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Posted 9/30/2012 3:15 PM (GMT 0)
I have been communicationg with severeal people in Europe and the UK that have 100% recovered. None found drugs to be the answer and I am looking into more of what they suggested.

Our local group is going to order the Gupta program in large quantities and are hoping to get a discount if anyone is interested you can contact me. This seems to be the core program they used to getting well.

One lady I spoke with is a lawyer and as in bed for 7 years and now is doing great. I hatee it when people say this is forever. My sister was diagnosed with a brain tumor at age 16 and told to drop out of school and wait to die....well she did die of it but she was 59

Posted 9/30/2012 3:24 PM (GMT 0)
A few things..

I don't think anyone or any Dr. has claimed that medicine "cures" Fibromylagia. There are just some medications that depending on one's symptoms may help relieve those symptoms.

Those with more severe nerve pain may take nerve pain meds like Lyrica, Cymbalta, Neurontin or Savella.

Those with more muscle spasms may take a muscle relaxer as needed. This is what I use when all other modalities don't work that day.

There is also a lot of non medicinal things that we all discuss on here and most all Drs. in the US believe in as well. These are daily exercise, stretching, eating healthy, maintaining a healthy weight, not smoking, limiting stress, taking vitamins or supplements, etc.

Another component to Fibro that my Dr. believes as I was diagnosed back in 1995 was lack of stage 4 sleep. I was put on Ambien after my last fusion and it has made a huge difference in my energy levels as well as the "perception" of pain when I have gotten a decent night's sleep.

So...nowhere in the world does anyone say there is a "cure" for Fibro....But many people have their symptoms go into remission and are doing very well without any type of medicinal intervention.

One should always try and choose a great Dr. who believes in Fibro and develop a comprehensive approach using every possible modality to manage any symptoms.

I am always skeptical about these "protocols or programs" that one person touts (not you...some so called Drs. online) that say they have the cure for Fibro.
Posted 9/30/2012 5:24 PM (GMT 0)
I did check out his video.  He is just selling this to make money off people with chronic illnesses.  I find that totally pathetic.  He wants to keep the prices down for people, he states.  Do you know how cheap it is to produce DVD's?  I don't think there is an expense for his YouTube sites/ads either. 

 

If this really worked, I think we would know more about it.  It's probably a lot of what we do here.  We use vitamins, supplements, exercise, and I do stress positive thinking as an approach to this illness.  This has helped me as much as medication. 

 

There are so many out there so willing to empty your wallet.  This is my personal opinion.  We are searching for help so we are wonderful candidates for this type of thing.  If he is a medical doctor, he should be helping people by getting the word out...not charging them for his DVD's...to find out his "discoveries". 

 

You might want to read Doctors Respond to New York Times Article that is in Fibro 101.  This link has learned doctors talking about what they are discovering about fibro and that it's not all in our head.  (I know Gupta doesn't believe this either but I'm just explaining about this link in Fibro 101)  I do think there is more to this than mind/body issues.

 

Sherrine 

Posted 9/30/2012 6:09 PM (GMT 0)
Actually if you read the Reaserch of Dr. Joseph Ledoux Guptas work is very similar - Joe is the worlds foremost expert on HPA axis dysregualtion
Posted 9/30/2012 7:12 PM (GMT 0)
“This link has learned doctors talking about what they are discovering about fibro and that it's not all in our head”

Actually it is – if it were not coming from the central nervous system which is in control all the bodies processes (and the CNS is definitely in our heads) we would see pathology in the muscle tissues and has been well proven with biopsies the muscles and mitochondria are in perfect working order.

If you look at all the comorbid symptoms they are all CNS mediated...all from the head/brain/CNS

So where would you propose the source is
Posted 9/30/2012 7:19 PM (GMT 0)
I just read the doctors article in Fibro 101. Let say first of all I hurt and I am near insanity at times with the pain so I know it is real and not a “figment”. To understand the mind body connection you hae to understand Allostatic Load and how every cell in the body is changed by stress and other challenges the system endures. You also have to look at neuroplasticity and how the brain learns to return to the state it was just in – even if dysfunctional. This is the crux of the latest research on fibro.

