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Old 01-06-2008, 12:05 PM   #1
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Lupus & Fibromyalgia

I have been recently diagnosed with SLE; Lupus & Fibromyalgia I was wondering what natural remedies there are instead of taking prednisone?
Thanks for your time.
Debbie

 
Old 01-07-2008, 09:05 AM   #2
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Re: Lupus & Fibromyalgia

hi debbie,
i will have to look thru my herbal books and get back to you. in the fibro fog today. i also do not take steroids. won't either. they mess with my gentle ways.
you remind me if i get lost that i said i would do this for you. funny how the sun is out and i am in foggy fibro world. bizarre.
peace,
bluelakelady
ps. oh, duh! welcome to the boards. glad you found us.

 
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Old 01-07-2008, 08:42 PM   #3
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Re: Lupus & Fibromyalgia

If you're interested in going the natural med route, make absolutely certain that your PCP knows about EVERY SINGLE THING that you are taking. Some herbal meds, when mixed with Rx meds, can kill you.

 
Old 01-08-2008, 06:34 AM   #4
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Re: Lupus & Fibromyalgia

hi debbie,
still searching. so far i am not coming up with enough to sound intelligent. what symptoms are bothering you the most? this will help me skinny my search down a bit. wish i had more books. giggle. where would i put them????
peace,
blue

 
Old 01-11-2008, 07:23 PM   #5
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Re: Lupus & Fibromyalgia

Thanks for all your info. The symptoms that bother me the most are the bad H/A's in the back of my head and I also get really lightheaded and dizzy when active for more than 3-4 hours. The joint pain comes and goes; of course; good days and bad. Have you heard of Aspartame poisoning? I was just sent an e-mail on it. I drink and eat sugar free everything. From my creamer in the morning to my hot cocoa at night. I drink crystal light (sugar free) drinks all day long. I was wonderiing if my symptoms can be from the aspartame. My Dr. have not been sure why I have been getting lightheaded, dizzy, confused, memory problems. I have had 2 MRI's, both came back normal. Still having all these symptoms. Here is the article that she sent to me. Sorry it is so long.
> > >
> > >A MUST READ
> > >In October of 2001,a girl started getting very sick. She had stomach
> > >spasms and she was having a hard time getting around. Walking was a
> majorchore. It took everything she had just to get out of bed; she was in so much pain
> > >By March 2002, she had undergone several tissue and muscle biopsies and was on 24 various prescription medications. The doctors could not determine what was wrong with her. She was in so much pain, and so sick.she just knew she was dying. She put her house, bank accounts, life insurance, etc., in her oldest daughter's name, and made sure that her younger children were to be taken care of.
She also wanted her last hooray, so she planned a trip to Florida
(basically in a wheelchair) for March 22nd
> > >On March 19 I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.
> > >I recalled an article a friend of mine e-mailed to me and I asked her
> > >if she drank diet soda? She told me that she did. As a matter of fact,
> > >she was getting ready to crack one open that moment.
> > >I told her not to open it, and to stop drinking the diet soda!
> > >I e-mailed her the article my friend, a lawyer, had sent.
> > >She called me within 32 hours after our phone conversation and told me
> > >she had stopped drinking the diet soda AND she could walk! The muscle
> > >spasms went away. She said she didn't feel 100% but she sure felt a lot
> > >better. She told me she was going to her doctor with this article and
> would call me when she got home.
>
> > >Well, she called me, and said her doctor was amazed! He is going to call
all of his MS patients to find out if they consumed artificial sweeteners.
>In a nutshell, she was being poisoned by the Aspartame in the diet
> > >soda...and literally dying a slow and miserable death.

