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Dolphinschild
Member
06-21-2006
| Monday, January 14, 2008 - 2:28 am
Dovez, I had the same problem, went to the sign in page. Can you please let us know what has you upset?
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Costacat
Member
07-15-2000
| Monday, January 14, 2008 - 6:42 am
The title of the article is "Drug Approved Is Disease Real?" The article talks about the FDA approval of Pfizer's Lyrica. And then adds: quote:But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.
Among other things. I won't copy the entire article here as it's a copyright violation. If you want to see the entire article, I'd recommend you register on the NY Times site. It's free, and you'll never get any emails from them.
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Costacat
Member
07-15-2000
| Monday, January 14, 2008 - 10:08 am
So after all that... I just got a call from the doc's office. My surgeon is out sick today, so my surgery is now scheduled for Friday. I'm trying to think of the positive... 1. Now my pre-op will be a couple days in advance, so if there's anything I didn't do, I'll know about it. (And can maybe fill scrips in advance.) 2. Surgery is now scheduled for noon, so that's two less hours I'll have to starve! 3. Now that the surgery is on Friday, that'll give me the weekend to recover. Which means that I may not have to lose much time off work, except for all day Friday. (Yeah, I'm still being optimistic that I can get back to work within a couple of days!) So now... I'm starving and I'm gonna go fix that second cup of coffee that I denied myself!! 
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Mameblanche
Member
08-24-2002
| Monday, January 14, 2008 - 11:33 am
Thx everyone for the hugs and kind words... Still feel like crap today tho. My upper body is feeling better, the muscle-relaxant and the massage mat did help. But my lower back on my right side, my right hip, and my right knee are still very stiff, sore, and I'm grumpy due to the unrelenting discomfort and pain. It sure does feel good to come in here and have a place to vent a bit. And it's very helpful to see people coping and having good days, to remind me this too shall pass. (Hopefully before 2009. LOL) Costa, I posted in your folder...
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Dolphinschild
Member
06-21-2006
| Monday, January 14, 2008 - 12:32 pm
Ms. Mame! I hope you feel better soon! Keep taking care of yourself and taking it one MOMENT at a time. Remember be as kind and loving to yourself as you would one of us. Thinking of you! HUGS... xoxoxoxoxo
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Karuuna
Board Administrator
08-31-2000
| Monday, January 14, 2008 - 12:52 pm
Mame, I'm glad you are feeling a little better. It's so hard, isn't it? To want to get up and live life and have fun and do stuff, and you just can't. I got my energy revitalization formula today. It's a powdered mix with lots and lots of enzyme supplements, and a separate capsule with B-vitamins. I'm a little nervous about the B-complex stuff, since I have had problems with them causing insomnia before. So I'm trying to decide how to proceed.
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Dolphinschild
Member
06-21-2006
| Monday, January 14, 2008 - 1:07 pm
I think that cold I had is gone. Yesterday all of a sudden my nose cleared up and I was able to breathe and I was able to lay down normally and sleep too without breathing complications. Today I feel completely normal in my sinus' too. I started the suppliments my Chiro put me on. Today is the 3rd day I have been on them. I notice that the spot between my shoulder blades that always feel like someone is putting pressure there and irritating it. The pressure feeling is completely gone. I have no irritation and no pressure feeling there. I hope that is a good sign that the suppliments are working. I don't know if it is because I have been sick with the cold and I am feeling better today, but I also feel energy. Not the kind to take on the world, but I don't feel fatigured or like I HAVE to take a nap. I feel actually awake and alert too. I hope this is all a good sign. Thank you my new FFF's. I am sorry we are all here, but I am glad I have a place to go for support. Hugs...
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Dovez
Member
08-27-2005
| Monday, January 14, 2008 - 7:20 pm
hi all, i'm glad that some of your supplements, etc. are working. now...did anyone note my posting a few days ago re: lack of adrenals in body? i can't seem to find the posting so think it got lost in cyber limbo. i just need to know if any of you with "our symptoms" has ever been found to have a lack of natural adrenals/cortisone.
