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Fibromyalgia Advise

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Fibromyalgia Advise

Old 11-14-11, 12:40 PM
  #51  
UpHill101
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Originally Posted by icyclist View Post
"My reply manner was the same as has his rude manner"

Don't do that!
I didnt want to... I dont like that stuff but I wont ignore it either...

Also thanks for your earlier post.
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Old 11-14-11, 01:07 PM
  #52  
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gluten is hiding everywhere. If you're going to go gluten free, you need to be vigilant and read all ingerdients. Wheat, rye, barley and oats. Frozen turkey uses wheat in the pre-baste formula. who'd put wheat in a turkey?
Anyway, if you're going to do it, you need to make a complete committment, otherwise forget it. Small amounts of gluten can do serious damage if you're sensitive.
My strategy is if the ingredients list is too long or i get bored reading it, I just don't buy the product.
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Old 11-14-11, 04:05 PM
  #53  
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Hey there all, has anyone used Quinine for leg cramps/pain, the FDA banned it for leg pain but I personally do not really trust the FDA. I think thier best interest are in revenue.
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Old 11-14-11, 04:22 PM
  #54  
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Originally Posted by UpHill101 View Post
Hey there all, has anyone used Quinine for leg cramps/pain, the FDA banned it for leg pain but I personally do not really trust the FDA. I think thier best interest are in revenue.
How does the FDA get revenue from not approving Quinine? You'd trust strangers on the internet over the FDA?
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Old 11-14-11, 04:38 PM
  #55  
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Originally Posted by UpHill101 View Post
Hey there all, has anyone used Quinine for leg cramps/pain, the FDA banned it for leg pain but I personally do not really trust the FDA. I think thier best interest are in revenue.
I think this is a good trade off for the proven placebo effect from quinine for leg cramping.

"Quinine has not been shown to be effective for this purpose, and may cause serious or life-threatening side effects, including severe bleeding problems, kidney damage, irregular heartbeat, and severe allergic reactions. "

Last edited by RUOkie; 11-14-11 at 04:42 PM.
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Old 11-14-11, 04:39 PM
  #56  
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Originally Posted by UpHill101 View Post
Hey there all, has anyone used Quinine for leg cramps/pain, the FDA banned it for leg pain but I personally do not really trust the FDA. I think thier best interest are in revenue.
I'll weigh in.

Basically, FM is a condition you manage, not cure. There is no fix. That means that there is no drug, no diet, or any particular exercise that is going to make it go away. Effective management of FM has the goal of maximizing functional ability, and minimizing suffering and impairment. Sounds like your goal is to be able stay very active, and ride your bike alot. It's do-able, but will take alot more of your time and energy to find the best way how.

People who are successful at this do most of the things mentioned so far in this thread. The combination of those strategies, used consistently, is what seems to work the best. While each of the following has a whole lot to it, this is the "short list":

- good quality sleep, and enough of it
- exercise, with an emphasis on flexibility and endurance, (vs. strengthening)
- pacing of activity, balancing work/effort, rest, and play
- stress management, including effective relaxation practice, other cognitive, behavioral and interpersonal skills
- support and communication skills (family, friends, co-workers, health-care providers included)
- medication, as an adjunct to other treatment
- attitude matters, especially when it includes productively taking responsibility for your own health


This last one can mean HTFU, but not if it means ignoring what your body is telling you, or if you ignore all the other things I listed. FM is not going to go away if you just push harder, that only makes it worse. Anybody who thinks that "you just have to push through the pain" is deluded.

Good luck!
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Old 11-14-11, 05:21 PM
  #57  
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Originally Posted by gregf83 View Post
How does the FDA get revenue from not approving Quinine? You'd trust strangers on the internet over the FDA?
I just dont trust fromer CEO's of food companies now part ahead of the FDA, Food Inc documentary is pretty interesting and touches on this subject briefly...good watch if you ever have free time.
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Old 11-14-11, 05:23 PM
  #58  
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Originally Posted by RUOkie View Post
I think this is a good trade off for the proven placebo effect from quinine for leg cramping.

