CDC still plays dumb on what causes Fibromyalgia

reply to post by FissionSurplus

It does behave like a viral infection. It feels like the worst flu ever, where even the breeze on the skin hurts. Yet the government still pretends like they have no idea what is causing it.

It is a retrovirus like HIV / AIDS.

Yes it does, you constantly feel like you have flu like symptom and there is joint pain and soft tissue pain.

I remember hearing years ago it was some sort of retrovirus and that people that had mononucleosis when young were more prone to come down with it later in life.

And the fog you are always in a fog.

So how are you guys treating it, I would only do natural treatment, no herbal remedies either, only diet.

any suggestions?

thanks

Originally posted by FissionSurplus
reply to post by sheba2011

 

Sorry that you have it too!

It does behave like a viral infection. It feels like the worst flu ever, where even the breeze on the skin hurts. Yet the government still pretends like they have no idea what is causing it.

It is a retrovirus like HIV / AIDS. They had no problem admitting that HIV is a virus, but they were quick to say it was due to homosexuals being promiscuous. Because that tended to infect a small, unpopular population, they weren't shy about saying why.

But Fibromyalgia, and all the other fun little autoimmune disorders, they have to pretend that it's nothing....Not only because they have culpability in its creation and spread, but also so that insurance companies don't have to pay out for disability.

Well, I don't know about the conspiracy theory part, to be honest. A lot of money and research is spent around HIV/AIDS, but not just that. It's spent on MS and diabetes and many of the other diseases listed in that link you posted.

My doctor also says that it is a disease of the myofascia, and he readily admits doctors just don't learn a whole lot about that -- maybe they spend one day on it. There was one explanation I read, that describes the myofascia as like a whole-body wool sweater. When in a flare, it's like the wool sweater has been shrunk in the wash, making it difficult and yes painful to move and have full range of motion. I don't know about you, but that is the best explanation I ever read for what it feels like.

I saw you had your fingers swell up? I had that too. They turned purple, the swelling was that bad. I got the full range of tests with that one -- but still, nothing turned up. Except one test, the one that can indicate Sjrogen's, Lupus, Crohns, Sleroderma, Mixed Connective Tissue Disease. I forget what else.... that one showed an abnormal result but didn't match any of those. Doctor said "that means your immune system is fighting off something." "A virus?" "Probably." "What virus?" "An unknown one."

So, I would gather that there are scientists who are studying a possible virus connection; they just haven't found one yet. Hope is not lost. Just wish they'd hurry up.

reply to post by sheba2011


I do know that "Substance P" is found in the spinal fluid of fibro sufferers. Substance P means that pain is felt more acutely, and for longer periods of time, so any injury or surgery is gonna hurt more, and longer.

Whatever the mechanism, the offending agent is the mycoplasma infection. As is common with women with the disease, I ended up having a total hysterectomy due to it. It took me a lot longer to recover from it, and I was in such incredible pain after surgery that they had to pull out the synthetic "big guns" of pain medication, used rarely, because the morphine didn't come close to touching the pain I was in. It was crazy, it was only a laproscopic procedure, it should't have been that bad, but us fibro sufferers will feel things 100 times more than the non-fibro person.

Originally posted by Stormdancer777
reply to post by FissionSurplus

 

It does behave like a viral infection. It feels like the worst flu ever, where even the breeze on the skin hurts. Yet the government still pretends like they have no idea what is causing it.

It is a retrovirus like HIV / AIDS.

Yes it does, you constantly feel like you have flu like symptom and there is joint pain and soft tissue pain.

I remember hearing years ago it was some sort of retrovirus and that people that had mononucleosis when young were more prone to come down with it later in life.

And the fog you are always in a fog.

So how are you guys treating it, I would only do natural treatment, no herbal remedies either, only diet.

any suggestions?

thanks

edit on 093030p://bMonday2012 by Stormdancer777 because: (no reason given)

I never had mono. The irony is, I rarely get sick. Never have flu or colds. My doctor says I have an awesome immune system. I cannot remember the last time I was sick with so much as the sniffles. It's been over 10 years.

