Fibromyalgia Cause Finally Discovered! It Is NOT In Your HEAD!

reply to post by westcoast

Imagine if that were you, and instead of sympathy and support, you get labeled as crazy and your pain dismissed. This has the potential of restoring the lives of millions!!!

um, I don't think anyone was calling them crazy. They were probably calling it psychosomatic, which means the pain originates from the brain, and they just don't really know the cause.

What you said is a gross simplification.

Thanks for posting this; my son suffers from FM and he went overnight from being an athletic kid who loved fencing to hardly being able to move out of bed; the drugs he takes for it are changing his personality so much, it's heartbreaking.

I sometimes think this is all a result of low Vitamin C intake but I can't even convince him to try to up it, (up to 20 grams a day, dissolved in a drink with stevia added to turn it into 'lemonade' or make up liposomal Vitamin C with lecithin, C powder and a ultrasonic cleaner, see other threads here for lots on that.

Is it possible that FM is low grade scurvy? The recommended daily dose is way too low and I think many people don't get even that much. It is known that chronic stress or infections will burn up more C in the tissues and therefore increase the requirements.

I have fibro from Sarcoidosis i also have mixed peripheral nerve disorders.

This is interesting BUT.

First fibromyalgia is not one disorder so this will not help everyone with fibro.

If this is the cause for my fibro How would it attack the body in less then 24 hours
I felt find one day and woke the next day feeling like i had been run over by a 18 wheeler.
the pain from that first day never got better for 4 years and the pain was so bad i would go for days without sleep
After 4 years i got a doctor to proscribe me Gabapentin by giving him a chose between Gabapentin or Vicodin

I have been on Gabapentin for 6 years now and have gone from 900 mg a day down to 300mg before bed.

I for years had problems with foot and leg pain when my legs and feet got cold.
This pain problem went away after i got fibro

I have seen resent research that shows 40 to 60 % of people with fibro have Small Fiber Neuropathy
menwithfibro.com...
www.va.gov...‎
www.medscape.com...

Thanx for posting this...greatly appreciated! FM is no picnic. I have Fibro and MS and both cause problems with sleep, terrible pain and more. The crappy thing about both dis-eases, the symptoms and painful problems don't always show or are evident so folks around you dismiss it. I just had an anvil dropped on me the other day at a thread of mine where I was called a hypochondriac or a druggie....I guess there are quite a few people that think it is a mental scenario or some such. I can assure folks that both diseases are no picnic.

I don't take anything for either. They tried peddling the anti-depressant route on me but I didn't like that and that ended that.. I won't even take tylenol as fibro can irratate the liver. Alllergic to aspirin and anti-inflammatories. So I take nothing, try and eat right/vit/min/herbs/water...that's it.

Folks that think it is from improper diet or a new disease....not so sure about that! It all started for me years ago when I was a vegetarian, (GMO) hadn't started that much back then yet. I took all kinds of sensible vitamins/minerals/herbs. Excercised plenty daily. Didn't do drugs or smoke...yet, got sick. Was thin also....no junk food. I'll never know what started it all....the nearby fracking chemicals? Du I was exposed too? Guess I'll never know. I hate it when I read that it is somehow the patients fault...that can't necessarily or always be the case.

The other prob...no matter what info or research study or medical article or website that is presented, so many folks say they aren't reliable or some such. Those diseases are big money makers tho so perhaps not enuf info will ever be presented anywhere...yet, I think folks should give such info like what you and others have found a chance.

It is all very painful, causes a myriad of problems and is not "make believe". I post here all hours of the day and nite as sleep is rare yet fatigue is crippling. It really, really hurts. Hypochondriac labels hurt too.

It is difficult when there is no one thing that seems to help. I don't take any of the prescription type drugs they push. I had a family member that had drug probs and we helped get that turned around but I would not want to chance the same path. That was 13 yrs. ago and the person is clean. I've seen too much relevant to what such behavior does. I have a daughter that has many health probs and I worry about what her doc does/prescribes. It can be an easy trap to fall into, even for so called legit health reasons. I won't do it. The pain does bring fun and quality of life way down.

Fibromyalgia sounds a little bit like Morgellons. Although most doctors still believe Morgellons is all in the patients head. But if you actually research Morgellons a little bit you will see there is a lot of information relating to Morgellons on the internet. There are many videos on YouTube where different people clearly show the same fluorescent worm-like creatures crawling out of their skin.

The only ones who said it was in people's heads,were the western medical community . That's because they couldn't find a cause ,so then it doesn't exist. Sort of ignore it and tell people they're nuts,because we are too inept to explain it .

It's interesting how their alleged science ,only applies to them,when it suits them .