"Quinine has not been shown to be effective for this purpose, and may cause serious or life-threatening side effects, including severe bleeding problems, kidney damage, irregular heartbeat, and severe allergic reactions. "

there are some studies that prove that Quinine is effected in suppress cramp pain... never would hurt to try I suppose....
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Old 11-14-11, 05:25 PM
  #59  
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Originally Posted by DScott View Post
I'll weigh in.

Basically, FM is a condition you manage, not cure. There is no fix. That means that there is no drug, no diet, or any particular exercise that is going to make it go away. Effective management of FM has the goal of maximizing functional ability, and minimizing suffering and impairment. Sounds like your goal is to be able stay very active, and ride your bike alot. It's do-able, but will take alot more of your time and energy to find the best way how.

People who are successful at this do most of the things mentioned so far in this thread. The combination of those strategies, used consistently, is what seems to work the best. While each of the following has a whole lot to it, this is the "short list":

- good quality sleep, and enough of it
- exercise, with an emphasis on flexibility and endurance, (vs. strengthening)
- pacing of activity, balancing work/effort, rest, and play
- stress management, including effective relaxation practice, other cognitive, behavioral and interpersonal skills
- support and communication skills (family, friends, co-workers, health-care providers included)
- medication, as an adjunct to other treatment
- attitude matters, especially when it includes productively taking responsibility for your own health


This last one can mean HTFU, but not if it means ignoring what your body is telling you, or if you ignore all the other things I listed. FM is not going to go away if you just push harder, that only makes it worse. Anybody who thinks that "you just have to push through the pain" is deluded.

Good luck!

yes I agree with you on these things...I know there is no special pill or cure but I know I can live healthy and completely supress this syndrome disease whatever it is....
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Old 11-14-11, 05:34 PM
  #60  
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Originally Posted by DScott View Post
I'll weigh in.

Basically, FM is a condition you manage, not cure. There is no fix. That means that there is no drug, no diet, or any particular exercise that is going to make it go away. Effective management of FM has the goal of maximizing functional ability, and minimizing suffering and impairment. Sounds like your goal is to be able stay very active, and ride your bike alot. It's do-able, but will take alot more of your time and energy to find the best way how.

People who are successful at this do most of the things mentioned so far in this thread. The combination of those strategies, used consistently, is what seems to work the best. While each of the following has a whole lot to it, this is the "short list":

- good quality sleep, and enough of it
- exercise, with an emphasis on flexibility and endurance, (vs. strengthening)
- pacing of activity, balancing work/effort, rest, and play
- stress management, including effective relaxation practice, other cognitive, behavioral and interpersonal skills
- support and communication skills (family, friends, co-workers, health-care providers included)
- medication, as an adjunct to other treatment
- attitude matters, especially when it includes productively taking responsibility for your own health


This last one can mean HTFU, but not if it means ignoring what your body is telling you, or if you ignore all the other things I listed. FM is not going to go away if you just push harder, that only makes it worse. Anybody who thinks that "you just have to push through the pain" is deluded.

Good luck!
Good summary, HTFU mindsets may just aggravate the condition. Listen to your body.
In regards to medications, the two I have seen the best results with have been Lyrica and Wellbutrin.
The other very important item is to find a Doctor who takes this disease seriously, too many have a disparaging attitude towards the disease and dismiss it as a disease of crazies.
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Old 11-14-11, 05:40 PM
  #61  
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Originally Posted by UpHill101 View Post
Ha I could **** you up on a bike with FM or not... very dumb statement.
I think I am seeing the makings of another Vicelord here.
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Old 11-14-11, 05:44 PM
  #62  
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Originally Posted by UpHill101 View Post
Your wife must be on her feet a lot as a nurse I bet, does here consistent sleep methods help her with pain during her active day?
When she was in the deepest throes of fm, sleep did help. Her symptoms have dropped off for the most part in the past several years, but when it was the worst a key did in fact seem to be regular, sufficient sleep.
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Old 11-14-11, 05:44 PM
  #63  
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Originally Posted by surgeonstone View Post
I think I am seeing the makings of another Vicelord here.
Watch yourself, the force is strong with this one....
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Old 11-14-11, 06:42 PM
  #64  
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Do any of these sound like thay might explain some of it?