I am currently in remission, but I've been dealing with this on and off for 25 years. Over the years, I have tried EVERY possible diet/elimination strategy you can imagine, and I find zero connection to diet. I would not bother going down that route (but of course eat healthy because it certainly can't hurt).

When in a flare, the best treatment is fibro massage. Have your doctor recommend a physical therapist or massage therapy who is skilled specifically in this -- it is very different than any other massage. (If you're like me, any typical massage sends me flying to the ceiling in pain). It's very simple, and you can learn to do it yourself at home, with massage balls and some help to reach spots you can't yourself. Basically, the practitioner places his/her finger on the fibro pain points, applying some pressure, and holding the finger there for awhile. You feel the tension in this pain points release. Then they move on to the next pain point, and repeat.

Yoga is great.

Low-dose valium, as needed. Especially taken if you know you are going to have pain, like at the dentist or if you strain your back. To nip the infinite pain loop in the bud. We aren't talking much here at all. For example last night I slept funny and woke up with a sore back. Since back strain has been known to set off a flare in the past, I took 4 mg Valium today.

Ice water baths or dips in cold ocean water. It gets the blood flowing.

Laying around on a beach soaking up the sun always seems to help; it's not a cure, but it helps. I did try Vitamin D once, thinking maybe there was a connection, but it did nothing for me. And besides, my Vitamin D levels test high (all my vitamin & mineral levels are in the excellent range -- I eat a clean diet).

Adequate sleep is really important. Melatonin is working pretty well for that these days, though I haven't tried that during a flare.

Get a new mattress, the best you can afford, every 10 years.

Hanging out with people who make me laugh. It's true.. laughter is the best medicine!

I have done pretty much every standard PT there is, as for the longest time they thought I was having repeated sports injuries. But the PT always made me worse, not better. So I don't recommend that. Also I do not recommend chiropractors at all. That also made me worse.

Hope that helps -- I know it's not much.

reply to post by Stormdancer777


Ah yes, the super-duper "fibro fog", in which you couldn't think your way out of an open paper bag. Not to mention the aphasia, or inability to remember the names of things. So frustrating!

I have U2U'd some individuals as to what I do for my fibro (which is also turned into rheumatoid arthritis, and my joints in my hands are deforming...also quite painful).

Diet alone doesn't do it for me, I have to supplement:

(Note that all these are available on Amazon.com, except for the Ester-c, which can be purchased at a drug store or Wal Mart)

WELLNESS FORMULA by Source Naturals
B-COMPLEX 100 by Solaray
ESTER-C 1000 MG (available at drug stores)
VITAMIN D-3 (BIOACTIVE) by Solaray
TURMERIC FORCE by New Chapter
ZYFLAMEND by New Chapter
WHOLE MEGA FISH OIL by New Chapter
CAL-MAG CITRATE 2:1 RATIO by Solaray

I also use SAMENTO ANTIMICROBIAL liquid by Nutramedix. This helps a lot, but must be started on slowly and then build up to a high doses. Please see: www.turnaroundyourhealth.net...'s-Claw/B61.htm for dosage recommendations and other information.

I pretty much take Samento from September through January, and then take a few months off, and start again. It really helps a lot with pain and exhaustion, I highly recommend it.

Also, cut out sugar, all carbonated beverages, and most grains (especially wheat), which cause inflammation. Exercise when you can (light walking, a little bit of lifting small weights, yoga, etc). You will start to feel better very quickly!

reply to post by sheba2011


I never had mono either. I think the mono connection came from the discovery that patients with this disease show an "activation" of the Epstein-Barr virus, which is normally dormant in everyone. People can carry the EBV and not ever had mono. Apparently, the mycoplasma allows the EBV to reactivate. More fun at the cellular level.....

Vitamins and supplements have worked wonders for me, as I was terribly deficient in nearly everything I needed. I used to have an excellent immune system....not any more, it's completely destroyed.

Heavy exercise doesn't work well with Fibro, because for some reason, with this disease, when we exercise hard, our body temps drop, rather than raise, and we get crazy dizzy like we're going to pass out. Yoga, some weights, and light walking are best.

Thanks for your input, I like to see what other people are doing to help themselves through this!

reply to post by FissionSurplus


Anyone I've ever known who claims to have this "disease" has been completely, totally, absolutely nuts. Just crazy. Often they have numerous other health issues, especially depression. IMO, it's psychological.

