Comment from Ronnie
Time March 22, 2012 at 10:20 am

I was glad to see this touched on, but was disappointed by some of the same things you mentioned. I felt it did come across as a quick fix thing. I’ve tried eliminating all those items, to no avail. I’ve also tried all of his suggested items – melatonin, D-Ribose – neither were any help to me, nor have the long list of medications I’ve tried been. This is NOT a quick-fix & there is no one-size-fits-all solution.

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Cherie Smith Reply:
March 26th, 2012 at 7:16 pm

I’m doing cleansing now, but still have bad days, i don’t know when i will be able to finish, No sugar, choc , soy,eggs,dairy,no peanunt butter, only sweetner is stivia, i have been using for years, all decaf coffee and teas. I have never had one Dr.offer to do a scan and thought i was just nuts,now i go to pain managment, only help,i do walk when i can but somedays are just bad, sleep for 4 hour at a time,Rheumatologist became a hand holder, i changed Dr’s at least 4 times.

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Comment from Judith
Time March 22, 2012 at 3:38 pm

Yes, a true discussion of Fibromyalgia and it’s symptoms could certainly take more than an hour show. Noone even mentioned shooting pains, burning pain, pins and needles or “walking on broken glass”, elbows and funny bone pain, swollen areas surrounding glands, breast, chest and mammory pain. And not nearly enough discussion was done about the sudden onsets of pure dibilitating pain and fatigue that one can feel coming on after trying to sit up or ride too long, or what a toll it takes to prepare for and have company and how long it may take to recooperate. And the toll it takes on ones marriage and family life is unimaginable by most. I’m still not done but my point is that not many people can even begin to comprehend what strength and courage it takes to just get out of bed each day, knowing the possibility of what lies ahead, but most people can not believe this is really going on with millions of women. 15 years ago I was a powerhouse of energy, loving my life and couldn’t wait for my feet to hit the floor in the morning. How they can misunderstand this sudden and huge transformation for laziness or unwillingness to work is more than I can stand. No wonder we cry!

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Comment from MIKI
Time March 22, 2012 at 11:27 pm

Terrible segment. There is so much more to this disease/condition and they were way off base. Although I am glad Fibro is getting more attention, I was displeased that the segment was so misleading in ways to the public. It irritated me. Thanks for writing about it!

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Comment from Felicia Fibro
Time March 22, 2012 at 11:33 pm

Yes, I was also surprised that they didn’t list many of the other symptoms. Even The Helpful Hubby thought the segment was lacking in many areas. I’m happy Dr. Oz made sure people realized it is definitely a real condition, which helps awareness, but hope he’ll do cover it more fully in the future.

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Comment from Shannon
Time March 23, 2012 at 12:42 am

I think the discussion was so vague with very little detail that I thought it was a waste of time to even do.

I’m pretty darn sure Dr. Oz is no medical doctor at all. Part of the reason I don’t watch the show. Though I’m sure for many people his “endorsement” by Oprah gives him authority he may not otherwise have.

Anyway, I am suspect of anything said on a talk show when I know the true purpose is to talk about controversial topics to get the best ratings. Or worse, have questionable quests that react inappropriately (screaming, running at other people, etc) to get ratings (aka Jerry Springer). I would have been surprised had I actually learned something new or that FM was discussed at length.

In fact, I felt some of what was said very misleading. Even inaccurate. For example, having to have 11 tender points is no longer a “must” in diagnosis. I also agree that it seemed that they were saying supplements helped. While that one woman indicated she’d tried many of the things suggested, it sure seemed to me that she wanted to say nothing works for her. I wish she did say it.

Regardless, if Dr. Oz is talking about Fibromyalgia whatever positive exposure his show gives FM is good.

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Comment from Terry
Time March 23, 2012 at 6:55 am

The fact that no focus was placed on discussing both the individual nature of effective treatment and the fact that symptoms present themselves differently within individual patients – these omissions to me make the entire piece of greatly diminished value.

I also agree this kind of reporting on Fibromyalgia will no doubt result in friends and family offering new-found expert advice that is frankly absurd – “I saw on Dr. Oz that if you just start taking D-Ribose all your fatigue problems will go away!”

Its like the friend who told me last week that my wife’s Fibro would likely be cured if we just started using a juicer. I did not punch him – but I sorta felt like it.