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Pamy
Member
01-02-2002
| Monday, January 14, 2008 - 7:49 pm
I havent Dovez but havent been tested for it either, so I guess my answer is heck I dunno! lol Kar, maybe take the B early am???? love and hugs to all.
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Pamy
Member
01-02-2002
| Monday, January 14, 2008 - 7:49 pm
ps Costa...well darn! but I like how you look on the positive side 
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Sunshyne4u
Member
06-17-2003
| Monday, January 14, 2008 - 8:20 pm
the disease does not exist I feel it is best to not get angry or upset. it is NOT a disease technically. It is a cluster of symptoms that can be a number of diseases. I've said that more than a few times. It is the reason that Fibro can present in so many different ways.
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Karuuna
Board Administrator
08-31-2000
| Monday, January 14, 2008 - 8:34 pm
Pamy, I decided to start with just the enzyme powder, and see how that works. I looked at the bottles of B6 and B12 that I have, and the B12 is the same amount as in this capsule (500) but the B6 is much stronger (200 vs 85). Plus the B capsule has 4 or 5 other kinds of B vitamins. Once I've done the powder for a few days, I'll see how I feel and then decide how to move forward.
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Sunshyne4u
Member
06-17-2003
| Monday, January 14, 2008 - 8:51 pm
"Drug Approved Is Disease Real?" http://biz.yahoo.com/nytimes/080115/1194736783281.html?.v=17 I agree profusely with the focus of that article. Indeed, Fibro is going to be overtreated. Lots of people have OTHER disorders which are going to be ignored more often....because of the 'label of fibromyalgia'. both work by increasing levels of serotonin and norepinephrine, brain transmitters that affect mood. So if MOOD meds will help for some fibro patients, this confirms that it is somehow related to brain function more than a disease process. Lyrica is a serious Med. I've read some research that seems to indicate long term use of some of those Gabapentin type drugs can permanently affect the nerves. But I cant remember details, I read it years ago. All I know is that a friend's doctor Refused to put him on Gabapentin/ neurontin because once you are on it, you lose your ability to cope without it. I have to admit. The few times I tried to quit, I couldnt do it and I have really high pain tolerance. SIGH. No biological tests exist to diagnose fibromyalgia this comment isnt correct though. I'm pretty sure that there are some Spinal Fluid indicators that can PROVE chronic pain condition and MRI doesnt lie. However, I dont believe many fibros would be positive. I think the syndrome as 'Part of another disease process' would render the results ambiguous. then what?
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Pamy
Member
01-02-2002
| Monday, January 14, 2008 - 9:12 pm
sounds good Kar....cant wait to hear! ((Dolphin))) Sun, good points!
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Babyruth
Member
07-19-2001
| Monday, January 14, 2008 - 9:53 pm
This is from September: September 27, 2007 Research may explain why common painkillers often don’t work on patients with fibromyalgia People with common chronic pain condition have less availability of a pain-deadening receptor in the brain, UMHS study finds ANN ARBOR, MI – People who have the common chronic pain condition fibromyalgia often report that they don’t respond to the types of medication that relieve other people’s pain. New research from the University of Michigan Health System helps to explain why that might be: Patients with fibromyalgia were found to have reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine. Fibromyalgia scan
The study included positron emission tomography (PET) scans of the brains of patients with fibromyalgia, and of an equal number of sex- and age-matched people without the often-debilitating condition. Results showed that the fibromyalgia patients had reduced mu-opioid receptor (MOR) availability within regions of the brain that normally process and dampen pain signals – specifically, the nucleus accumbens, the anterior cingulate and the amygdala. “The reduced availability of the receptor was associated with greater pain among people with fibromyalgia,” says lead author Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue Research Center. “These findings could explain why opioids are anecdotally thought to be ineffective in people with fibromyalgia,” he notes. The findings appear in The Journal of Neuroscience. “The finding is significant because it has been difficult to determine the causes of pain in patients with fibromyalgia, to the point that acceptance of the condition by medical practitioners has been slow.”... link to entire article
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Dolphinschild
Member
06-21-2006
| Monday, January 14, 2008 - 11:14 pm
Well the pressure between my shoulders are still gone, but the fog rolled in and I ache every where else. I also feel depressed tonight. I guess it is the whole barametric pressure thing going on. Babyruth, thank you for sharing the article up above. I plan to read it when I can focus a bit more.