Originally posted by FissionSurplus
reply to post by sheba2011

 

Heavy exercise doesn't work well with Fibro, because for some reason, with this disease, when we exercise hard, our body temps drop, rather than raise, and we get crazy dizzy like we're going to pass out. Yoga, some weights, and light walking are best.
!

edit on 24-9-2012 by FissionSurplus because: spelling

Yep, tell me about it! I used to be into heavy exercise. Hence why I kept getting viewed as having a sports injury and sent to PT's and sports therapists. In a way, i suppose that was good, as it's better than getting the whole "it's all in your head" run around.

And yes, I have noticed when exercising my body temp drops, and I have nearly blacked out numerous times. Also -- do you track your heart rate? My heart rate during a flare is crazy low, as in marathoner low -- yet this is when I'm terribly unfit; it makes no sense at all.

I had to give up the heavy exercise and resign myself to yoga and light walking only. I don't do weights, not even light ones. It's really difficult because I miss running. My doctor keeps trying to get me to go swimming -- but I hate swimming. As much as it sucks to be so inactive these days, I have to admit, it's kept the fibro at bay.

My doctor still says to me, "Exercise can never hurt. It's okay to jog and lift weights. It's good for you." And I want to bop him over the head. Because he always says it when I'm in a major flare, and walking to the friggin' mailbox or lifting pots to cook dinner is just impossible.

Originally posted by Rockpuck
reply to post by FissionSurplus

 

Anyone I've ever known who claims to have this "disease" has been completely, totally, absolutely nuts. Just crazy. Often they have numerous other health issues, especially depression. IMO, it's psychological.

If you had the kind of pain we lived with, you would also be depressed and probably go nuts too.

Don't confuse cause and effect.

I have had Fibro for over 35 years. The quickest thing that can tick me off is the phrase "







" You don't look sick!"

Click here for more information.

reply to post by Rockpuck


I try to be as polite as possible to people who post on threads that I start. However, I have to admit, what you keep saying is not only insulting, it is also demeaning, degrading, and shows just how uninformed you are about the topic.

If you had actually read my entire OP, you may not be so quick to say what you just said. It's the equivalent of me saying to you, after somebody has kicked you in the coin purse, that it is all in your head, and you're crazy for screaming in pain.

Yet, there is a definite reason for your pain, and your slightly crazed behavior as you're rolling around on the ground whining, and it's not all in your brain. So it is with us. We have a chronic viral infection, and it causes many symptoms, one of which is some mental struggling with thinking and reasoning when in a flare-up.

If you choose not to educate yourself on this matter, that's fine, but coming on my thread and calling us crazy is unacceptable. Troll someplace else.

reply to post by EternalWatcher


I too have gotten the "but you don't look sick" statement from people who equate feeling sick with looking sick. I always want to shoot back, "but you don't look smart"....but I refrain, because it is better to educate others than to slam them.

I blame TPTB, for keeping the medical establishment, and therefore the population at large, in the dark about this, and the two decades of the CDC saying it is caused by unhappy, middle aged women looking for attention only adds to the criminal negligence of the medical community when it comes to this disease.

Any culpability of the government for introducing this germ into the populace can be neatly swept under the rug with this attitude. Now that young children, and men, are coming down with it as well, they can hardly use that excuse anymore, but it still is pervasive in certain segments of the population, as rockpuck's posts show quite plainly.

reply to post by FissionSurplus


You've stated that the CDC is covering up this disease. For what purpose? Why would they do it? How is that the vast majority of medical professionals agree that it's not a physical issue? Could it have been weaponized? Sure, it's possible, except that in every other case of theories regarding weaponized viruses there is PROOF that it is indeed a virus. Not so with Fibromyalgia.

Sorry if it offends you. Sometimes the best help someone can get is the truth. Perhaps you should visit a psychiatrist instead of a doc for pain meds.

reply to post by Rockpuck


Boy, you just haven't read the whole thread, have you??

I don't visit the doctor for pain meds, I made that very clear. You make statements without reading through the information. I don't need a psychiatrist; I think however, that you need a course in reading comprehension.