I would love to get Dr. Oz to actually do some real research and reading on Fibro.
Terry

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Sabrina Stephens Reply:
July 14th, 2012 at 1:51 pm

I love that.. “I did not punch him.” If only more husbands were advocates as supportive as you!!

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Shannon Reply:
October 9th, 2012 at 7:06 pm

I’m sure many are, we aren’t privy to conversations our husbands have all the time! lol I can only imagine what my hubby says to nay-sayers he comes across. He sees what I go through and then some.

And he HAS been known to more than want to throw a punch for much less haha.
Shannon recently posted: Fibromyalgia is Funny

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Comment from Karen
Time March 24, 2012 at 4:23 pm

I’m glad that he at least made the effort to bringing some exposure to the topic but whether it was for lack of time or whatever, it definitely was lacking. I’ve tried the D-ribose and melatonin does NOT always work. I have tried melatonin in conjunction with zinc and magnesium and that seems to help with my sleep. The 11 out of 18 tender point diagnosis test is on its way out, he definitely needed to do his homework and apparently hadn’t. New news comes out about fibro every day….it’s up to us as patients to keep on top of it, to educate our doctors it seems like!
Karen recently posted: Cheesy Amusing Athletics Bloggertime

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Sabrina Stephens Reply:
July 14th, 2012 at 1:49 pm

Well said!!! If any non-Fibromyalgia specialists think they know more about our disease than we do, they need to give their heads a shake! Our doctors need to listen to us, and get on the internet themselves!!

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Comment from Karen
Time March 26, 2012 at 4:02 pm

It is so depressing. This is why I no longer tell anyone I have fibromyalgia.

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Comment from Felicia Fibro
Time March 31, 2012 at 5:51 am

Shannon & Karen – I too was surprised there wasn’t a mention of the ACR diagnostic criteria being questioned for replacement of the newer proposed criteria.

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Shannon Reply:
October 9th, 2012 at 7:07 pm

Well, their research is only as good as the person who did the grunt work, right? If they didn’t bother finding out what is most current, there’s our answer, yeah?
Shannon recently posted: Fibromyalgia is Funny

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Comment from Paulette
Time April 23, 2012 at 8:41 am

I have been taking Savilla, which has helped a lot, but the possible side effects are scary.

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Comment from Sabrina Stephens
Time July 14, 2012 at 12:38 pm

They were going to talk about controversial treatments. I think a lot was missing. And I just have to say… To those people that don’t believe Fibromyalgia is real.. After my diagnosis, my mother began reading my book, “What Your Doctor May Not Tell You About Fibromyalgia,” by Dr. R. Paul St. Amand & Claudia Craig Marek. She then decided that she must have it too. I told her not to waste time with doctors. She began the Guaifenesin Protocol as outlined in the book with my guidance. Within 2 weeks her symptoms began disappearing, just as mine did. As I learned how genetic this syndrome is, I quickly notified other family members, some I hadn’t seen in decades. Low and behold, my mother’s late brother’s daughter was suffering with the same symptoms and was unable to get a diagnosis, just as her father had suffered with chronic pain his whole life. She began the protocol as well, and began to see her symptoms vanish. I began to think about my daughter, as I had read in the book that young children can be affected. Do you believe a 4 year-old can have Fibromyalgia? Not too many of us display significant symptoms at such a young age. I began Olivia on the Guaifenesin Protocol as well, and within 2 weeks she was a new girl! No longer whining all day and laying on the couch being irritable. She was happy, affectionate and full of energy!! Within 6 weeks she was free-and-clear of her symptoms. No more rashes, no more fatigue, no more moodiness, no more insomnia and frequent waking in the night, and if she even gets a cold virus or infection, it is very short-lived and does not slow her down. Dr. St. Amand believes we Fibromyalgics are unable to excrete an element from the kidneys. He believes, with good reason, this element is phosphate. Guaifenesin is not only a mucous thinner, it is also a rarely used uricosuric agent. It aids the kidneys in excreting this element with affects all of our cells mitochondria. Thousands of people have reversed their Fibromyalgia on this protocol using a simple drug that is cheap and has no side effects. No studies can prove why it works, but it does! My husband thought I was a hypochondriac until he saw me getting better. People who doubt Fibromyalgia exists often need to see a before and after, as concrete evidence – since right now, we cannot prove what is causing it. ~Sabrina Stephens

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Felicia Fibro Reply:
July 14th, 2012 at 1:39 pm

Thanks for bringing up this controversial treatment, since many do think Guaifenesin helps their fibromyalgia symptoms. I’m glad to hear your family is feeling better!

