I recently read on a site about a study done in Germany. That study talked about nerve ending just under the skin causing our problems. They concluded that it was a neurological problem.

If he wants to get technical, everything is psychological. We humans operate through our brains, entirely. If we break a leg, the brain receives it as pain. What if that receptor were turned off? We wouldn't feel a thing. Same goes for fibromyalgia, our pain receptors are activated almost nonstop, hence we can't fully numb our pain because that would require shutting it off. Yes, it's perceived by the brain. Thus, making everything we see, touch, taste: mental. Might as well make headaches a mental disorder too.

Also sorry to double post: But if this guy wants to classify it as a mental disorder and give us a miracle drug that actually is able to shut off the nerve/pain receptors from sparking up; thus curing our disease... then he can baffle the world and shut us all up. Until then, he can keep talking out of his @ss and screw people over.

I would like to take this opportunity to officially ask that we somehow change the name of fibromyalgia to myalgic encephalopathy. I have read that this Latin term is much closer to a read reflection of what is happening in our bodies. Note: I have read this term used to refer to both CFS and FMS ( as for me, it's been my feeling for more than 20 years that these are the same disease, but with different presenting symptoms). How can this be done?
Experts and those in the 'official world' used to refer to the disease we all have by other terms:

"This mysterious illness has been studied since the 1800s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. (Fibro meaning fibrous tissue, my meaning muscle, and algia meaning pain)"

So, as most of us know, pain we feel is not actually IN the muscles, but in the way our brain perceives pain -- at least that's what they're saying right now, despite the statements of this loudmouth. I am not completely certain that that is the case. When I begin reacting to a trigger point, I probe around, trying to locate the spot for trigger point injections and I have discovered that I often feel a difference in the way that area feels. Mostly, I feel that there is a little indentation in the fabric under the skin, creating a sort of 'hole' in my body where I feel this pain so intensely. I can also detect little knots underneath the skin in places that also hurt. Now how can that be if this is nothing but a mis-perception of pain? What we need here is some decent research. HellO????? Obama????? How about throwing some domestic spending at this disease, how about it? How about creating 5 or 10 domestic jobs with some research over here???? Yes???? Over here????

Bottom line, this is about not, but the almighty DOLLAR. We don't need to be told again what that might mean. I am so disgusted that so little has been done to help us, I could chew down my itty-bitty teeth that are left from grinding my teeth from TMJD over the years to the gumline.

It's not as though we don't already feel completely helpless against what our own bodies are doing to us that we also have to fight for treatments in the face of some of the strangest logical reasoning I've ever encountered.

He reminds me of my former primary care doc, who said to me that he thought fibromyalgia was a hysterical condition. Whatever. As more research comes out, hopefully such drs will be shut up.

I love everyone's comments here! Especially reply #18, Fibroh3lix!

This guy bites.
He calls Fibro a controversial diagnosis.
Tons of medical conditions are still considered controversial and Dr's debate the validity and invalidity of such DX's all the time.
Why? Because the Human Body is so complex no one, not even Dr's can possibly know everything about it.
So, yes Dr's debate among themselves, but they don't rule out an entire disease based on a discussion they had over lunch.
This guy is a quack.
Let's not forget the time and research hundreds of Rheumatologists have spent years studying and running clinical tests to show that while Fibro has no blood test, there are different markers that lead to a DX.
This f*uck up seems to think the entire Fibro population is out to get a free ride on SSDI or Worker's Comp.
To heck with him!
LuLu

*On a side note...I love grass roots politics. When it comes time for petitions and letter writing and standing on the State House Steps, I'll be there...dunno if it'll help, but it sure is fun to irritate politicians by inundating them with tons and tons of letters everyday :)

I believe that researchers who have already made some scientific break throughs but still in progress of gathering quantitative data will eventually blow those dummy ones who believe its psychological rightout of the water. Personally, I had an MRI scan on my brain and it came up abnormal but there are no tumors and nothing malignant. Nothing even degenerative. It appears like MS and so do many of my symptoms. My neurologist performed more exams but can't explan it other than migraines. So I am going for the lumbar test to check my spinal fluids to rule out MS positively but the neurologist nor I believe that I have MS in fact they all believe I show all the signs and symptoms specifically for FM. I wonder if FM can show up on MRI s of the brain but do not know how ti recognize it or link it to FM.

