New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Attention: Awesome1
8 Replies
Fantod - December 31

While I appreciate your enthusiasm, your frequent posts about yout new cure for Fibromyalgia (FMS) are both inappropriate and annoying. One post would have been fine but I see that you are responding to other people under every category.
That is not the intent of this forum. I would appreciate it very much if you would stop selling your new FMS fix here. Thank you.

 

Canada17 - December 31

FMS fix? If it's a fix then why doesn't every doctor who treats FMS know about it?

 

tnichel - December 31

I'm with Fantod on this one. Many of us who are battling fms come to this site for support and information. It's annoying to have someone pitching miracle cures when most of us went years before getting a diagnosis and have tried everything to get better. You also may be giving newbies false hope or just wrong info. It's not fair to them to think there is a possible cure only to find it untrue. Please think about these things before you begin posting all over this site. You are not the first and will not be the last but don't go overboard.

 

Canada17 - January 1

First, let us be clear that Mirac and GlyRite are not medications and “Mirac is exempt from FDA approval under the Dietary Supplements Health Education Act of 1994 (“DSHEA”). Mirac does meet all the requirements under DSHEA.” That is a quote directly from the Mirac website.

I don’t know about other Fibromyalgia (FMS) sufferers on here but I know that I don’t “make friends” with my doctors, or any scientists for that matter. My health is too important. I trust my doctors’ advice, however, we all need to do our own research and keep a watchful eye of any new side effects that could be caused by new treatments. Treating a doctor as a friend puts a blind faith in their ability to provide us with care that will not cause us harm. For all the education doctors have, and for all the good they do for us, we cannot overlook the fact that they only know what is common, unless they are a specialist, and even specialists don’t know everything. FMS is such an awesome disease that they cannot accurately predict how one patient will react to a medication/treatment over another; there is still too little known about it.

I often write about refraining from prescription medications whenever possible as it is important for us to determine if there are environmental and/or dietary influences to our pain. If we can figure those out we can help to mitigate our pain and other symptoms and thus require less of a medication or none at all. But to say, “Pick your poison and go with what you think is best for you' or be open-minded with what I am suggesting” is incredibly faulty logic. Consider the fact that green tea has many health benefits; it is used religiously in many cultures. However, there are many people, including myself, who have a nasty side effect – increased blood pressure and heart palpitations. For all the good green tea has, it is poison to me. And contrary to what you may believe, a great many of us knew what was best for us before any of our doctors figured it out.

You say you are on a “crusade” to have us all adjust out mindset. Perhaps it is you who requires an adjustment though. Are you the new FMS messiah sent here to deliver us from our pain? What gives you the right to dangerously promote a supplement as a cure to FMS? You write more like an advertising agent than a patient. I say dangerously because there is no prescription requirement. I can order this supplement right now with a credit card if I so desired. If I was foolish, that is what I would do, even the website promotes this supplement well for relief of FMS pain and symptoms. However, I would be hard pressed to believe that there would be no complication with my current regimen and would need to discuss it with my doctor. Given the simple fact that I have FM I cannot trust anyone who tells me that anything is safe for me to take.

You wrote: “Realize that where FM is, there will RA be as well.” Where exactly did you form that conclusion? It is wrong. While it may be common, it is not absolute.

Realize that where there is FM, there will exceptions be as well. No two FM patients are the same.

This website is not the place for vigorous and aggressive promotion of a “miracle” cure.

 

axxie - January 2

Fibromyalgia exists. It is genetic and there is no cure. However, like diabetes and other chronic illnesses it can be treated and managed.

Your claim is pure hype at this point. Look I don't want to discount what research protocol there is, but as a person living with fibro and many others here are on this board, the one thing we don't want is, for someone come and preach about a cure for fibromyalgia.

If there was such a cure, I tend to believe that the US, Canada, Europe and many other countries would have stated and would have put together a protocol for us to take. We as patients of fibro, go to multi medical appointments, doctors try different regime, because not one or two are alike and we all suffer from the same thing.

