CDC still plays dumb on what causes Fibromyalgia

Originally posted by Stormdancer777
reply to post by sheba2011

 

you can feel the knots all over my body.

Yea mine too, and it has been bad lately, I have these painfully soft tissue knots everywhere.

Please give fibro massage a try. Not every massage therapist knows this; ask your doctor for a referral. I believe this is the "official" term for it:

en.wikipedia.org...

You can also try-this-at-home:

www.yogatuneup.com...

You basically get a set of these yoga balls, place them under your back at the fibro trigger points, and relax into them to release the knots. Yes, you may feel some pain at first, but as you relax and lay there on the balls, you should feel the tension releasing. If you google around, you can find images showing you where these trigger points are -- but I have found that it's pretty easy to figure it out yourself, through trial and error and what feels good.

Edit to add: DO NOT USE TENNIS BALLS for this!!! You need a soft squishy ball. I highly recommend the yoga balls.

reply to post by Rockpuck

The diagnosis was confirmed 4 years ago by a rheumatologist and 2 other Drs.

You should also know that I was followed by 2 psychiatrists 2 years in a row before I knew I had fibro.

If 2 Ph. d says I'm mentally stable, then the only answer that remains is...

Here you go - this is an excellent article and it explains it better than I can. This is very much in line with what my GP has explained to me, and fits with my experience:

chronicfatigue.about.com...

Apologies as I see from this that the fibro massage targets trigger points, which are different than tender points they use for the diagnostic test.

I'd never heard of the term "central sensitization." How my GP explained that part: "There is some truth in the 'it's all in your head' theory. By that, we mean that there is some brain/body connection with fibromyalgia. Basically, your brain gets stuck in a pain loop, long after the original source of injury is gone. The pain is very real -- your brain just gets stuck signaling that you are in pain."

He told me about the mirror trick they use for phantom limb pain. You can google it if you like. And said it is "similar idea."

My mom has Fibro and she has now ruined her life by taking too many pain pills prescribed by Doctors. All she does is sleep and wallow in pain now.

Textreply to post by FissionSurplus


thank you for this info, it is something I have always suspected. I have Fibro and got it after a bout of gastrointeritis. I have had it for 18 years at least and it isnt getting any better. They say it is not a terminal disease, but by God, sometime it feels as though it bloody well should be! I am on heavy duty pain medication which really doesnt help, and I have various other things wrong with me - depression being the main other thing. I guess I just wanted to join the folks on here that have this nasty illness and say 'hi'. Oh, yeah - when I was first diagnosed, my doctor said 'It's Fibro, dont worry, its all in the head...' I left in tears. However, he was right in a way as it has been proven that folks with FMS have a reduced blood flow in the brain, causing the pain receptors to go crazy..

So I had a lot of fatigue, pain, depression, etc..symptoms are just signs that something's wrong. The label encapsulates the symptoms, but there's so many causes. I figured using unprotected sex with over a dozen+ ladies probably played a role in my illness. Many of these microbes aren't checked with a standard STD test, yet can be transmitted that way. It didn't manifest until severe trauma later on. These pathogens can lay dormant and activate once our bodies are jacked up. Basic strategy in warfare. Attack your enemy when he is weak!

I took an integrative approach to getting well. I looked at the cluster of symptoms, did a lot of research, and tried alternative health protocols that worked on many of the origins of the majority of the symptoms. First thing I took seriously was getting the gastro tract in line. Bomb the hell out of it, then replenish with probiotics. You want to use bombing agents that target things like candida, h pylori, c. difficile, etc...I choose wild oregano oil, peppermint oil, thyme oil, & clove oil. To repopulate, try a wide variety of good reviewed brands of probiotics. I found bio-k to be a good base to start with. Cycle from bombing to repopulating.

Diet is a must. It seems some of these pathogens love the sugar. You have to go through a bit of hunger pains to get well/better, but it's worth it in the long run. I had a solid year diet of pure meat. Lots of chicken, turkey, and beef. Your body will adapt, and it will do well to keep things like candida at bay.

The correct approach, in my assessment, is to realize that each notch of fatigue indicates a higher pathogenic load sucking out your bodies energy resources. Some pathogens cripple your energy production at the mitochondrial level, then co-infections which usually wouldn't be an issue under normal energy balance become chronic. So treating the co-infections alongside the energy deficit is key to getting well/better.