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Dovez
Member
08-27-2005
| Monday, January 14, 2008 - 11:50 pm
here is another story out today on fibro. of course when a new drug is introduced all sorts of publicity insues. note the surveys...at least most people responding believe that the disease is real. http://news.aol.com/story/_a/drug-approved-is-disease-real/20080114101709990001?ncid=NWS00010000000001
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Karuuna
Board Administrator
08-31-2000
| Tuesday, January 15, 2008 - 10:42 am
Fascinating article, Babyruth! Thanks for posting it. Okay, I chickened out a bit on the enzyme supplement. Took just a half scoop, instead of the whole scoop recommended. Probably a good thing, 'cause I'm feeling a bit wired - and a little uncomfortably so. I also didn't take any of the B complex capsule.
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Calamity
Member
10-18-2001
| Tuesday, January 15, 2008 - 12:17 pm
The second hour of today's Diane Rehm radio show discussed fibromylagia. I was only able to half-listen to the broadcast and must confess I still don't quite understand the condition but thought perhaps there might be some helpful information for those of you dealing with it. Show link
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Mameblanche
Member
08-24-2002
| Tuesday, January 15, 2008 - 12:45 pm
Thankfully I'm feeling at least 75% better today. Had a looooooooong, very hot soak for 3 hours last night & got through 1/2 the book The Golden Compass. Still sore, but much less stiff and ouchy. Yay! ((((DC)))) I'm so grateful that even with the worst of the pain I didn't get the blues, although being in pain is maddening.
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Costacat
Member
07-15-2000
| Tuesday, January 15, 2008 - 6:14 pm
Yay Mame!!! 75% better is a LOT!!!
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Mameblanche
Member
08-24-2002
| Tuesday, January 15, 2008 - 6:21 pm
I'm also getting cabin fever... and that's a good thing for a cyber-hermit as a RL pal calls me.
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Karuuna
Board Administrator
08-31-2000
| Tuesday, January 15, 2008 - 7:20 pm
Okay, third section of transcription! THIRD SECTION Oz: Dr T, what is the third most common hormone abnormality? Dr T: Take a look at who most often gets CFS and FM. It’s women in their 40’s, late 40’s. That’s the biggest demographic. These are women that are peri menopausal. And estrogen, progesterone and testosterone deficiencies in both men and women are very important in menopause and andropause. The blood tests will not be abnormal until you have been estrogen deficient for 5-12 years. How do you tell if you need estrogen? If you have pain, fatigue and brain fog and its worse around your period. I’m not talking about PMS, but the poor sleep, the brain fog and the FM symptoms, the low estrogen is contributing to your symptoms. To use premarin or synthetic estrogens is very very dangerous, we’ve been saying this for decades. The only reason I could justify giving those synthetics to a woman and is because they were patentable and therefore expensive. The bioidenticals are not patentable and therefore cheaper, so they weren’t used. The whole controversy between synthetics and bioidenticals has revolved around the cost and the patentability. The bioidenticals, the estriol, you decrease the risk of breast cancer and heart disease – it’s very safe. Use bioidentical progesterone. Provera, I think, is dangerous. Increases cancer risk and is hard on the heart. (jokes about pregnant horse pee, which is where Premarin comes from). Oz: What percentage of women going thru menopause, who are asymptomatic (not having symptoms), would benefit from being on these? DrT: If you feel great, stay away from the doctor, except for your basic yearly tests. It’s when things aren’t working, you feel like you are aging too quickly, you have loss of libido, you have hot flashes, (recommends black cohash for hot flashes 2 twice a day for 2 months, then 1 twice a day). If you get the FM, the achiness, the fatigue, the brain fog – take bioidentical hormones, estrogen and progesterone. If I was a woman in my late 40s, I would be on them. Even if you had a hysterectomy, take the bio identical progesterone. Because it prevents uterine cancer, it’s critical for sleep, it’s critical to prevent anxiety, it’s critical for the