septic arthritis (caused by bacteria and bacterial endotoxemia)
mold or something else that activates the complement system (in either indoor or outdoor air, indoors can persist in making people sick for decades if its not cleaned out)
chronic glutathione depletion from xenobiotics (n-acetylcysteine and/or Alpha-lipoic acid or other antioxidants like vitamins c, e , selenium, RESV, co q10, etc. might help that)
lead paint dust (chelation if really bad, only way to tell is XRF, blood wont tell you, NAC more gradual, talk to doctor)
mercury via additives to latex paint, or agricultural tilling, or coal fired power plants upwind
bisphenol a from drinking or eating acidic foods from plastic or being around heated plastics or flame ******ants in foam mattress or similar
formaldehyde in OSB (fake wood used in many building applications now) and fiberboard furniture.. They shed lots more formaldehyde, which is a carcinogen, if they have ever been saturated wih water, like in a flood, even if it was years before.. (delamination) See buildingscience.com

A thought.. resveratrol, which is really good for joints, might help..
also, if its stuff in indoor air, leaving two windows cracked open year round, or a heat recovery ventilator (so you could ventilate year round without losing lots of heat) might help.

Last edited by christ0ph; 11-14-11 at 06:51 PM.
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Old 11-14-11, 07:00 PM
  #65  
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Everyone 40 or so older who grew up in the US was exposed to lots of lead from gasoline combustion. that makes a huge, measurable generational differences in body lead burden based on age/generation. Also, your homes age (homes built after some point in the 1970s have much less lead because it became illegal to sell after that point, alhough latex paint still contained mercury for decades, until quite recently.. Because of the lead and asbesos dust from brake shoes and the carbon proximity to highway effects a lot of things.. It effects IQ (that also may be because constant noise of some kinds causes neural rewiring) diesel exhaust and wood smoke both contain microfine carbon black that goes right down to the blood brain interface and causes systemic inflammation as well. Black mold causes apoptosis of olfactory neurons and also neurons in the brain. Other kinds of mold toxins (ochratoxin a) from the aspergillus family may cause parkinsonism.
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Old 11-14-11, 07:04 PM
  #66  
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Guten problems and mold exposure seem to go hand in hand, according to Dr. R. Shoemaker, a physician from Pokemoke, Maryland who seems to be the doctor who has the most success with mold illness. He's worth checking out - he's on the web somewhere..
Originally Posted by tanguy frame View Post
gluten is hiding everywhere. If you're going to go gluten free, you need to be vigilant and read all ingerdients. Wheat, rye, barley and oats. Frozen turkey uses wheat in the pre-baste formula. who'd put wheat in a turkey?
Anyway, if you're going to do it, you need to make a complete committment, otherwise forget it. Small amounts of gluten can do serious damage if you're sensitive.
My strategy is if the ingredients list is too long or i get bored reading it, I just don't buy the product.
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Old 11-14-11, 07:12 PM
  #67  
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Here's what works for me for better sleep. 5-HTP (precursor of serotonin), OR (NOT and) l-Tryptophan. Vitamin B6.. (helps tryptophan turn into 5-HTP) Evening small sweet snack..(I use soymilk or yogurt) right before bedtime. a mini aspirin, niacin, taurine, Cool nightime temps.. (studies now show the brain sleeps better when its cool) Melatonin 3 mg.. (minimum) also, dont eat a heavy meal for at least two hours before bed.. and try to pee before going to bed. Also avoid chocolate...tea, and obviously, coffee..

Ventilation.. people need ventilation at night, ideally air exchange from outside..

Dont overdo the 5-HTP but you may want to add some earlier in the day too, if you're under a lot of stress.

I also take tyrosine or L-phenylalanine in the morning..


Originally Posted by UpHill101 View Post
I think I will try the skullcap to help me sleep because I heard its a good natural sleep aid
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Old 11-14-11, 07:18 PM
  #68  
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I think "fibromyalgia" is a so called "junk diagnosis" (a symptom mislabelled as an illness thats used to cut off help to people) I think lots of people who allegedly have it actually have something else, like an infectious disease, or something like a high burden of xenobioics.. Often, people have literally five or six of these issues at the same time..