Most doctors now KNOW, or suspect, that there is a viral component. The CDC has been non-cooperative because it is a government agency, and the government is responsible for this germ. Why they would do it is the million dollar question. It was originally formulated and weaponized to be used against the enemy, I think, in the original testing phase, they didn't realize that it was communicable, and thought their test subject pool would be small. Jim Marrs feels it is part of a larger eugenics agenda. His words, not mine.

What you state is not the "truth", it is your subjective and insulting view of people who are genuinely suffering. I have found quite a few doctors in the past few years who now accept that it is caused by a virus 'of unknown etiology", but nevertheless, there is a reason for it, and a reason why the bloodwork is so off in people who suffer from this. There are many abonormalities that are found. Do you dismiss these findings because you know better?

Seriously, you have a right to your opinion, but to come onto this thread and tell us we need shrinks because we're all crazy is just messed up, cruel, and unnecessary. And that's all it is, buddy. YOUR OPINION, which means nothing to anybody who is informed. Shame on you and your glaring lack of compassion.

I'm going to bed now. I'll be happy to address any questions or further posts in the morning.

reply to post by FissionSurplus


It is my opinion.. I said it's entirely possible for it to be a virus or whatever. I just don't see the evidence (and I did read your OP and the links, though some sufferers who posted did not at all help your cause....) Sorry to offend you.

Thank you for this thread!! Havent read it yet, I need to be really informed about Fibromyalgia which I dont think I really have but my Doctors think I do and gave me Lyrica. I've tried taking the pills but I just cant. I've been suffering with pain for almost 5 years now and I refuse to take those pills or any other pills.

I admit I'm ignorant when it comes to this condition but due to a head trauma, thats how everything started. I will be reading this thread in a bit but if any members have any input as to why I am being diagnosed with Fibromyalgia? Till this day Doctors hasnt pinpoint the main cause of my pains.. and i dont know if i should add this but Nerves tests shows nothing wrong with them.

I completely agree with the OP. I have suffered from M.E. since the year 2000 and having researched into it more recently i have also come to the conclusion that the disease is caused by Mycoplasma. Britain has a hidden M.E. file that cannot be opened until 2071. They are hiding something and i have no doubt that something is that it was made in a Laboratory by American Government Agencies. There are an estimated 250,000 ME (CFS) sufferers in the UK alone. Think about the cost of compensation and the lifetime support of disability benefit's . No! better to call them workshy crazy malingerers that way they get no compensation and thrown of benefit's. I'm afraid it's a genuine conspiracy theory and one that people should give a lot more attention to.

reply to post by FissionSurplus


That is why all of the sudden the "west nile virus" is spreading across the US. I have thought fibro and CFS was an auto-immune disease, that is the by- product of overuse of antibiotics. Back in the 90's it was a catch all diagnosis. In other words if a patient had ambiguous pain and been to multiple doctors then a doctor would tell them that they have fibromyalgia, and OMG that doctor was the greatest doc in the whole wide world. The diagnosis started as a joke in the medical community as all it means is FIBRO - fibrous tissue, Myalgia-pain.
So a doctor named it fibromyalgia- painful fibrous tissue, and to the medical community that is all it means. I call it CTD, Connective tissue disorder cause that is what it truely is as fibrous tissue is usually associated with scar tissue. The common thread among all FM patients is depression that is deeply rooted, I personnally believe that the depression is based on not feeling well and the inability to be able to participate in everyday life like they did when younger. Which comes back to the autoimmune diseases, as with these diseases the common factor is depression and fatigue as in EBV, Lupus, Aids,etc......I have found that these people respond better on certain supplements and using certain essential oils as these build the immune system. Frankincense is great as an anti-inflammatory for example. Most of my patients have left the big pharma in search for other treatments as all the big Pharma does is treat symptoms and not causes. So In the area I work most are going the natural route to their healthcare and I must say with amazing results, of which, the FDA does not let me disclose as we cannot say anything outside of BIG PHARMA heals or has healing properties you can only say it "helps with". My only beef is that Big Pharma should not be able to say it heals either, because at best they subdue the symptoms they do not cure! People keep blindly taking them and keep getting flu shots, and get their kids innoculated. And we wander why we have diseases like Fibro myalgia?