Some cannot take pharmaceutical, others like me, can tolerate it at best and I can accomplish some things in my daily life. But that can change whenever I am tired or have burnt the candles at both ends.

Please leave this site alone, it our way for us to communicate with each other in a way that no one will preach to us but will understand, this is where man, women, children, mothers, teens and everybody who has been touched or is touched with fibro can come and rant and rave and if they have something positive to say will say so.

So while you can still pull out of our forum I would do so. We simply do not want anyone preaching to us, that one medical treatment centre can for non profit corporation be able to magically put a treatment regimen together and have answered all the questions and cure fibromyalgia. At this point, my dear it's just not possible, and one reason is, no two person has the same pain treshol nor do we suffer the same classic symptoms, but we all have fibro.

Thank you for your patronage, but regretably we are not into your miracle cure. In other words, go preach somewhere else.

 

ptalana - January 2

Well said Axxie!!!!!!!!!!!!!
;)Patty

 

tnichel - January 3

Canada17-"FMS Messiah". Priceless! Love it! Fantod and Axxie you too, great response! My brain took a vacation the day I responded. I hope all who think they've found a fix will read this and see how it makes us feel. I'm so concerned about the newbies reading that stuff, expecially the teens and those in their early 20's. They have so much to deal with already and have not developed the adult way of thinking. Such talk could be detrimental to them. Love you guys! I've actually smiled and laugh and real laugh for the first time in days!

 

axxie - January 3

Hey tnichel, I just hope that they go away.

I love this crowd, we can get ride of forum bashers pretty fast.

Hopefully, the younger crowd will see that we are not preaching, but merely giving them good advice and hopefully will see the difference.

tnichel, Canada17, Fantod, ptalana we hold are own.

 

Canada17 - January 4

:)

I would like to think of myself as one of the "younger crowd" when it comes to FM. ;) It's part of the reason that I am so passionate about it. I am not quite 27 and I have suffered from FMS all my life (to different degrees obviously) and one thing I know is that it has progressed. While it may be true that FMS is not a degenerative disease, it does seem to get worse. I think that can be attributed to the simple fact that as we get older so do our bodies and they reach a point where they are no longer growing but deteriorating and we slowly lose our ability to "bounce back" from illness and injury. (Sorry for the morbid picture)

So long as I am still "one of the best cases" that my doctor has seen, I will continue to push myself to learn more about FMS and try to help to bring awareness to it. I will offer my time to researchers...not my body though, I think the last thing I need to be is a pharmaceutical guinea pig...I've already felt like one and it's brutal! I will do this because I know that I am far better off at this point in my FMS than a great many of you reading my posts and I don't take that for granted. I know how terrifying it can be as a teenager to think you have some sort of terminal illness only to have every test possible come back normal. "You are perfectly healthy, it must be psychological." Like teenagers don't have enough confidence demons to battle! lol FMS is rarely even considered under the age of 30. I have always spoken up for myself and knew that it wasn't "just in my head".

FMS made me grow up quickly. Though I didn't know what I had, I knew there had to be a reason why so many things caused me pain when they hurt no one else. At 26, my FMS diagnosis was a relief as it could have been something much worse. The most frustrating thing though is the fact that we will all suffer until a cure is found. No matter how good we are with following our treatment regime we will always have flare ups for no "apparent" reason at all.

That is why I stand up. That is why I defend the health of those who feel they can't, or shouldn't. There are a lot of people who come here who are afraid of their FMS diagnosis, they are afraid of what they are going to lose because of it and they are desperate to find something that will just make it go away. There are people who are so desperate for a cure that they will try anything, especially when it sounds so good. Anything that sounds too good to be true probably is.

Logic has a way of escaping us when we are afraid and desperate. Maybe this supplement does have some benefit but for it to be touted as a miracle cure is careless.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question