I am a medical journalist and have access to these clinics and research groups and see the current directions they are taking....unfortunately it can take years for basic science to reach clinicians and the public
Posted 10/1/2012 11:17 AM (GMT 0)
Hi James,

Thanks for your post. I wouldn't be interested in being part of the Gupta program but I hope you'll keep us posted with what you learn.

I believe our fibro has a mind/body connection. When we're under stress our pain becomes much worse. Our stomachs are considered our "second brain" and when we eat the wrong thing our pain also becomes worse. I've definitely learned that first hand through the years.

I'm seeing a neuromuscular massage therapist and she thinks my brain could be what has caused my overall body numbness. I'll be talking to my rheumatologist about this at my appointment in a few weeks.

Thanks again.
Posted 10/1/2012 1:13 PM (GMT 0)
Just so we are on the same page....what I meant when I said there was more than a mind/body connection, I meant fibro can't totallyu be handled by "mind over matter" . Of course if it turns out to be a neurological problem it involves the head. DUH! So many of us...women....have been told its all in our heads and to see a psychiatrist. You might not know that since you are a man. I highly doubt that doctors tell too many men that what they are experiencing isn't real. THAT'S what I meant when I said its not all in our heads.

It is already known and discussed here how stress can make our pain worse. We also talk a lot about positive thinking. Both of these things help but we still have pain...but not as much pain.

It would be wonderful if all schools of thought would come together because there does have to be a cause. I didn't go through any trauma when I developed this. But, I still take offense to a doctor making money off our misery....especially since there hasn't been good testing either. He even mentioned this on the YouTube site.

Sherrine
Posted 10/1/2012 1:32 PM (GMT 0)
Hi Sherrine

Being a medical professional I know that anyone presenting with anxiety, IBS, fibro or stress is going to be given one option – drugs and we also know that they tend to perpetuate the problem. 99% of all psychiatrists are drug pushers – they don’t even do therapy anymore.

The fact that these condition tend to be comorbid gives us great clues. There are non-drug protocols for recovery from anxiety – panic –IBS – and chemical sensitivity. We know they are all a result of allostatic load and brain learning and we know that the brain can be retrained ...and that most of the drugs used on these and fibro inhibit the brains ability to reset back to normal...it is called neuro-analgesia.

No one ever recovered from anxiety and panic with the medical model and I trust that may be the case for us
Posted 10/1/2012 2:28 PM (GMT 0)
I don't think your opinions are necessarily right. Unless maybe I got the one percent of psychiatrists that aren't drug pushers. I think being a medical professional, as you say you are, that you are not open minded to how things work here. 99% of all psychiatrists are not drug pushers. Sure they don't counsel, they write prescriptions. That is what they do. I see a psychologist for counseling and a psychiatrist for my medication reviews.

I hope that from now on you can keep an open mind. It isn't all or nothing. There are shades of grey, not just black and white. We are all different and different things work for different people. We all have our daily battle with fibromyalgia. If you can get better without meds, more power to you.
Posted 10/1/2012 3:17 PM (GMT 0)
I do believe that there is a mind-body relationship, but as positive as I am, I have not been able to cure myself of fibro.
Yes, I do believe that my ability to accept fibro and deal with it in a proactive positive manner does have an influence on the quality of my life...that does help me deal with the pain. My symptoms do not seem as severe when I'm not focused on the pain. Using lots of positive self talk and doing things I enjoy does distract and lessen pain...but I am not cured.

For fibro, I have used Savella for over three years now and also a muscle relaxer when needed... if I really thought there was a cure for fibro, I'd stop taking these meds in a heartbeat....until then, I will continue to do what has been working for me.

Hugs, Robin
Posted 10/1/2012 3:37 PM (GMT 0)
Here is a great example of where I think the medical model is harmful.

Savella (Milnacipran) is a serotonin and norepinephrine reuptake inhibitor. This increases norepinephrine...and this increases muscle tension and activates the fight or flight response. At the same time it reduces pain sensations temporarily. This exactly like running a hundred miles and taking a pain pill so you wont know your are being injured. It CAUSES fibro symptoms then numbs to them and then you have to take it again because it is resetting the nervous system into higher levels of sensitization.

