kafkaesque experience with this kind of attitude a year ago and I haven't recovered from that miserable experience. I had a PCP for almost 10 years that had this attitude towards me and I didn't even realize it until I got very ill and found no help anywhere. This attitude towards fibromyalgia is still alive and kicking. I wish I had the perfect philosophy for dealing with my anger about this, because I know anger doesn't help me. But perhaps anger is necessary impetus to change these attitudes that do not help any of us.
http://guardianlv.com/2014/02/fibromyalgia-proof-of-physical-origins-vs-two-danish-psychiatrists/
I'd love to know what happened behind the scenes to have the one article pulled and this one posted.
However, this psychological hypothesis hasn't died. I pulled this from the NYT from 2008. Dr. Wolfe wrote the new criteria questionnaire in 2010. This is not ancient history.
Excerpt from New York Times
Drug Approved. Is Disease Real?
By ALEX BERENSON
Published: January 14, 2008
doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.
The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.
These people live under a cloud, he said. And the more they seem to be around the medical establishment, the sicker they get.
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
Some of us in those days thought that we had actually identified a disease, which this clearly is not, Dr. Wolfe said. To make people ill, to give them an illness, was the wrong thing.
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.
Most people manage to get through life with some vicissitudes, but we adapt, said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. People with fibromyalgia do not adapt.
Both sides agree that people who are identified as having fibromyalgia do not get much relief from traditional pain medicines, whether anti-inflammatory drugs like ibuprofen sold as Advil, among other brands or prescription opiates like Vicodin. So drug companies have sought other ways to reduce pain.
But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.
The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained, Dr. Wolfe said.
Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are going to make a fortune.
I went through a Kafkaesque experience with this kind of attitude a year ago and I haven't recovered from that miserable experience. I had a PCP for almost 10 years that had this attitude towards me and I didn't even realize it until I got very ill and found no help anywhere. This attitude towards fibromyalgia is still alive and kicking. I wish I had the perfect philosophy for dealing with my anger about this, because I know anger doesn't help me. But perhaps anger is necessary impetus to change these attitudes that do not help any of us.
I expect what happened was that the Guardian got it wrong by miles, which happens a lot as they are just this side of a supermarket rag.
Thanks for the update. A lot of people noticed that it was gone and wondered what happened.
Here's the 2010 article introducing the new criteria. He is the lead author. It's ironic that someone who doesn't believe fibro exists created the definition for it. The new DSM with widespread pain as a psych condition came out last year.
https://www.rheumatology.org/practice/clinical/classification/fibromyalgia/2010_Preliminary_Diagnostic_Criteria.pdf
My ex-pcp who believes in this bs teaches at a major medical school. He really did a number on me.
And if being around the medical establishment makes us sicker, whose fault is that?
Saying we "don't adap"? Are they kidding? Many of us work, are married, have ups and downs, etc., and weather them fine---we just have this stupid pain thing.
So... basically back to "psychosomatic, grow up, get over it"....
I am in tears over this b/c it's denying so much truth--
1. doctors may have simply failed to find the causes behind the symptoms so they're blaming the patients
2. with the increase of toxins and preservatives etc in diet, air, awter, we may be seeing a new disease emerging
3. even if it is psych in part, that doesn't discount a biological foundation---as with bipolar, etc.
The fact it's out there is what matters, b/c docs are human and read newspapers and online news, too, so will absorb this crap....
I'm not doing well today so I'm signing off.
Why trouble yourself with these musty opinions?
And why go to a PCP who doesn't seem helpful or believing. I wouldn't waste my time.
There is though, a problem for doctors treating patients with fibro---since they cannot cure them, they feel impotent. The best way to come to an appointment is with calm, a short list of complaints.
Try to do your research ahead of the appointment and tell the doctor what you want to try, which drug you feel might work for you. (If you can do this on your own). That can help. A PCP isn't a fibro specialist.
Awww.... Leo! Don't waist tears over this quack! I see things like these all the time, and I just say to them, "Whatever!" I just want to give you a hug!
A doctor is the one who actually brought up "Fibromyalgia" to me. I had given up years ago and was just like, "okay.... I just have to deal with the pain." I even stopped mentioning that I had pain to any Dr because I felt like it didn't serve a purpose. After 24 years of intense pain, a Dr. started asking me questions and happened to ask me the right questions. He told me I had Fibro, but because he was an OBGYN, he couldn't diagnose me officially. It was my GP that diagnosed me as a classic case of Fibro. This was after going through many other tests to rule out the "look alike" illnesses and of course, doing the pressure point test.
Unfortunately, we've been put in the same category as ADHD, a disease that doesn't really exist because A) too many are either diagnosed with Fibro who don't have it or as some other disease when they really have Fibro B) too many quacks like the above article write stuff about our situation that they clearly know nothing about C)Many of us are seeing the wrong Drs instead of Fibro specialists, so we're not getting the proper treatments. D) Drs. just want to give us meds and send us on our way instead of treating the whole person and/or figuring out exactly what the causes are.
Now, I got lucky... My insurance company believes in this disease, has a lot of research on this disease, and has a whole program to treat this illness. I have 4 specialists that I am seeing, and I have noticed an overall difference in the last few months.
We have to be our own advocates and not give up until we find the right person/Dr. who will listen to us. It took me 24 years to do that and years of intense suffering. I completely disagree with that quack above... now that I know what it is, I'm finally getting the help I need.
Not exactly sure how he gets top billing with the likes of Dr Clauw, as most of his research and conclusions fly in the face of other research including Dr Clauw's own.
Grant funding makes strange bedfellows.
We need to bring to light more docs who are looking for real answers. We all have so many similarities. The medical world have not advanced enough and many have no idea what they are talking about. It is their problem. We just have to seek out real help on our own.