GABA transmitter, and women need that. If you’re anxious, you need more progesterone, if you’re depressed, you want less. Testosterone is not just for men any more. If you want your libido back, you want your energy back, and you want to stay younger and healthier, keep your testosterone optimized. Oz: You have not mentioned DHEA, the grandmother of hormones. DrT: DHEA is an adrenal hormone, and it is a precursor for many others, as is Pregnenolone. They’re finding it is horribly low in CFS and FM clients, and Pregnenolone you can get over the counter. If you get this tested and it is under 50 (most FM will find it is under 20) should be 100-150, you can take 50-100 at bedtime. I like to get the individual hormones and tailor the plan; but I will give the DHEA, but you have to look at the blood testing – the blood tests really guide me more. Oz: Patients frequently ask about taking it because it’s over the counter, but you are saying you should have the testing done before you take it. Even if it’s not low, as you are saying, if you’re feeling badly, is it okay to take it? DrT: I give the DHEA to most people with this disease because most people are low. It’s not one of those things that more is better. If you take too much, you’re going to get acne and dark facial hair. Most women don’t like that (laughter). Should be used with testing, so you can be guided by that. Oz: Why is it being sold over the counter? DrT: That’s all about politics. DHEA should be prescription, but most doctors are clueless about using it, so it’s good that it’s OTC. But you should be able to get any blood test you want, just tell the doc what you want. If the DHEA sulfate level is under 110 for women and under 300 for men, you can supplement. At my website, you can see what the range should be and how much you should take (vitality101.com). There are tables to guide you. Oz: Let’s start talking about pain. It’s a whole separate category, but it’s part of FM as well. When you were here lst time, you talked about how less than 1/2 of the people who have pain get adequate therapy. So when you see folks with pain, where do you start? DrT: It’s important to understand that pain is not the enemy. Pain is the body’s way of saying that something needs attention, like the oil light on your dashboard. I call it the SHIN light. Much of the pain in this country is due to an energy crisis and secondary muscle shortening because of that energy crisis. And also inflammation and impingement. When we look at those areas, we will eliminate most causes of pain, but you have to tailor it to the type of pain. So for most everyone with pain, I’ll put them on the vitamin powder, I’m going to make sure they get 8-9 hours of sleep per night. I’m going to make sure their thyroid is optimized. If they have nasal congestion, sinusitis, spastic colon, I’m going to treat the yeast. People with horrible severe pain, that are ready to commit suicide--it’s remarkable how often if you treat the underlying either antibiotic or viral sensitive infections (like HHV6), that pain goes away. But for the other pains, say it’s arthritis… Oz; (interrupts) What’s HHV6? DrT: It’s human herpes Virus 6, it’s a virus related to Epstein Barr virus and chicken pox. Oz: Should kids get chicken pox vaccines? DrT: yes Oz: Why not let them get immunity thru the illness itself? DrT: I think that the biggest jump forward in public health is getting vaccines. But more is not better, and we can overdo. When our kids were young, we would just take them to a friend’s house who had chicken pox, at a time when it was convenient. But once we gave it to them, I’ll treat them with Valtrex, which is an antiviral. It’s shortens the course dramatically. But now I prefer the vaccine. DrT: back to pain. Treat the viral infections for severe pain. But let’s look at each kind of pain. Arthritis is a great example. You have over 16,500 unnecessary deaths per year from NSAID (motrin, etc) use. These are conservative figures. Glucosamine and chondroitin, are shown to be more effective than celebrex. But the study that showed this was headlined ‘celebrex more effective than natural remedies’. Ten of the scientists that did the study worked for the pharmaceutical company. Even tho the data proved that the natural remedies were more effective! Let me give you some statistics: The data show that if a study is paid for by the pharm company, is 400 to 2000% more