In the above video you can see Dr Nicolson mention the need for antioxidants to combat the ROS which are produced as a result of these infections. I choose an easy protocol of water soluble vitamins to help out integrally for my set of symptoms. This was a naturally sourced b-complex, high dose of niacin (INH), and high dose of ascorbic acid (vit-c). I now take reduced amounts of the above, which keeps me well until a flare up, then I increase dose until it subsides.

I now try to include things in my diet to keep the gastro tract healthy. Whole foods, lots of spices (especially turmeric & cinnamon), filtered water. As long as I don't have stressful events which cause flare ups, I'm basically well. Before trying any of this stuff I could barely walk around the block without nearly collapsing/fainting. That was 7 years ago. I slowly increased my fitness level as I took out more pathogens and rebalanced my system. Now I can do things like interval or strength training at high intensities without much worry. The only thing I need is an extra day of recovery compared to average. Huge improvements!

I don't have this awful disease my self. but I do know some people who do . They suffer terribly, and I truely feel for them and everyone who has this.

So this is a product of bio-warfare .....well no suprise there. I have become convinced that the CDC and the FDA are controlled by big pharma. And as we all know big pharma doesn't want any cures they want treatments that never cure. My goodness how would they make money if they cured things. I'm not really suprised that the research and the drug to cure the disease is being supressed.

I have felt for a while now that these companies create these diseases and then come up with a treatment that will go on and on to make money. What scum they are. I wonder what they will infect us with next?

Fybromyalgia has the same symptoms as opiod dependance and withdrawl. I bet they are connected in some way. I dont think it is a virus at all.

reply to post by FissionSurplus


I have lived with this and few other intestinal problems (that I believe are related) for a few years now. Being a Male has even been an obstacle to finding a cure or at least a way to deal with it.

I believe it is viral and is meant to cause general fatigue, exhaustion, and malaise, but not to the point of dying only to point of causing depression, pain, apathy, and lethargic behavior.

Keeps people in check…

I have Chronic Fatigue Syndrome since I was 8 ( I'm 35 now ) ... the cause of CFS is still considered unknown because doctors can't agree on it.. there are so many things that can cause all the various symptoms that go along with it that the general practice is to treat the symptoms and not the root cause..

Very little funding goes into researching CFS because it's not considered life threatening.. though the symptoms are definitely detrimental to your every day life..

The biggest two issues I deal with are a horrible short term memory and inconsistent sleep patterns.. Most of my life I've had issues where I am either dealing with insomnia, or I sleep forever and wake up feeling like I haven't slept at all! .. My doctor said that she's seen cases of this after someone has mono .. as though mono starts it but it doesn't go away .. I can spend weeks at a time feeling great and then suddenly not... it's always been like that for as long as I can remember =) but if you see VHS tapes of me before I was 8.. I was a hyper, talkative, super happy kid

I don't have of the pain aspects of CFS .. I don't have headaches, muscle or joint pains..

I think one of the BIGGEST problems are mis-diagnosis .. people who are experiencing the pain might be Fibromolaysia related.. since both are listed as unknown as to the cause then I suspect misdiagnosis would be common since they share some symptoms ..

I'm pretty sure I have this.

Would scoliosis cause this?

Or would I have post polio?

because my scoliosis is from birth.

geez it's unbelievable how widely encompasing these diseass are...... when I was about 6 or 7 years old I was involved in a car accident, in which I was fine, however my Mother sufferd severe neck injuries... being a full time mother to 3 children and married to a man who didn't give 2 stuffs, she continued to do everything despite her injuries.... 6 months later she was permemnantly bed ridden (at which time my father left) and it took YEARS to get the diagnosies of Cronic Fatigue Syndrome and Fybromyalgia.... we attended many of the same doctors (as i have sufferd physical problems from birth), Me they allways wanted to cut up, but apparently she was a mentaly ill faker according to them.... I can tell you from sitting by her bed side for my entire childhood (well from ages 6 or 7 til about 18 or 19) that these illness are VERY REAL!!! it screwed up all our lives......

sorry.... bit too depressed to elabourate further now... great thread none the less

Love, Light, and all that crap....

