More Awareness for Fibro?

Now that we know she has the disease, it would be nice to know what help she gets for it..

It definitely is still a misunderstood disease.

I hope SELENA recovers well.She was on chemo too for a while.

We cannot compare our health care to the celebrities as they have more resources via money to faster and better care.

Sorry to state this fact but its true.

Healthcare is a profit making business ,not non-profit.......remember that.

ASK ME AS ONE WHO HAS no insurance.

Its very difficult to survive .

Hi all,
I am new here and patently interested in fibromyalgia which I have for some years now.
I am 75 and have more than 50 of those involved with commercial animal production,and especially nutrition.
I will say here that experience is the teacher of ALL things!
My experience is that experts know more and more about less and less,and they still have no idea what causes this problem.
Experience from my early days led me to focus on the basics and with a wide view,and I have always found that nutrition is by far the primary cause of health problems.I have solved and prevented many problems with animals by getting to the bottom line first and joining the dots so to speak.I had my own feed mill so I could make adjustments and see the results.(large commercial numbers).
Animals are sooo important -after all we test many new products on animals before they are used for human consumption.
Now-re fibro-correct me if I am wrong,but this problem was unheard of some years ago but it reared its head some 10-15 years ago and appears to me to be escalating in epidemic proportion.
What has happened in this time frame?That is the question.
My view is-it is coffee.
I was alerted to this when people coming back to Australia after holiday in the US,nearly always commented on how bad the coffee was.I researched why the would be saying that,and with the way my mind is programmed I looked at the bottom line-the coffee.
Coffee is nearly always blended-Arabica and Robusta.The latter is of great concern for me.It has a higher caffeine content and is pungent and bitter.It is cheaper than Arabica which is a big flag for me with the corporate world we have now.
By far the biggest world production comes from Vietnam.It can grow at lower altitude/harsher conditions etc.etc.
I believe there is a link here with the agent orange that was widely used many years ago.Agent orange has a long half life from what I gather and it passes on in the food chain.Study this aspect and see how many children have and are still being affected with birth and health problems.Born many years after the conflict.

I'm 71 and have had fibro since I was a young child. I think they have just finally started to recognize the problem is so great. I could not even begin to list the doctors/treatments I have had over the years for my mysterious pains and other symptoms.

Use to be a big coffee drinker but not anymore.

Hopefully someday they can solve the mystery.

I don't buy into the theory about processing pain differently. I've never been overly sensitive to pain and, in fact, gave birth to three children, all naturally. I've always considered myself more pain tolerant than average, not less, and I've gotten that impression from various medical professionals (ob/gyn doctors, dentists, etc.) who have been somewhat amazed by my pain tolerance levels. So when I'm told that my problem is because I don't tolerate pain well, I'm more than skeptical.

On the other hand, I am more inclined to buy into the auto-immune theory of this disease. It seems like most of the people who have it, myself included, are prone to auto-immune diseases and have more than one.

Oh, and incidentally, I'm not a coffee drinker and never have been. But I do believe that nutrition probably plays a part, and I do tend to flare more on a carb heavy diet. I started eating low-carb when I was diagnosed with LADA diabetes in 2014, and it made a big difference in my symptoms. But lately, I'm getting more flares even while still eating better.

Hi Sherrine, and thanks! I see what you're saying, but do you see that being exclusionary of auto-immune, or could it be an auto-immune condition that causes faulty pain processing? You clearly are suffering from a number of auto-immune diseases yourself (I can see you have a lot to deal with!), so doesn't it seem likely that this is also auto-immune?

Thank you, Sherrine, for the various links. I actually looked through your links even before I started posting, and I have read a lot of this same kind of information in my own online research, but I guess what I'm asking is why we should necessarily accept the current medical opinion and dismiss the newer research. I'm doing that with the assumption that people here must be familiar with this newer research, but if not, I'm talking about this. /www.fmcpaware.org/fm-a-real-medical-disease.html From that link, the research revealed "the discovery of a major set of differences in cell-mediated immunity in the fibromyalgia group versus the healthy patients. And this discovery was opposite to what was anticipated. Specifically, while fibromyalgia patients are often considered to be 'hyper/overactive responders,' we identified that the fibromyalgia patients had a depressed immune system and, therefore, were more susceptible." And this, "This disorder relates to the production of protein molecules called cytokines by a certain type of white blood cell."

This is where the new(ish) blood test comes in, checking these cytokines for this specific pattern. From what I've gathered, some have objected to the test on the basis that some other conditions also affect cytokine patterns, such as lupus and RA, but according to these researchers, the specific pattern of cytokine production differs in fibromyalgia which is why they've been able to get such startlingly accurate diagnostic results.

The newer research actually categorizes fibromyalgia as an "immunological disorder" and not an auto-immune disorder, which I guess is not really the same thing. I'm trying to figure out if auto-immune disorders are a sub-category of immunological disorders, but I don't know whether they are or not. That's not clear to me in anything I've found yet. But I'm still kind of expecting them to eventually classify it as auto-immune. Just my gut feeling, though.

I don't know if these musings are appropriate here or if people even care about this kind of thing when they just want some relief, and whatever promise this new research might hold, if any, won't be available for a long time to come. But it's interesting to me. And I thought this might be a place to find others who are also interested.

Sure new studies are always interesting..

I think too we need to keep an open mind, since there s a lot not understood about this..

Lj

Well there s no cure , but many good ways we can get some relief and carry on..

Right now we are wedged between maria off the coast and another system coming from the west..so its been a tough day..

But ha ha, i made it..and am laying on my acupressure pad , which helps,me relax for sleep