Many diseases are treatable, they would need to do a differential diagnosis, which is time consuming, and may involve testing (now decried and discouraged as "defensive medicine") .. and treating it. People may have better luck saying they are uninsured and rich and self paying.

In network Doctors have secret "gag clauses" that limit what they can discuss with you if you have HMO insurance.. they have just an average of 6-8 minutes before the next patient.. They are under a lot of pressure to "manage" illness, which means treat symptoms. Figuring out chronic illness is something older doctors often do better.. People might want to consider a trip overseas to do investigatory bloodwork that they wouldn't get here in the US, because of he HMOs and their crap.

While its still possible.

Last edited by christ0ph; 11-14-11 at 07:25 PM.
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Old 11-14-11, 07:18 PM
  #69  
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a candida / fungi test by Dr. W. Crook M.D.
https://sites.google.com/site/dysbios...ndidayeasttest

In 2002, the Journal of the American Medical Association reported that wheat and other grains "commonly" contain mycotoxins. The American Cancer Society states that exposure to mycotoxins favors the occurence of the disease. Other foods that contain mycotoxins are corn, peanuts, hard cheeses, and alcohol.

https://sites.google.com/site/dysbios...mycotoxicfoods
people with MS see list at bottom

Fungi is better referenced as “Plague” in Leviticus 14:33-48

Fungi [yeast(candida), mold, mildew, fungus]...and their poisons, mycotoxins, causing disease is nothing new ... Leviticus 14:34, King James Bible calls it a leprosy, the New International Version (N.I.V.) Bible calls it a mildew (fungi), The New English Bible calls it a fungus infection, nothing new.

take any immune health issue, and Google(search engine) it with fungi OR yeast OR candida OR mycotoxins OR dysbiosis OR acidosis ex.
fibromyalgia/ candida... sinus infections/ yeast
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Old 11-14-11, 07:30 PM
  #70  
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Originally Posted by UpHill101 View Post
I have been a cyclist for three years. I used to put in around 500 miles a week. But then I started to get sick and then I was diagnose with fibromyalgia. I cant really cycle anymore liked I use to but Im looking foward not backwards.
What changed in your world? Did you move, change jobs, or was there any FLOODING in your world/home/community within the last 5-7 years?

Do you live in the Mississppi, St Lawrence, Ohio river valleys, or the Southwest, or Central Valley of CA?

Or do you live in an area where there are a lot of deer and ticks? New England or Mid Atlanic states, or Northern CA,

Or wild canids? (wolves, coyotes) or pigeons and/or other birds?
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Old 11-14-11, 07:38 PM
  #71  
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Originally Posted by toddbiker View Post
a candida / fungi test by Dr. W. Crook M.D.
https://sites.google.com/site/dysbios...ndidayeasttest

In 2002, the Journal of the American Medical Association reported that wheat and other grains "commonly" contain mycotoxins. The American Cancer Society states that exposure to mycotoxins favors the occurence of the disease. Other foods that contain mycotoxins are corn, peanuts, hard cheeses, and alcohol.

https://sites.google.com/site/dysbios...mycotoxicfoods
people with MS see list at bottom

Fungi is better referenced as “Plague” in Leviticus 14:33-48

Fungi [yeast(candida), mold, mildew, fungus]...and their poisons, mycotoxins, causing disease is nothing new ... Leviticus 14:34, King James Bible calls it a leprosy, the New International Version (N.I.V.) Bible calls it a mildew (fungi), The New English Bible calls it a fungus infection, nothing new.

take any immune health issue, and Google(search engine) it with fungi OR yeast OR candida OR mycotoxins OR dysbiosis OR acidosis ex.
fibromyalgia/ candida... sinus infections/ yeast
If I could mod this post up I would. This is true. You may want to ask your doctor if you can investigate cholestyramine (high cholesterol treatment) which sucks mold toxins and other low molecular weight toxins out of your enterohepatic recirculation. It turns out to help a great many people. But watch out for constipation. I would use it judiciously with a good laxative.