Thanks y'all for sharing your stories, and your ways of dealing with your illness.

Diet is key (moniesisfun is correct, sugar only feeds the little buggers and makes it worse). Supplements are key, especially the supplements with spices such as turmeric. A poster suggested Selenium. I take Wellness Formula, which has Selenium in it. Massage, light exercise, vitamins.....there are many things we can do to make it easier, but nothing seems to get rid of it.

At this time, I want to bring up Dr. Shyh-Ching Lo's patent for the US Army, #5242820.

Dr. Garth Nicolson, President of The Institute for Molecular Medicine, and Joyce Riley of The American Gulf War Veterans Assoc., among others, feel that Gulf War Illness is spreading to the general public and is being divided up into separate disease labels such as those listed above. Many patients with these disease labels are sending their blood to be tested at The Institute for Molecular Medicine and The Bowen Lab, are finding they are infected with mycoplasma and or the Lyme Disease organism. The Bowen Lab specializes in testing for the cyst form of the Lyme organism and for Erlichiosis and Babesiosis (other tickborne infections). Mycoplasma and the cyst form of the Lyme spirochete are being found in much of the chronic illness population. Mycoplasma Fermentens Incognitus, one of the most common strains being isolated, is patented by the U.S. Army and Army pathologist Dr. Lo. Lo,Shyh-Ching-Pathogenic mycoplasma - U.S. Patent 5,242,820 issued Sept.7 1993

"Now if Saddam Hussein had wanted to kill our soldiers, he would have just outright killed them with mustard or cyanide, right?" reasons Captain Joyce Riley. That wasn't the plan," she continues. "The plan was to give a country a disease that they would bring back to their families. What better way to give a country a disease than to give it to the military, who move all over the country.?"

Captain Joyce Riley has been the crusading voice for Gulf War Illness veterans. I believe there is a connection between the biowarfare / DoD complex and the strange illnesses plaguing not only veterans of the first Gulf War, but also the general population. It is thought that the soldiers, sailors, marines and airmen were given the mycoplasma via the numerous anthrax vaccines they received. There are stories that state that it was Saddam Hussein who used bio weapons on the military while overseas, except that there are many who came down with it who were never deployed, and many who came down with a mycoplasma-type disease after receiving the vaccines, well after the first Gulf War ended.

Please see: www.fda.gov...
This is the statement of the mother of Kristin Shemely, a sailor who received a total of 4 anthrax vaccines, and subsequently came down with ALS (Lou Gehrig's Disease), and died two years later from the disease. Note page 6, which talks about Dr. Lo, his thoughts about what causes these diseases, including CFS, and it also names the patent.

I cannot help but wonder if I somehow picked up this bug courtesy of the Army, as I worked on an Army base in the education center from 1994 - 1997.



Consider carefully what is being done to the population. Somebody sent me a U2U stating that, by creating this monster and letting it loose on the population, it was, in effect, "jump-starting" our evolution to the next level, by weeding out the more sickly ones and creating a stronger human. I don't think that TPTB think of it in such a way (and the sender didn't think so, either, just making a point about evolution of humans and microbes). I think it is part of their desire to keep us all sick, somewhat helpless, and unable to fight their ultimate agenda. Between the GMOs, the many toxins in our food, water and air, the ridiculous amount of vaccines, and all the radiation we are undergoing, our immune systems are being taken down to a level in which the diseases are able to take root. The last part of the puzzle is to eliminate the ability to get our own vitamins and supplements so that we can help our immune system to fight back (Codex Alimentarius).

We are under attack, in such a stealthy and sneaky way, that most people cannot believe it....Until they get sick.

reply to post by FissionSurplus


it has been clear for a long time that all the government agencies who's jobs it used to be to protect the public are now working with a totally different agenda.

I am wondering if they ever bother to produce a "cure' for this disease if they will add it to flu shots and vaccines as they certainly will not admit what they have done.

When I was young and lived in Nevada we all started getting notice to stand in line at school for one does of this and that and shot after another, no one even asked what it was about we just did what we were told, people trusted the government.