> > >When she got to Florida March 22, all she had to take was one pill, and
> > >that was a pill for the Aspartame poisoning! She is well on her way to a
> > >complete recovery.
> > >And she is walking! No wheelchair! This article saved her life.
> > >If it says 'SUGAR FREE' on the label; DO NOT EVEN THINK ABOUT IT!
> > >I have spent several days lecturing at the WORLD ENVIRONMENTAL
> CONFERENCE on
> > >"ASPARTAME," marketed as 'NutraSweet,' 'Equal,' and 'Spoonful.'
> > >In the keynote address by the EPA, it was announced that in the United
> > >States in 2001 there is an epidemic of multiple sclerosis and systemic
> > >lupus. It was difficult to determine exactly what toxin was causing this
> tobe rampant.
> > >I stood up and said that I was there to lecture on exactly that subject.
> > >I will explain why Aspartame is so dangerous: When the temperature of
> this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and
> > >systemic lupus. Many people were being diagnosed in error. Although
> > >multiple sclerosis is not a death sentence, Methanol toxicity is!
> > >Systemic lupus has become almost as rampant as multiple sclerosis,
> > >especially with Diet Coke and Diet Pepsi drinkers. The victim usually
> doesnot know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a
> life-threateningcondition.
> > >We have seen patients with systemic lupus become asymptotic, once takenoffdiet sodas.
> > >In cases of those diagnosed with Multiple Sclerosis, most of the
> symptoms disappear. We've seen many cases where vision loss returned and hearing loss improved markedly.
> > >This also applies to cases of tinnitus and fibromyalgia.
> > >During a lecture, I said, "If you are using ASPARTAME (NutraSweet,
> Equal,Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms,
> shooting,pains, numbness in your legs, cramps, vertigo, dizziness, headaches,
> > >tinnitus, joint pain, unexplainable depression, anxiety attacks, slurred
> > >speech, blurred vision, or memory loss you probably have ASPARTAME
> > >poisoning!"
> > >People were jumping up during the lecture saying, "I have some of these
> > >symptoms. Is it reversible?"
> > >Yes! Yes! Yes! STOP drinking diet sodas and be alert for Aspartame on
> food labels! Many products are fortified with it! This is a serious problem.
> > >Dr. Espart (one of my speakers) remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice, a nurse
> stated that six of her friends, who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!
> > >Diet soda is NOT a diet product! It is a chemically altered, multiple
> > >SODIUM(salt) and ASPARTAME containing product that actually makes you crave carbohydrates. It is far more likely to make you GAIN weight!
> > >These products also contain formaldehyde, which stores in the fat cells,
> > >particularly in the hips and thighs. Formaldehyde is an absolute toxin
> > >andis used primarily to preserve "tissue specimens." Many products we
> use
> > >every day contain this chemical but we SHOULD NOT store it IN our bo
> > >Dr. H. J. Roberts stated in his lectures that once free of the "diet
> > >products" and with no significant increase in exercise; his patients
> lost an average of 19 pounds over a trial period.

> > >Aspartame is especially dangerous for diabetics.
> > >We found that some physicians, who believed that they had a patient with
> > >retinopathy, in fact, had symptoms caused by Aspartame.
> > >The Aspartame drives the bloodsugar out of control. Thus diabetics may
> > >suffer acute memory loss due to the fact that aspartic acid and
> > >phenylalanine are NEUROTOXIC when taken without the other amino acids necessary for a good balance.
> > >Treating diabetes is all about BALANCE. Especially with diabetics, the
> > >Aspartame passes the blood/brain barrierand it then deteriorates the
> > >neurons
> > >of the brain; causing various levels of brain damage, seizures,
> depression,
> > >manic depression, panic attacks, uncontrollable anger and rage.