It may make your symptoms get worse for a short time at the beginning, but after a few days, if its working, you will feel better.

Many people have multiple interacting health issues. Mold exposure weakens people and they pick up other illnesses too dozens of potential pahogens can accumulate.. people get sicker and sicker. Its always been that way, to some extent, but the increase in extreme weather and all the xenobiotics - chemicals, we are exposed to is new..and is a very bad new thing..

They DON'T want to admit anything having to do with global warming.. so dont expect your doctor to acknowledge anything having to do with mold might be making you sick.. Even though its clear it does, the government now admits its dangerous, (as does the Bible- 4000 yrs old) Despite the disinfo campaign the science supporting a need to develop treatments systematically is accumulating ... fast..

hey use other mycotoxin binders routinely for animals because he feed they give them is the food that fails the tests for people food and can't be diluted enough to pass because no other grain is close at hand.. did you follow that?

Last edited by christ0ph; 11-14-11 at 07:46 PM.
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Old 11-14-11, 07:43 PM
  #72  
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I've changed my mind. It's unbalanced humours.

https://www.hulu.com/watch/3529/satur...odoric-of-york
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Old 11-14-11, 07:49 PM
  #73  
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Originally Posted by christ0ph View Post
Everyone 40 or so older who grew up in the US was exposed to lots of lead from gasoline combustion. that makes a huge, measurable generational differences in body lead burden based on age/generation. Also, your homes age (homes built after some point in the 1970s have much less lead because it became illegal to sell after that point, alhough latex paint still contained mercury for decades, until quite recently.. Because of the lead and asbesos dust from brake shoes and the carbon proximity to highway effects a lot of things.. It effects IQ (that also may be because constant noise of some kinds causes neural rewiring) diesel exhaust and wood smoke both contain microfine carbon black that goes right down to the blood brain interface and causes systemic inflammation as well. Black mold causes apoptosis of olfactory neurons and also neurons in the brain. Other kinds of mold toxins (ochratoxin a) from the aspergillus family may cause parkinsonism.
Was wondering if you or anyone out there has any luck with chelation ?
It was recommended to me, and I have definitely been exposed to toxins as a mechanic.In the old days I use to wash part in gasoline.
But not being covered by insurance I'm a little hesitant.Some claim cilantro is a natural way to remove heavy metals which I ate for mos.and still juice it,but I never have noticed any difference.
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Old 11-14-11, 08:00 PM
  #74  
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Originally Posted by UpHill101 View Post
Yeah I know it is a lot, but that summer (2 summers ago) I put in just over 6,000 miles. Doctors though I went to hard or rode to much so it must be a sports related injury. But then the other symptoms came and I was diagnose last summer. Now I only ride maybe 2 or 3 times a week, with about 20-25 mile trips. I have doing that for about a year on and off. Im done now with the bike until next spring.


Im on cymbalta but it really dosnt do much, if I dont do any excercise I have small flare ups here and there but when I rideit usually gets painfull if I do hills or what not..

Anyways right now Im trying a lot of different stuff to see what works...I will ride again like I use too..

Im college student I try to handle the stress best I can.
Dude, you are in college and some Quack already diagnosed you with Fibromyalgia??? Seriously, rethink this and don't just accept the label. Fibromyalgia is considered by many a phony disease without any consensus in the medical profession. It is often the diagnosis that physicians give when chronic complainers of pain and fatigue come in and they cannot find any underlying legitimate diagnosis. I work in the medical field and the typical Fibromyalgia patient that we see are middle aged obese females who are dependent on prescription pain meds. Sorry, but this is what we see all too often. Just don't accept the diagnosis just yet.
https://www.reporternews.com/news/200...-fibromyalgia/
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Old 11-14-11, 08:47 PM
  #75  
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Originally Posted by Focuspokus View Post
Dude, you are in college and some Quack already diagnosed you with Fibromyalgia???...Just don't accept the diagnosis just yet.
https://www.reporternews.com/news/200...-fibromyalgia/
Uphill101 did not say the diagnosis of fibro came from a dr., or if he's been prescribed any medication.
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