When I had my first child in the early 70's they still were not recommending breast feeding, it had become habit because we were all full of radiation for years and instead of saying so they simply taught new Mothers that bottle fed babies were healthier babies. This is how they operate, they 'guide' our beliefs to accomplish what they want rather then tell us the truths.

Thank you FissionSurplus, your thread is the one that finally drew me out of lurking and pushed me into joining. I too, have fibro and have been looking into some of the theories behind the etiology. It absolutely drives me bonkers that no one can agree on what is causing so many of us to suffer from this.

I have read about the mycoplasmas, XRMV, heavy metal poisoning, magnesium deficiency, and several other theories. The only thing that I am absolutely certain of is that we suffer from extremely depleted dopamine stores in our brains. I used to work as an ICU nurse before having children, and used to hang dopamine to treat patients with blood pressures higher than my own. Mine normally runs about 80/50. Lower levels of dopamine also decrease our ability to fight our pain.

I have not personally tried any of the alternative or supplemental treatments. I was finally diagnosed last year after suffereing for about 10 years with the pain and fatigue. (Was orignally diagnosed with probable MS). I was first tried on topamax, then cymbalta with no relief whatsoever. In fact, topamax made it worse for me. I am now on Lyrica and it has been a complete Godsend. My only complaint is the few extra pounds it put on me, but even with that I am not overweight. Overworking myself on the treadmill normally throws me into a pretty terrible flare the next day, so now I have taken up geocaching for a fun way to get moderate exercise. Me and my family love it! One of the good things fibro has brought me :-)

Also, the reason I wanted to post in the first place was to share this video posted to YT by OFFERUtah I came across it last week while looking at some stuff online. In it, Dr. Patrick Wood explains his research into FM. He originally started out wanting to specialize in Psych patients and kept getting FM patients referred to him. He thinks that FM might be a lesser version of what the people had in the movie Awakenings. He also lets on in not so specific terms, that he believes it was possibly started by a virus. Pretty amazing presentation if you can make time to watch it. It is in three 15 min segments.



~ OkieDokie

reply to post by OkieDokie


Well, I never thought of myself as much of a recruiter, but welcome aboard!

The video is fascinating. I haven't seen the other parts of it (I look forward to this evening when I have more time), but I have read that it is partially "brain based" (NOT psychosomatic). It does creep me out to think that parts of my brain have shrunk, but I can testify to the heightened pain response, for very simple things. I have even had to give up wearing jewelry, because I constantly feel it on my skin, and it drives me crazy.

The brain is a favorite organ for the mycoplasma to manifest, and the cell death in areas of manifestation would obviously cause shrinkage. Freaky.

I have never heard of geochaching. I did look it up, though, and it sounds really cool! Too bad my husband and I don't have GPS to use (we use an older cell phone).

Thanks for the video, and an interesting insight into the brains of those of us with this disease.

awesome info comeing out in this thread.

i deal with lyme disease, a close friend deals with fibro...

our symptoms are similar but thiers is worse than mine. our approaches are vastly different with vastly different results. when my symptoms showed up about 5 years ago, i suffered for about 3 years before i realized what was happening. my initial approach was an aggressive samento regiem for about 5 months but only a slight change in diet. decreased symtems by about 75% (rather expensive but it worked) now i use diet, cutting out most oils, dairy, reducing sugars, alcohol, wheat and eating for my body type..sort of an ayurvedic approach, certain supplements, meditation and i still work out -long distance biking and martial arts. that said, this thread has reminded me that i can and should do more because the symptoms still pop up and stop me.. like a wave of water..slowly at first, then bam! my approach is and still will be 'unconventional', 'unapproved by doctors', 'unresearched by western medicine', 'placebo's ...so its all in your head' and my favorite..'that stuff doesn't work'. HA! i say!

my friends approach has been very 'conventional' and 'prescribed by doctors' , no real change in diet except a 'conventional balanced diet' and lots of pills...and thier syptoms have gotten worse and the body has been run down. it definitely seems that the more pills prescribed, the worse the condition has gotten.... hmmmmmmm

after some years of looking into these 2 diseases i truley believe that these are man made or man manipulated viruses or bacterias. all to make the population more and more dependant on the governmental system. the AMA and CDC are a sham on the american people, there to help make people believe that they cant help themselves, that 'prescribed drugs' are the only thing that can help you and everthing else is a bunch of hooey. just look at how GMOs are literaly being forced into our food supply, how the AMA gives no credibility to 'natural alternatives', things that have been used for generations to help us heal ourselves... and in some respects they want to severly limit or even outlaw certain 'natural' products. soon, gunna be lining up at the local govt office for our daily shots in order to stay 'healthy' just like they want us to..keeps you docile, dependant, subserviant......