> > >Consumption of Aspartame causes these same symptoms in non-diabetics as
> > >well.
> > >Documentation and observation also reveal that thousands of children
> > >diagnosed with ADD and ADHD have had complete turnarounds in their
> behavior
> > >when these chemicals have been removed from their diet. So called
> > >"behavior
> > >modification prescription drugs" (Ritalin and others) are no longer
> > >needed.
> > >Truth be told, they were never NEEDED in the first place! Most of these
> > >children were being "poisoned" on a daily basis with the very foods that
> > >were "better for them than sugar."
> > >It is also suspected that the Aspartame in thousands of pallets of diet
> > >Coke
> > >and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.
> > >Dr. Roberts warns that it can cause birth defects, i.e. mental
> retardation,
> > >if taken at the time of conception and during early pregnancy.
> > >Children are especially at risk for neurological disorders and should
> NEVER
> > >be given artificial sweeteners. There are many different case histories
> to relate of children suffering grand mal seizures and other neurological
> > >disturbances talking about a plague of neurological diseases directly
> > >caused
> > >by the use of this deadly poison."
> > >Herein lies the problem:
> > >There were Congressional Hearings when Aspartame was included 100
> different products and strong objection was made concerning its use. Since this initial hearing, there have been two subsequent hearings, and still
> nothing has been done. The drug and chemical lobbies have very deep pockets.
> > >Sadly, MONSANTO'S patent on Aspartame has EXPIRED!
> > >There are now over 5,000 products on the market that contain this deadly
> > >chemical and there will be thousands more introduced. Everybody wants a "piece of the Aspartame pie." I assure you that MONSANTO, the creator of
> > >Aspartame, knows how deadly it is.
> > >And isn't it ironic that MONSANTO funds, among others, the American
> > >Diabetes
> > >Association, the American Dietetic Association and the Conference of the American College of Physicians?
This has been recently exposed in the New York Times.
> > >These [organizations] cannot criticize any additives or convey their
> link to MONSANTO because they take money from the food industry and are
> required to endorse their products.
> > >Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding
> > >pregnant women, children and infants. The bill would also institute
> > >independent studies on the known dangers and the problems existing in
> the general population regarding seizures, changes in brain chemistry,
> > >neurological changes and behavioral symptoms.
> > >The bill was killed.
> > >It is known that the powerful drug and chemical lobbies are responsible
> for this, letting loose the hounds of disease and death on an unsuspecting
> and uninformed public. Well, you're Informed now! YOU HAVE A RIGHT TO KNOW!
> > >Please print this out and/or e-mail to your family and friends.
> > >They have a right to know too
Let me know what you think.
Thanks for your time.
Debbie

 
Old 01-12-2008, 08:02 AM   #6
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Re: Lupus & Fibromyalgia

hi debbie,
i would strongly suggest you consider giving up sugar alternates. i use organic raw sugar and buy all organic hot cocoa. for years now there has been more and more proof that alternates to sugar are not healthy. just like margarine was the big thing, till studies were done, and gee, real butter is better for our health. real and raw foods are better for us than fabricated alternates.
i have never been able to use alternate sugar. just something in me that says yuck, no.
do some of your own research and decide for yourself. this is your body and only you decide what will go in it.
i used to love those creamers with flavors. then i read what was in it. went back to organic milk in my coffee.
i will go back to my books. valerian root is helpful with headaches as is kava kava and chamomile. try sleepy time tea for pain. i always ask the nice people in the suppliment dept of my organic store to help me. they have books and everything to help me help myself.
sorry kiddo. i had another wee stroke and typing is monster therapy. thinking and sounding smart, giggle, a chore. must go.
peace,
blue

 
Old 01-12-2008, 10:07 AM   #7
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Re: Lupus & Fibromyalgia

Thanks for your reply. I apprerciate you taking the time to help me. What is your condition? Sorry to hear about the stroke.
I am going to take a ride to our local Trader Joe's and Health food store. I will begin a cleanse and start eating more organic. Thanks Again for your time. Today my boyfriend is treating us to a 1 hour massage(in our home) That should help break down all the toxins in my body and; of course; feel REAL good.
Take Care,
Debbie

 
Old 01-12-2008, 07:55 PM   #8
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Re: Lupus & Fibromyalgia

Aspartame is poisonous when consumed in large amounts. Poisonous to the extent described in the article? Only if she was consuming massive amounts on a daily basis. And frankly, anyone who drinks that much Coke is asking for health trouble.

If you have to go with a sugar alternative, go with Splenda. It's made from real sugar, so it doesn't have the associated health concerns that other artificial sweeteners do. My mom is diabetic and I've started using the Splenda Baking Blend in most of my baking and none of us can tell any difference in taste.

 
Old 01-12-2008, 09:27 PM   #9
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Re: Lupus & Fibromyalgia

This post was very timely for me. I was diagnosed with lupus in May and was recently diagnosed with having fibromyalgia also. I am also wanting to go the alternative route. I will be making an appt with a Naturopathic Dr. soon and will report back on my experience . I'm leaning toward acupuncture also. Right now I'm taking plaquenil which has helped me a lot ,and Tylenol Arthritis. Also kava kava ,and Valerien at night. Plus a calcium/mag.supplement and Vit D by prescription. I really don't want to go on antidepressants, or pain meds or prednisone. Although there may come a time when it will come to that.
good luck , Kat

 
Old 01-17-2008, 06:28 AM   #10
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Re: Lupus & Fibromyalgia

I drink sf creamer in the a.m w/ 1/2 packet of splenda, all day long I drink sf drinks (in my bottled water) at night I have either sf hot cocoa, sf popsicles or sf fudgsickles. I am experiencing alot of the symptons in the article "sweet poison". Although recently diagnosed with Lupus & Fibromyalgia; my DR's don't know why I am having the real bad H/A's, confusion, vertigo, lightheadedness, dizziness and trouble remembering. I have had 2 MRI's & both are normal. Any suggestions???