AND increasing serotonin to high levels with even minimal doses sensitizes the receptors so that as the blood levels fall you get muscle pain and dozens of fibro symptoms

This is the case with most common fibro drugs...hit your finger with a hammer – take a drug so you don’t feel it then you can hit it again and then at some point you have to take it to stop the pain it is causing.

Read: http://en.wikipedia.org/wiki/Norepinephrine
Posted 10/1/2012 3:51 PM (GMT 0)
The thing is James...your opinion is just that...your opinion. It doesn't hold anymore weight based on you saying you are a medical professional as that is against the forum rules here.

Each person needs to go on their own path/journey with their Dr. who treats Fibromyalgia. Some people use medication in conjunction with natural modalities...others do not. It's a personal choice with their Dr. There isn't a right or wrong.

Based on your other post with all your symptoms now....what is your plan to help with all of these Fibro issues you are having?

And from all of your posts....I gather that you have been suffering from severe anxiety for a long time now and aren't finding the right treatments. If all of these non medicinal treatments from Australia to Europe are supposed to be better...then why can't you do these in the US and aren't working for you?

Post Edited (Snowbunny21) : 10/1/2012 10:06:14 AM (GMT-6)

Posted 10/1/2012 4:06 PM (GMT 0)
I have studied neuroplasticity for many years and since my fibro had not been an issue I had not used the techniques for it . Now that I have spoken with U of Arizona fibro expert, Dr. Ross and Dr. Bennett who is world famous they are now working on the same neuro-plastic modalities and seeing that the medical model is a failure.

Foremost is retraining the CNS from chronic arousal – I am starting to use meditation 4 times a day along with other proven autonomic switching methods. Diet is critical – the blood levels have to be 100% stable to prevent release of fibro activating neurotransmitters and hormones. Hydration – 2% dehydration releases these same hormones. I am doing much more but this is a start
Posted 10/1/2012 4:22 PM (GMT 0)
Just because one Dr. says that medicine is a "failure" for Fibro or anxiety does not make it so....Sorry...

Again...we can't state this more clearly...but if your decision is to use only non medicinal ways to help your Fibro and severe anxiety..that is great and hope it works for you.

There are those who choose otherwise in ADDITION to all the natural ways we use. If you look at the Fibro 101 sticky it mentions many, many ways with exercise, diet, supplements, etc. to help.

But there are many, extremely well known and reputable Drs. who treat Fibromyalgia who believe in medication as an adjunct treatment.

As I mentioned, it seems your anxiety has been severe even since this spring and that your Fibro symptoms have come back strong and that is a long time to suffer with all those symptoms. That is why I was curious that if your way is so wonderful...why do you think it hasn't been working as well?

Again...it's all about choice...and your way is no better/worse than anyone elses. It's all about what works for someone and what they decide with their Dr.

Post Edited (Snowbunny21) : 10/1/2012 10:39:17 AM (GMT-6)

Posted 10/1/2012 4:26 PM (GMT 0)
James, I was just going to ask you the same question...What are you doing to help your fibro?

Like snowbunny said..."There isn't a right or wrong."

I started taking Savella just after it was introduced in the US.
From my research I had learned that fibro patients had lower levels of neurotransmitters that reduce pain transmission, including norepinephrine and serotonin. I'm not saying it is for everyone, but it has helped me.

Exercise, diet, relaxation therapy...a combo of deep breathing exercise along with meditation help me. I consider myself to be very positive and proactive. I do have an open mind and I am hopeful for cure.

I know there is lots of research being done to prove that fibromites process pain differantly from other people. Someday, I believe there will be a cure.

Hugs, Robin
Posted 10/1/2012 4:41 PM (GMT 0)
norepinephrine reduces pain then makes it worse
Posted 10/1/2012 4:54 PM (GMT 0)
Again..just one of the "theories" that you are touting.

I guess I am really confused on what your purpose is on these boards.

This is a place...even a "family" of sorts that support, encourage, and empathize with one another.

It is not a place for a so called medical professional to claim that their way is the only way and continue to tell everyone this.

Just because you have research as your background does not make your words anymore true than what people decide with their Drs.