My partner has FM and some days she cannot even get out of bed. I believe a lot of it has to do with nutrition and that our bodies are telling us we are severely deficient in vitamins and minerals because most of our food today is really filler and not packed with nutrients as it once was.

I started on Visalus about six months ago, and she did as well. She has had far fewer outbreaks and almost none when she does one shake a day. I am about to order some colloidal vitamins and minerals to stock up on because I have a sneaking feeling it's going to get harder to get them in the future. As a further testimony regarding nutrition, I have friends with type 2 diabetes whose doctors said they didn't know how, but their diabetes is GONE, and yes, they too started taking visalus. I know there are lots of nutrition supplements on the market. Find one to try for a few months and see if it helps. It's a hell of a lot cheaper than losing your happiness, career, and life to pain and suffering.

Originally posted by Ghost375
reply to post by westcoast

 

Imagine if that were you, and instead of sympathy and support, you get labeled as crazy and your pain dismissed. This has the potential of restoring the lives of millions!!!

um, I don't think anyone was calling them crazy. They were probably calling it psychosomatic, which means the pain originates from the brain, and they just don't really know the cause.

What you said is a gross simplification.

I think if you were to take a survey of those who have been diagnosed with FM and ask if they have ever been made to feel this way, you would get an idea about what I was referring to.

An educated person up until now would have possibly said psychosomatic, but the general public? Tell them you have FM and they automatically label you. Unfortunate, but true.

Originally posted by ANNED
I have fibro from Sarcoidosis i also have mixed peripheral nerve disorders.

This is interesting BUT.

First fibromyalgia is not one disorder so this will not help everyone with fibro.

If this is the cause for my fibro How would it attack the body in less then 24 hours
I felt find one day and woke the next day feeling like i had been run over by a 18 wheeler.
the pain from that first day never got better for 4 years and the pain was so bad i would go for days without sleep
After 4 years i got a doctor to proscribe me Gabapentin by giving him a chose between Gabapentin or Vicodin

I have been on Gabapentin for 6 years now and have gone from 900 mg a day down to 300mg before bed.

I for years had problems with foot and leg pain when my legs and feet got cold.
This pain problem went away after i got fibro

I have seen resent research that shows 40 to 60 % of people with fibro have Small Fiber Neuropathy
menwithfibro.com...
www.va.gov...‎
www.medscape.com...

I have been thinking about the same thing. Some of the most common symptoms and associated disorders...how it all starts...what systems are affected...how these extra nerves would tie in.

Here is what I am speculating:

First, these extra nerves would be there since birth, possibly a genetic thing. Whatever it is that 'triggers' them, hormones have an affect on it. For this reason, the first signs are seen shortly after puberty, which is why it is SO common for women with FM to also have Reynauds syndrome. This shows up typically around 14 yrs of age. It is triggered by either cold or emotions, is worse around the time you are on your period and/or sick.

FM is suspected to be triggered by a virus. What does a virus do? Tax your adrenal system...especially a hard, long-lasting one such as Epstein BARR or CSV (those suspected in both FM and MS)

SO...what IF, you are born with these extra nerves. It starts showing up in some ways after puberty but can suddenly be worsened and 'triggered' by a long viral illness and/or stress that causes you to have fatigued adrenals. You are now in cycle. Low cortisol = inflammation = over-reaction of these nerve bundles = build up of lactic acid = muscle pain, etc.

This leads to me to think that perhaps if we follow the bread crumbs back to the beginning, THAT is where we need to focus. We can't undo the nerves, but we can look at the triggers and the results. I think there needs to be focus on the adrenal system and the associated hormones, especially those associated with response to stress (such as cortisol) and how THAT may have an affect on how these nerves respond and behave.

Just my 2 cents.

Originally posted by PtolemyII
The only ones who said it was in people's heads,were the western medical community . That's because they couldn't find a cause ,so then it doesn't exist. Sort of ignore it and tell people they're nuts,because we are too inept to explain it .

BINGO. It's amazing how many times I've seen this happen in the past. It's why I'm always highly skeptical of what any western establishment says these days. They often have no motivation to tell the truth or admit their own lies.

Fibromyalgia is a combination of many things, affecting peoples quality of like, we all know somebody that is suffering from this disease in one way or the other because is becoming and epidemic, it was not taken seriously because it attacks women more than men, in the beginning women of pre menopausal years were the ones with most of the complains, now is wide spread, into the male and younger population.

Also, I have read a link of taking antibiotics and fibromyalgia specially if you take antibiotics more than once a year.

Sometimes diet and detox may work for some, but for others is hard to find out what is causing all the problems as it comes in clusters.

I have a friend that she have fibromyalgia for years and medications no longer work well for her as her body has gotten used to them.