they can have my body when they pry my cold dead fingers away from thier throat

Originally posted by FissionSurplus
reply to post by Iwinder

 

Thanks, Iwinder. Since I no longer have to work (thankfully I have a husband now who is happy to support me, both physically and emotionally), I have plenty of time, not only for research, but also for things like spacing out on TV.

Notice when they have drug commercials for Lyrica, they say that "fibromyalgia is thought to be the result of over-active nerves". Say WHAT?? To simplify it in such a matter always ticks me off. Naturally, they never say what could cause the nerves to register pain.

The mycoplasma invades cells. It can be slowly growing in a person, and usually a stressful event will trigger it, since stress creates corticosteroids, which tells the immune system to "stand down". It invades cells, since it has no cell wall of its own. This is why it is so hard to find in lab tests, it has to be done via DNA sequencing.

It steals the energy created by the mitochondria in each cell. When it's done stealing, it breaks out of the cell, destroying it. The cellular debris floods the blood stream, causing a lot of pain all over the place.. Imagine millions of cells being broken apart as the mycoplasma splits and goes to find another cell. There are only short periods of time when the mycoplasma is not inside a cell, so it's pretty hard to fight.

Thanks for your kind words. And, unfortuately, a healthy person today can become an infected one tomorrow, because it is now everywhere. Pray that you are one of the fortunate people who will never become a victim!

No problem, one thing I learned early was that whatever your illness may be, at first it seems unlike any other ones you have heard of.
After the shock wears off you get going checking out the information.
Thanks to the internet I found a lot of good information pertaining to my situation, as I am sure you did as well.

Yes Ma'am I was living large with my wife and all was good, then BOOM life changed and it was never the same.


Regards, iwinder

reply to post by clearmind


Thanks for your input. Everybody needs to find their own way to deal with this disease, in whatever way it manifests. One thing I know for sure is, western medicine falls woefully short when it comes to chronic disease. I went that route for the first 10 years of my illness, and I regret it.

They never discuss diet, but claim that you should just "get up and exercise", which always made me so angry. That's like telling a person in a wheelchair, "get up and move around, you'll feel better".

My current doctor, which I see for my insomnia (the one thing I could never fix on my own) and panic attacks freely admits that most doctors are absolutely clueless, and their only concern is to not have their patients get hooked on opiates. They have nothing to offer. They are building a new "wellness center" in town, and he has asked for my recommendations on books and resources for fibromyalgia, since he is way behind the curve when it comes to this, and he knows I research often and have lots of books.

Sometimes, we who try to blaze our own path to wellness can help the medical establishment get caught up. They don't have the time to research, and so I feel it is my duty as a human being to help others by passing on whatever info I find. Thank God my doctor is open minded and honest about the situation, a rarity these days...But I'm in a small town, so the doc has plenty of time to hear me out and for us to discuss this disease in depth.

The day I decided to stop seeking help from doctors for fibro was the day I felt like I had my life back as my own, thrashed and ruined as it was.

Some days, I feel pretty good and like to move around. Other days (such as today), I feel like crud and am not moving around much.

I have pretty much limited my diet to meats, veggies, water, tea and decaf coffee. It has helped a great deal with the inflammatory response. I walk and move about when I feel up to it. I am very jealous of my sleep time, and I do dope myself up in order to get a decent amount of sleep, because without good sleep, I am almost bedridden.

I do still take Samento, as it does help me, but getting up to a theraputic dose is a rough ride. Some days I'm raring to go, other days, especially as I up the dose, I am herxing badly and so I don't do much.

Sometimes, when I'm sitting there feeling absolutely crappy, I sit and imagine the creeps who let this monster loose on the population. Are they laughing? Feeling guilty? Or waiting for people such as myself to die? Like you, I have no plans on checking out. Why give them the satisfaction?