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Comment from Shannon
Time October 9, 2012 at 7:01 pm

While we all know Wikipedia is user moderated and therefor not always the best resource, it does tend to have a good basis in fact. I note that the Guaifensin entry states that the FDA has NOT approved it. With no clinical studies, I’m not so sure I’d try yet another drug that may or may not work and do who knows what to my poor body in the long run.

http://en.wikipedia.org/wiki/Guaifenesin#Treatment_of_fibromyalgia
Shannon recently posted: Fibromyalgia is Funny

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Comment from Dave
Time December 24, 2012 at 8:07 am

Felicia, I think you made a great point by showing how lacking this segment was. As you said, if it were just as easy as taking those few supplements, there would be a lot less fibromyalgia in our world. Sadly, it is not as simple as they would make it seem.
Dave recently posted: Fibromyalgia affects every part of your life, doesn’t it?

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Comment from karen
Time July 9, 2013 at 12:02 am

I’ve been suffering with Fibromyalgia for years now & taking a medication given to me by my doctor. I’ve yet to see any show discuss the true pain & problems this disease causes us. My doctor understands but is limited to what she can do for me. We have tried many things but most have failed. All medications had many side affects that I am living with along with every problem that comes with the disease. Most people have NO idea how serious this disease is & everyone has a different opinion on what works best for you. I’ve yet to find the right fix for me & it’s been 5 years now. I would love to see someone do a show on how serious this illness is & discuss ALL the symptoms & problems that come along with it.

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Scott Reply:
July 23rd, 2013 at 7:44 am

The reason they don’t talk about how serious it is, is simple, it doesn’t kill, it isn’t degenerative and they have no real answers to what causes it. I go to NIH for trial studies, and so far it has gone from physical, to psychological, and now they think it is neurological. The doctors don’t have a clue, so they don’t know what direction to go.

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Comment from karen
Time July 9, 2013 at 12:06 am

I was disappointed in the show, I’ve yet to see a Doctor really discuss how serious this disease is. We really need someone to talk about ALL the symptoms & problems that come along with fibromyalgia & how we that suffer with this disease aren’t crazy or lazy, we are in a lot of pain & desperately need the medical field to put attention on a better treatment for it. I’ve been suffering for 5 years now & have found a medication that kind of works but has many side affects that add to the problem. Every one seems to have a different opinion on what is the best treatment for us but we are all different & I have yet to find anyone that has a good idea on a good diet for a fibromyalgia patient.

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Comment from Scott
Time July 23, 2013 at 7:41 am

No big surprise to me. So often I have watched a Dr. Oz only to try and find it is a load of carp(pun intended). I am starting to think that he is getting paid from pharma for mentioning the non-med stuff that doesn’t work. I have had fibro since 2006, and I am a 44 year old MALE. Why everyone thinks this is a female middle age disease(started at age 37) only is infuriating to me!!!
For tremors, try a 32oz of gatorade, that does more for me than anything else I have tried. Haven’t had caffeine since I was 19. Don’t bother with the elimination diet. If something bothers you, it will show up in other ways as well. Gluten will cause nausea and dysentery. Sugar isn’t the problem, more likely that it is corn sweetener.
The key to this disease is SLEEP!!! Find that magic combo that works for you. I use Ultram ER 300(non opioid opiate), valium 10mg, and flexeril 20-30mg. Get 6 hours 80% of the time. There is NO MAGIC BULLET. I have tried all the BS options, it is neurological, that is just too complex for a one size fits all. Good luck to you all in your battles, and ignore the noise, if there is a supermed that comes out, the Rheumatologist will know about it. Trust the doctor you can look in the eye, not the one on the TV.

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Felicia Fibro Reply:
July 23rd, 2013 at 9:36 am

Scott, I actually disagree with you on the elimination diet aspect. My rheumatologist suggested that I do one and I found that I have a soy sensitivity. I would have never figured that out in a million years. I have bad IBS issues and eliminating soy nearly made them disappear. Before I knew we could not link my symptoms to soy because soy is in SO many things. I was shocked when I did the food challenge for it that I felt sick almost immediately. That is not how it was before removing soy from my diet for the weeks required first. I’ve written multiple posts about my journey with that if you’re interested.

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