Originally posted by westcoast
Well, now all those 'professionals' who dismissed their suffering patients as crazy and threw psychiatric drugs at them can eat dirt.

man .. i hear ya ....

I've been a victim of that by the 'professionals'. They all told me I was imagining things and gave me anti-depressants. (I didn't take them). But I knew I was sick and kept searching and searching. Finally got diagnosed with autoimmune and got the right meds (plaquinel) to make life bearable.

I hate doctors. I really really do.
The majority of them are arrogant, don't listen, and are just winging it ...

reply to post by Spader

I'm going to the Rheumy today for LUPUS testing. My symptoms have kicked up to the point that the Pulmonologist thinks that I might have Lupus as well as the Sjogrens that I'm already diagnosed with. The drugs you are on are much more powerful than what I'm on. The potential side effects of those are scary.

I swear that when I was younger we didn't hear about Lupus or Sjogrens of Fibro or the rest of them nearly as much as we do today. I don't know if it's better information getting out ... or if there is more of it. I'm thinking both. It wouldn't surprise me if we were poisoning ourselves with the vaccinations or the pollutions or all the electronic fields we've put in the air ....

Originally posted by LeLeu
reply to post by orangutang

 

Here is a link to an abstract from a study from PubMed.gov.
www.ncbi.nlm.nih.gov...
to much medical lingo for me but you may understand it all

edit on 23-6-2013 by LeLeu because: (no reason given)

it certainly is a mouthful! thanx for that.

there may be anatomical differences that predispose someone to fm. it would be good to know a complete picture of the subjects re work history, accidents, stress factors and such like. eg;stress and tension physically collect in the neck muscles and would diminish the life force available down the brachial plexus.

reply to post by FlyersFan


Do be carefull with Plaquenil, it can have some very nasty side effects including blindness and permenant nerve damage (peripheral neuropathy). Good luck with your Lupus test I hope you aren't positive for Anti ds-DNA.

Originally posted by PtolemyII
The only ones who said it was in people's heads,were the western medical community . That's because they couldn't find a cause ,so then it doesn't exist. Sort of ignore it and tell people they're nuts,because we are too inept to explain it .

It's interesting how their alleged science ,only applies to them,when it suits them .

A UK psychiatrist Professor Simon Wessely working on behalf of the insurance industry is the one who started the "its all in your head " part
his fake research on behalf of the insurance industry saved them billions of dollars
www.cfs-ireland.com...
forums.prohealth.com.../countess-of-mar-exposes-simon-wessely.94611/
menwithfibro.com...
blacktrianglecampaign.org... omprehending-hysterical-or-malingering/

reply to post by orangutang


Yep, I think your right. There are alot of different factors for FM even something such as Endometriosis can cause forms of Myalgia and about 10% of women have that one.

Originally posted by LeLeu
Do be carefull with Plaquenil, it can have some very nasty side effects including blindness and permenant nerve damage (peripheral neuropathy).

My neuropathy does worse when I'm not taking the full 400 mg Plaquenil dose.
I have peripheral neuropathy as well as autonomic. Also - the face and tongue.
If I cut my Plaquenil dose at all, it gets much worse. Strange eh? Autoimmune ... weird stuff.

As for blindness ... I have had 'visual snow' my whole life as well as eye pressure (glaucoma suspect)
problems. I can't take any of the meds for it because they give me severe cardiac issues. So I'm
expecting at some point to loose my sight. So far though, no plaquenil build up in the eyes ...

The plaquenil does give very strange dreams. It messes with the head ....
at least, it messes with mine. But I guess that's better than being stuck in bed all day
cursing the day I was born because of the pain and neuropathy issues ....

Anyways .. thanks for the good wishes. I hope I won't be adding LUPUS to my growing
list of issues ...

reply to post by FlyersFan


Holy cow, that's quite a collection you have going there ya poor bugger.
I hope you get some kind of relief soon.
My wife was misdiagnosed with Systemic Lupus and was treated with 400ml of Plaquenil, she now has Hydroxychloroquine neuromyotoxicity. Medical specialist, pigs arse.

Originally posted by LeLeu
Hydroxychloroquine neuromyotoxicity.

Big medical words .... I had to go look that up. YIKES. Looks scary. I wonder if that explains the difficulty breathing and A-Trib heart issues I've been having. Or maybe it's Lupus. Or maybe .... crap. It could be anything.

My best to you and your family. Gotta go fight with the rheumatologist now.
Later .. out.

ETA -

Originally posted by LeLeu
My wife was misdiagnosed with ....

I hear that a lot ... I was misdiagnosed .. lots of my friends have been misdiagnosed.
We all got put on high power drugs with awful side effects that we shouldn't have been on.
Thats why I don't trust ... and don't like ... doctors.