What was your opinion of today's, July 23rd Dr. Oz show on fibromyalgia?

General
1

I watched the show hoping that I would learn more about the type of research, new medications and treatments. I wish they would have had someone from a health insurance company on who could have been asked by Dr. Oz why most of the holistic treatments like acupuncture, manipulations, hypnotherapy, etc. are not covered when it would help?

I believe someone newly diagnosed would have learned something, but I truly believe that I learned more from this site than I did today. Hopefully the medical community will view the show and see how appalled they were and we are by doctors who don’t acknowledge that we aren’t hypochondriacs!

2

It was full of the myriad of things that most of us have tried. It was not informative or educational and coming from a physician who knows how sorely folks have been educated on the subject, I think he did not cover current treatments and issues!

3

I just finished watching this show and I must say that was very disappointed. I did not learn anything I didn't already know, too bad they really had an opportunity to educate people and they really didn't take it. I was left feeling that they told people if we used holistic treatments, we would all get better. I hope that this show doesn't do more damage than good as far as how we are viewed. Someone that doesn't know any better could really misinterpret the small bit of treatment information provided as this is how to treat fibro and people will get better.

This show really left me feeling frustrated.

4

Another fibro community was making this an event, and at first I wasn't going to watch it. From watching Dr. Oz talking about pain - period - he's sensationalizes treatment. Makes it sound like: bing, bang, boom. CURE!

Also, his demeanor towards pain is very....cold. So, I had planned or not watching it, so I wouldn't be disappointed, upset, or turned off from him completely (because he does have a lot of helpful information in his shows I can use for other things). He is also completely turned off from people using pain medications for pain - you can tell from his other shows when he's talking about pain. That and the fact that it took him THIS LONG to talk about Fibro...I really didn't want to watch.

But it was on today, and I watched it sans 15 minutes. It was lackluster. The one treatment they did mention, I've done before. I had an awesome chiro/massage team that I used twice a week. That was $160 per week.....with insurance. So no, this won't work for the millions of us who have fibromyalgia.

Disappointed is an understatement. Also, the lady who was explaining the treatment by the D.O. used the word "successful" in describing the relief it brings. Successful? No, honey. Not successful. It's lessens the pain so you don't bash your head into a wall or pull the hairs out of your skull...but it is by no means "successful".

I am, however, grateful that he even had this topic on his show. I am grateful for the doctor who said it's not "all in our heads". And getting it out there so people don't just think this is a diagnosis given to people because doctors "don't know what is wrong" - discounting the pains we have. It's very hurtful when people say that. As if we need any more pain!

5

Fibromyalgia does occur without inflammation for some patients. It's just that so many of us DO have it with inflammation that you hear it so often...almost every fibro patient I know has high inflammation. But that's not always the case.

P.S. well wishes on getting over that flare you're in SOON! <3

6

that treatment they were doing on the show really hurts afterward...but the next day the spine/neck pains are a bit better - less stiff. It does NOT take away the pain. I repeat...does NOT lol So yeah...I know what you mean looking at that and wondering....how in the WORLD is that helping her. lol <3

Ugh the rain has been making my spine/neck/joints so stiff...well wishes you have a good day tomorrow!

7

Very disappointing,my wife picked up on this doctor from Stanford saying that fibro is a disease of the brain. I said that from the beggining, not that it is a hypochondrack or something but that it is an inflammation or a process, like a seizure, something in the brain not processing info correctly.She also heard that other dr. say something about a good diet, rich in whole grains and balanced proteins. I'm willing to try any diet that her IBS and fibro will let her body stand so far I haven't found one that doesn't have her in constant bloating or dumping!

Being Arthritic as well, she watch in horror as that Dr. twisted that poor woman on the table and said that that is one Dr. that would never get close to her.

8

What I noticed too, they never asked the women who had battled it what made her feel so good again! Nothing was mentioned about any medication used to treat it. I have never heard a doctor say that fibromyalgia was a “disease” only a condition. If that’s the case, doctors should be more accepting of us.

I went to his website and wrote an e-mail stating that I thought it was wonderful that he brought it out in the open, but it would have been nice to state what helps the patient. Using alternative treatments is great, but most insurance companies won’t pay and many of us don’t work or are receiving SSI or SSD and can’t afford the out of pocket expense for a temporary treatment. Can’t afford to do it 2-3 times a week! I’ll let you know if I hear anything back.

I do hope that family members and friends who watched it now know that it’s REAL!

9

I was very disappointed in the show. Made sure I was in my office at work with the TV on to watch. I didn’t learn anything that I didn’t already know. I had hoped he would talk about meds/other approaches. Maybe diet and exercise. I really thought he might talk about vitamins/supplements. I missed the last 15 minutes because I teach floral design classes for our local technical college and the students were starting to arrive.

10

I agree and there was no mentions of the pressure points, I just found it did not much to help us. He also only mentioned women can get it not men. I was very disappointed and would not recommend it to anybody!! That is just how I feel.

11

I was disappointed. The show didn't spend enough time on each section for one to take it in.

Yes, Sandi, I have learned much more from this group than Dr. Oz's show.

I also found that Dr. Oz speaks too quickly and many words get garbled in his mouth.

The female doctor who treats fibromyalgia patients was good and you could hear all of her words.

I really don't know who would benefit from this show.