 
Old 01-17-2008, 06:45 AM   #11
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Re: Lupus & Fibromyalgia

hi 13,
when i get up to it i still wont list all the stuff in me. so, fibro, strokes (6), r.a., o.a. lupus, rls, gerd, costo, yikes, enough for now. i have it all written on a paper.
this last episode of 2 strokes in less than a month hit both sides and affected my speech. yea, i sound drunk. giggle. am focusing on pronunciation and complete sentences. giggle. i still feel 3 and that old mirror still says 52. i laugh alot at myself. i like to laugh.
i am glad you are going shopping. good girl!! wish i had a trader joes by me. alas i live in the country where i love it and must give up stores like that. nearest one is 2 hours away. bon appetite!
peace,
blue

 
Old 01-17-2008, 06:49 AM   #12
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Re: Lupus & Fibromyalgia

oh yea,the headaches and dizzyness and all i have had pretty much from the start of fibro. even forgot what money means and how to read. it came back. sure is weird isn't it? it sounds like fibro fog to me. read up on that if you haven't already.
bye,
blue

 
Old 01-18-2008, 10:52 AM   #13
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Re: Lupus & Fibromyalgia

Switch to Splenda SF stuff as much as you can. If the brand uses Splenda, it says so right on the front. Blue Bunny has a whole line of frozen stuff that uses Splenda, and the Dasani and Aquafina flavored water also uses Splenda.

Quote:
my DR's don't know why I am having the real bad H/A's, confusion, vertigo, lightheadedness, dizziness and trouble remembering.
That's all classic FM symptoms. I keep a headache nearly all the time and nothing helps it so I've learned to just ignore it and to back off when it gets bad. Lightheadedness and dizziness, got that too. And trouble remembering things. At 25, I'm way too young to be having "senior moments", lol. I used to be the person in the family that you could tell me anything and I'd remember it. I used to have an almost photographic memory. Now I have trouble sometimes remembering to brush my teeth or the fastest way to get from one area in town to another area. Or where I left my water glass or my favorite pair of boots.

Definitely read up on fibro fog. That's the one thing that we all will always have in common. Some days it just hurts to think.

Last edited by Grapedy; 01-18-2008 at 10:53 AM.

 
Old 01-20-2008, 07:50 PM   #14
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Re: Lupus & Fibromyalgia

I wish there were a more natural alternative to prednisone, I would certainly use it. I have tried to get off the prednisone but cannot. It works better for me than the alternatives. I guess my body is just wired differently than others. I don't gain weight or have the mood problems etc.. I'm not saying it is perfect but better than the rest for me.

I also use splenda for sugar free and use the blue bunny splenda things. I have found that just staying away from as much sugar as is possible and not even using splenda is working best for me right now. However my choice is splenda when I need to make the choice.

Glojer

 
Old 01-25-2008, 05:36 AM   #15
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Re: Lupus & Fibromyalgia

Quote:
Originally Posted by Grapedy View Post
Switch to Splenda SF stuff as much as you can. If the brand uses Splenda, it says so right on the front. Blue Bunny has a whole line of frozen stuff that uses Splenda, and the Dasani and Aquafina flavored water also uses Splenda.



That's all classic FM symptoms. I keep a headache nearly all the time and nothing helps it so I've learned to just ignore it and to back off when it gets bad. Lightheadedness and dizziness, got that too. And trouble remembering things. At 25, I'm way too young to be having "senior moments", lol. I used to be the person in the family that you could tell me anything and I'd remember it. I used to have an almost photographic memory. Now I have trouble sometimes remembering to brush my teeth or the fastest way to get from one area in town to another area. Or where I left my water glass or my favorite pair of boots.

Definitely read up on fibro fog. That's the one thing that we all will always have in common. Some days it just hurts to think.
Have you had an MRI, Brain, neck and spine? For black spots or white lessions. Start here.

 
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