Has anyone tried "Fibromyalgia and Fatigue Centers, Inc."?

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KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 12/5/2009 3:56 PM (GMT -7)   
Hello,
 
I hope you are all doing well today! 
 
I was wondering if anyone here has, or knows someone who has, gone to one of these centers for treatment?  If so, was it worth the effort / money?
 
I found out about the center after reading about Dr. Oz's episode regarding XMRV for CFS.  So, now I'm curious.
 
I probably can't afford the place anyway, but I figured it was worth asking about.
 
I apologize in advance if this question has been asked before!  I did a quick search and could not find anything.
 
Take care and thanks,
 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/5/2009 10:04 PM (GMT -7)   
Hi Kerri!

I'm squinting here trying to read between the lines of your post....and I'm guessing you are hesitant that something like this will work. Me too. I searched around the internet and found lots of people willing to take our money and promise a cure or something close to it. Most of what's out there are bloggers throwing claims at each other. But none of these folks are coming up with good scientific research. I'm talking about the kind that is published, double-blind trials with solid, unbiased work behind them.

Most all of the research I've seen is university based at the teaching medical schools. One good one for pain and fibromyalgia is the Stanford Pain Clinic and also University of Michigan. Jeannie has some great information on that one.

I would love to tell you that it would be money well spent, but if it were that great then why aren't all of our doctors doing the same thing. My doctor sure doesn't need more patients and it truly breaks his heart to see people like me in there with fibro and all that goes with it. He has nothing to gain by not going for a cure. But it's not out there...not yet.

The latest research shows that fibro is likely a central nervous system disorder. Here's a link to the Stanford University Pain research center for some interesting reading. snapl.stanford.edu/research/

I hope this answers your question. I'm no researcher nor doctor but I try to be a smart and savvy consumer. If if sounds too good to be true...you guessed it!

Hugs,
Chutz
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/5/2009 10:10 PM (GMT -7)   
My friend went to one in Texas. It was VERY expensive. I really liked that they tested her for just about everything but I'm not sure if that is always a good idea. No one's body is perfect and we all have slight variations in our test results so just because something appears a little bit off in a test, does it really need to be treated?

Her thyroid and hormones were off a bit so they treated these things plus others. She was given about a half dozen prescriptions and twice that in vitamins and supplements. Again, it was very expensive and her insurance only paid for a few of the prescriptions.

She did everything they asked for almost a year but only improved a little bit, certainly not enough to warrant the cost. I improved more than she did just by adding magnesium and malic acid to my day.

I think it is a great place to go for a diagnosis and to rule out other illnesses but I don't know how effective their treatments are.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 12/6/2009 7:06 AM (GMT -7)   
This is a little off-topic, but a few months ago, my doctor told me that resent research shows that there may be some kind of virus linked to the cause of fibro. I've been doing a little bit of research on it. I will post the links when I find them.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 12/6/2009 11:33 AM (GMT -7)   

I do agree with Chutz about these fibro centers.  They are extremely expensive and there is no proof that they know what they are doing.  In the Fibro 101 thread there is a link to Drs. Respond to New York Times Article.  You will see information from top specialists that are trying to find the answers and you will see what they are thinking.  But, the bottom line is, there is no absolute cause found...yet.

My question would be, about the virus theory, is why mostly women get it!  I think hormones play into it because of it affecting mostly women.  But, I'm guessing, too!  The great thing is they are now actively searching for answers.  Not too many years ago they thought it was all in our heads.

 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 12/6/2009 11:37:31 AM (GMT-7)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/6/2009 12:51 PM (GMT -7)   
Sherrine, we have had quite a few men in our fibro group over the years. They all had similar stories about their medical history and diagnosis. All of them said that their docs brushed off their pain as related to past injuries, mostly sports injuries. Men are perceived as living rougher lives than women so the docs seemed to always blame injuries.

The men said that for many years they excepted that diagnosis. Even the men that knew about fibro thought it was a woman's disease so they couldn't have it. I know two of the men were told flat out by doctors that only women get fibro.

Maybe more men would get diagnosed with fibro if it wasn't just "a woman's disease." I wonder if they made a Lyrica commercial with a man if the number of men with fibro would jump.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 12/6/2009 2:38 PM (GMT -7)   
I never thought of that, Dagger.  I can see where doctors may think it's the rougher lifestyle of men that are causing the pain.  Even though we are diagnosed, we sometimes question why we are having the pain we have...did we overdo, etc. 
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


KerriH
Regular Member


Date Joined Mar 2008
Total Posts : 316
   Posted 12/6/2009 9:13 PM (GMT -7)   
Thank you all so much for your feedback.  I really do appreciate it.
 
I guess, deep down, I didn't really trust that it would be the answer we've all been searching for.  There was a little part of me that hoped it would, I guess, but that's the pain talking.
 
Like many here, during a flare I feel a little desperate.  I guess this is where these people make all their money?!
 
Thanks again,
 


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 12/6/2009 9:33 PM (GMT -7)   

Hi Kerri,

I didn't go to one of the fibro centers, but I did buy the book that was written by the doc that heads up the centers and wouldn't you know it, I can't think of his name right now, or the title of the book. In any case, he talks of his treatments in the books and the vitamins and supplements and the tests done. Also food elimination. I followed his advice, taking a lot of supplements for almost a year and I don't think it really helped at all. Believe me, after reading his book, I was psyched. I really thought I had found it, this was going to be the cure, I was going to feel good once and for all but sadly, it did not work for me.

All we can do is keep researching the studies being done and hoping it will come soon.

I've been having some very painful days, the kind where you feel you can't really take much more...I need a break...

be well

Miriam


Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


jrda88
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 12/6/2009 10:32 PM (GMT -7)   
I went to one of these centers last week for a consultation. While they were nice, it seemed like their main intent was to get me to sign off on a treatment package, which was pretty expensive. Also, insurance will not pay for their treatments so of course that makes it even more expensive. I would not go there unless you were very sure their treatment was right for you.

susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 1/3/2010 2:50 PM (GMT -7)   
Thanks for posting this site. I appreciate it.
They are primarily holistic medicine, it sounds like to me. Most holistic practices are not covered by our medical insurance, so that is why their rates are so high.

I do like the fact that they rule out a ton of different things (hormonal, etc). I'm wondering what the cost is for their packages.
Susan
41 years old
Married with one child
 
Waiting on diagnoses:  Lupus, Fibromyalgia, MFS or MS.  +ANA, MTHFR heterogenous gene A1298C

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