How can you explain all of those here who happen to be on a medication like Savella, Cymbalta, Lyrica or a muscle relaxer in addition to their non medicinal modalities and are doing well managing their symptoms?

Our point is that your way will hopefully work for you...it does not mean it's the way for everyone.

It is obvious that all of us, no matter on this board or any of them on this site believe in doing all we can naturally to help our health issues. But when needed, medication has a very real place in treatment and has helped many people in this world with all kinds of illnesses.

Please be respectful of those who choose differently than you. We are trying to be that way as well but you keep stating things as "facts" instead of just the way you choose to handle your issues.
Posted 10/1/2012 4:59 PM (GMT 0)
This is hard science not theory - but as one of my medical professors told me a patient that argues for their condition gets to keep it
Posted 10/1/2012 5:08 PM (GMT 0)
I can't stress enough...it's only one theory from the two Drs. that you listed...Please stop making it like this is something that all reputable Drs. believe.

And my Fibro has been controlled for over 15 years now with natural modalities and a muscle relaxer when needed....you are the one stating that you are having great problems with your Fibro as well as severe anxiety for many, many months. So you were the one asking for help with all your symptoms.

That is why others have tried to help by offering suggestions but you don't seem open to any of them.

I hope your way will soon provide relief for you in both areas of your Fibro and anxiety.

Post Edited (Snowbunny21) : 10/1/2012 11:53:59 AM (GMT-6)

Posted 10/1/2012 5:47 PM (GMT 0)
One theory among many, with several proponents. That does not necessarily make this particular theory the only correct form of treatment.

When you demand that others accept your point of view as valid, it affects your credibility. It also alienates others, when you state baldly that their choice of treatment is wrong.
Posted 10/1/2012 5:52 PM (GMT 0)
Remember, the way fibro affects one person can be completely different than another person. I won't take the fibro drugs or antidepressants and have found other ways to maintain a quality of life. Quite a few of our members are like me but we also know some people are unable to do what we do and still have quality of life with this illness. We respect one another 's decisions. That's between their doctor and them.

There has been a lot of testing behind the medications being used. Also, I am not sure that what you are talking about is hard science. According to Gupta, there haven't been blind studies done yet. If this was truly scientifically proven, I do think most doctors would know about it.

Sherrine
Posted 10/1/2012 7:48 PM (GMT 0)
Friends,

I don't see James as preaching so much as disagreeing. I'm glad he's expressing his opinions. Who knows what doctors will find out about fibro in the future. These two doctors might be on to something, then again they might not.
Posted 10/2/2012 5:00 AM (GMT 0)

getting by said...
I don't think your opinions are necessarily right. Unless maybe I got the one percent of psychiatrists that aren't drug pushers. I think being a medical professional, as you say you are, that you are not open minded to how things work here. 99% of all psychiatrists are not drug pushers. Sure they don't counsel, they write prescriptions. That is what they do. I see a psychologist for counseling and a psychiatrist for my medication reviews.

I hope that from now on you can keep an open mind. It isn't all or nothing. There are shades of grey, not just black and white. We are all different and different things work for different people. We all have our daily battle with fibromyalgia. If you can get better without meds, more power to you.

 

maybe the statistic is off a litlle. but not much. I have worked with local mental health institutes, I have seen many youth struggling and reaching out for help and all the mental health office does is add a new med or change to another.... and lots of time they do this without even following the proper protocol for time allowed for med to work or for time between changing meds , causing these youths to struggle with awful symptoms from drug combination. instead of knocking someones opinion, you should be thankful that you did NOT fall into the majority.

Posted 10/2/2012 5:18 AM (GMT 0)
SimplyUs, you should report your local medical institutes if this truly is going on. I personally know of many people who have been helped by antidepressants. My husband was one of them. He saw a responsible psychiatrist and this doctor helped give him his life back. My best friend couldn't function without the aid of an antidepressant.

Yes, they can be abused...like any medication. I think the key here is to choose your doctors carefully and report any abuse that you see and KNOW shouldn't be happening. The young people you talked about needed their parents to be involved with their care, too. Doctors are not gods. There are some bad ones out there and should be reported but the vast majority of doctors are dedicated and practice medicine correctly.

Sherrine

Sherrine
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