Also there is a book I am currently reading written by a doctor who got FM in her second year of med school so she did her own research and wrote about it. She did find a s Pacific blood test that shows high levels of cytokines in those patients with FM. This book is fantastic needless to say. I purchased the kindle version but you can also order the book through Amazon. The title is "Figuring Out Fibromyalgia: Current science and the most effective treatment" by Ginevra Liptan, M.D. Not sure yet how I feel about all her suggest treatments yet, still reading but she has improved d dramatically but being a doctor she was also able to get of meds that the public still not get or too expensive. The important thing about this is she does prove its a physical illness no doubt and offers other treatments that we can utilize or improve upon.

I wanted to post this quickly regarding the book Maressa mentions above. This is an interview with the doctor (an M.D.):

http://www.youtube.com/watch?v=QiWgTPHwo7E

Definitely makes me feel somewhat better about the medical profession than I have been lately.

Her book apparently discusses an expensive blood test for allergens. It is less expensive to do an elimination diet. After doing one on myself many years ago I tried orange juice and it was like drinking liquid pain. Evey once an a while I go on a citrus jag and every time--zap!

Hi Ann,

Wow that is awesome that you know about this doctor with FM. I did not know she has a youtube link. I will go check it out. I gave up diet coke and artificial sweetners. I found out that I would get worse when I would use artificial sweetners in my coffee. I cant give up my soda yet but at least I drink Pepsi's new product called "Pepsi Now" and has real sugar but significantly less. I drink just one can a day, occasionally two.

I also want to be tested for allergies with blood tests, in addition, I am in the section of the book where the doctor said that having a strand of your hair is ideal for testing for the toxins we are being exposed too and then work on trying to eliminate or reduce it as much as possible.

Thanks for sharing and I have to agree with you, it really is comforting when there are doctors out there who are experiencing Fibro for themselves since they are in the best position to change those with erroneous ideas.

My last trip to the er was because I had the bug that caused me to get super dehydrated and pass out. My lips were numb and my tongue tingly and it triggered a flare (I have fibro and ms) and the doc said it was just anxiety. Hello! I have a debilitating disease and its my second er trip in in four weeks. The first resulted in a day and a half stay in ccu and a total four day stay. Yes I had anxiety, but I also have fibro and ms. Yes it's in my head. And spine. And nerves. And no I'm not crazy. I'm not a drug seeker. I don't need a shrink, I just need a doctor who will actually listen and treat me like a human being in pain an help me by either treating the symptoms when I can't manage or helping me find ways to cope when the symptoms can't be treated. Can you tell I'm still a little bitter?
Sorry for the rant.

That wasn't a rant.
You said what was in my head, but couldn't put in sentences .
Thanks for writing that so clearly :)

This is interesting. After watching the YouTube video linked above (and then part 2), I decided to do some research into The Frieda Center for Fibromyalgia only to learn that it has shut down. I was hoping their site would provide some helpful info on or links to other research.

The other site Dr. Liptan mentions in the video, http://myalgia.com/, is up and running, and DOES have some links that look worthy of exploration.

Lamb

Hi Everyone!
I've stepped into this discussion years later, but wanted to share that The Frida Center for Fibromyalgia is open once again! Dr. Liptan is my personal physician, and she has reopened her clinic. Here is the info for anyone who is interested in:

Email: contact@fridacenter.com
Address: 1270 Parrish Street, Suite A; Lake Oswego, OR. 97034.

Personally, this doctor saved my life. I met her when she was a clinician at the Legacy Health System Pain Clinic at Good Samaritan Hospital in Portland, Oregon. I was very ill. When she left to go to her private practice, I followed her there, despite not having insurance to cover me. When her clinic closed (growing too big, too quickly) she went back to Legacy Health System as an internal medicine physician I followed her there. She just left Legacy again for a smaller clinic with a better business plan (I'd assume), and I'm scheduled to see her in about a month! I can't wait. And in addition to her being an amazing doctor, she is a wonderful person -- caring, smart, funny, warm and really willing to work with her clients who want to work with her!

I just wanted to throw this out there for anyone who is interested. Oh! And her book is really great! It's an interesting read that's not too complicated and overly clinical (though the references are there for anyone who wants that much detail and clinical background. Of course not all treatments are for everyone, and some are a little out there in my opinion. But I think that the information is in the book to allow people to begin searching for the information that make sense to them.

Figuring Out Fibromyalgia: Current Science and the Most Effective Treatments, by Ginevra Liptan, MD. (2011)

Well, I guess I've jumped into the support group with both feet! I'm excited to be here. Please forgive my pulling up "old news", I just wanted to clarify that the clinic is back in business, and to share my experience with the best MD I've ever worked with (and I used to work as a hospital discharge planner, so I have worked with doctors)!

Glad to "meet" you all!

Lynn

I'm completely confused as to what this clinic has to do with this thread? What am I missing?