12

I did not see the show ....and find this very interesting......Thank you

13

I don't know if I can post links here or not... Is this what you're talking about? I will have to watch it tonight when I get home-no sound at work. http://www.doctoroz.com/episode/disease-doctors-miss-most-fibromyalgia

14

HERE ARE THE FIBROMYALGIA VIDEOS THAT WERE ON DR. OZ. FIND PART 1,2,3,4. THEY ARE AT THE TOP, AND TONS OF OTHER FIBRO INFO UNDER THOSE.
http://www.doctoroz.com/search?q1=Fibromyalgia

15

On his website, there are also other shows he had in the past on Fibro. I'm glad that he mentioned that if we get a pain or even slight injury somewhere, our pain will spread throughout our whole body. It's a Chronic Pain Syndrome. It would have made more sense if they would have said something about our substance P in the brain. before talking about the pain spreading all over. Studies have shown that we have 5x the amount of substance P in our brain (the chemical that tells the brain we are feeling pain.) So if we stub our toe or some other minor pain to others, we feel it 5 times more than others. So this shows what strong people we actually are, bearing more pain, more often and for longer than people without Fibro. also, Due to our nervous system being turned up to high 24/7, soon we become hypersensitive to noise and bright lights and crowds and smells and even moods. We get irritable very easy through the exhaustion and pain.

16

Thanks for posting the links for the show, Sheila, as I missed the broadcast.

For less than 20 minutes of info, I thought they did a fairly good job of letting the masses of people watching that do NOT have fibro know that this is very real, and life threatening, in the loss of quality of life. Hopefully this will help in raising awareness in others we deal with in our daily lives, letting them know that this is NOT imagined, and the pain is severe. Also helpful for others to hear is that we do not recover and release the pain experience as well people do.

The blonde haired lady with fibro was oh so right in the fact that we have to be our own advocate, and the female Doctor was correct in telling us that we must be treated by a Physician who believes us that we feel that we have a comfortable relationship with. I am also glad that Rheumatologists and Neurologists were recommended.

I thought the osteo manipulations were in some ways in line with Chiropractic manipulations, but my DC does NOT dig into my muscles like that, and he uses moist heat and stretches me out before adjusting me, and it DOES help, however there are times when I cannot tolerate much touching from anyone.

Good point about the substance P, I think this was a 'fibro show for beginners', and hopefully the beginners will get on the web, order books and become more aware of what is happening to their body. The pain dial was a good start on the over reacting brain in line with our 'early warning system' having gone awry. I was very surprised that the PM Physician called it a condition or disease of the brain, and mentioned some of the various reasons such as trauma or illness that causes this to happen to us.

I did think the PM Doctor Macky was contradicting himself in saying that a diet rich in whole grains and an anti-inflammatory diet is helpful. If you can eat grains, it is best to eat whole grains, rather than the stripped down, denatured food found in most grocery stores, however the first thing eliminated in an anti-inflammatory diet is grains. All of that being said, I was on an anti-inflammatory, eating only grass fed meat diet for a year or more, not feeling any better. Asking my rheumatologist about this, he replied that my primary disease of Psoriatic Arthritis causes such a high magnitude of inflammation into the body, that this diet is barely a drop in the swimming pool, if there are no food allergies. This is his opinion, I know others are helped by this tremendously.

I guess I did learn one thing new, this is the first time I have heard a Doctor state that FM is an inflammatory disease in the fact that the nerves and neurons in the brain become inflammed. If I read it before, I don't remember it. Sometimes I need to read something more than once to retain it. BTW, I took notes or would not have been able to recall this nearly as well. I am curious to know what these new brain therapies are that he discussed. Wonder if that is available from the show? Three pain meds, wonder if those are listed somewhere. I can imagine 2 are Lyrica and Neurontin. Wonder if the third is Savella, Cymbalta?

17

Yes, SK, I think you guessed the 3 meds. Savella, Lyrica, Cymbalta Yesterday he had a short blip on about psoriatic arthritis, but I've been watching the website and it hasn't posted yet. It showed how the skin grows out of control, and underneath is red and angry tissue.

Yes I was surprised to hear that one person say that fibro involved "inflammation" of the nerves, because all these years I've been taught there is no inflammation, just nerve pain, and if you do have inflammation, you have something in addition to Fibro.

I just can see a lot of people thinking that the idea of it being a brain problem,means "It's all in their heads" or made up, or somehow controlled by our thoughts, which it isn't.

You were on a grain-fed meat program for a year? Beef and lamb and pork all are all inflammatory.foods. Mom and I suffer every time we ate them, so we eat fish and chicken now, and crab, shrimp, etc

Forgive my absence and quietness. I read quite a bit here but have been too weak to reply most days.Congrats on your new grandbaby!

Sheila

18

I was generally disappointed by the show. I was hoping to hear more cutting edge information. Such as more info about the recent blood test for fibro that was recently discovered, more in depth information as to what an actual fibro patient goes through, a day in the life so to speak so that others would be more understanding. I so wanted Oprah to address this when she was still on the air ! I even wrote asking about it !

19

Chadsirishgirl,

Oprah still has her own show and a hundred others on her own channel that she could highlight Fibro if she was talked into it.I think it was just enough to tell the nation that it IS real, it IS VERY painful and destroys your quality of life. This information would help millions of people who are being treated badly and not believed and under-treated.

20

If I said grain fed, that was a mistake, grass fed is what I meant, and I've got to tell you it was just like going out in the yard and ripping up grass and eating it! That means I was nearly a vegetarian.

Yes, it is easy for people who don't take the time to use the greatest reference tool known to man, to think that saying it's a brain disease could mean it's all in our heads, though that was the first point Dr Oz made! If a friend or loved one tells me that they are ill with something that I don't totally understand, I look it up!!

BTW, I have never had Psoriasis, though everything says I could get it at any time, all of my grand kids have it! I have all kinds of stuff here for them for it!

Hope you got some strength back, Sheila!