likely to show a positive result given the same data than if it is done independently. IMO, anything done by a pharmaceutical company is a waste of data. But almost all the research is funded by those companies. In the 70s, that wasn’t the case. Oz: back to pain…. DrT: Arthritis, you take glucosamine sulfate, 750 mg twice a day, chondroitin and MSM, 2500 mg a day, and a product called EndPain, which is willowbark and boswalia. You can get it at a health food store, or on the internet. Willowbark is twice as effective as motrin, boswalia (also known as frankincense) dropped arthritis pain by 90% in one study. Again, take 2-3 times a day for 6 weeks, it takes that long before it helps. You can take your regular medicine with it, but then pain will go down and you can talk to your doctor about coming off the medication. We also talk about physical medicine, heat, things like that, treating food allergies. But those four areas will really dramatically improve and often eliminate arthritis pain. Lisa: Do you change diet at all? DrT: You gotta cut out the sugar, and it helps to cut down on white flour. Flour will be one of the food allergies that will trigger it in a number of people. So try an elimination diet, and I have a sheet on how to do that on the website, you do that for ten days and if the arthritis goes away you have to treat the food allergies. There’s a wonderful acupressure technique called NAET, that’s excellent for food allergies, it eliminates them. It knocked out my hay fever, in 20 minutes, in one treatment. That got my attention. You remember my policy, I don’t take any money from any natural remedy or food companies, or any pharmaceutical companies. All the money from my products goes to charity. One of the studies we funded was using NAET for autism, 23 of the 30 kids were back in regular school by the end of the year, as opposed to 0 out of 30 in the control group. You can find out more at NAET.com. But back to pain, sorry about that! Migraines, you can prevent migraines naturally by taking Vitamin B2, magnesium, B6 and B12. All of that is in the vitamin powder (Energy Revitalization Formula). You can also use an herb called ButterBur and it’s very easy to prevent migraines. If you have migraines around your period, it’s caused by a drop in estrogen, the book talks about how to use natural estrogen just around your period to block those out. Back Pain: For disc disease you don’t need surgery, for sciatica. You can knock out disc pain without surgery with 6 intravenous doses, once a week, of an old herb turned prescription called Colchicine (sp?) By about dose 5 or 6, esp if you give the vitamins and minerals, we have about a 90% success rate in eliminating sciatica. Any holistic doctor can do this, your doctor can Email me for information about how to give the ?Colchicine. Oz: How does colchicine work? DrT: It’s an anti-inflammatory, it gets into the disc space, when the jelly that supports the disc leaks out, it’s very inflammatory, that swelling pinches the nerves. You turn off the inflammation, the swelling goes down , takes the pressure off the nerve, the pain goes away. Oz: As I look towards the future of how we manage pain in this country. I don’t think we do that right now. We tend to stalk physicians who use a lot of pain medications, maybe appropriately so. But it’s often onerous, and so they don’t want to go into the field. I actually don’t think we know much about pain. One big shortcoming in the way we train doctors is the most common problems are the ones we hear bout early in our career. When we come back in the post-op, let’s talk about how we overcome that, and how we change the paradigm of how we train doctors. END SECTION THREE.
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Pamy
Member
01-02-2002
| Tuesday, January 15, 2008 - 7:47 pm
Calamity, thanks so much for posting that link!! Mame, so glad ya feel better!! xoxoxooo I am having sharp pains tonite but I have been working very hard and had lots of stress this wkend. Kar, thanks for doing that, I am gonna read in a bit! and print it out with the other 2 parts 
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Sunshyne4u
Member
06-17-2003
| Tuesday, January 15, 2008 - 7:54 pm
ooooooo good post Baby. As someone who already knew Morphine doesnt work for me, it was great to actually see PET scans. There are tests out there to prove whether a person truly has fibro/ cfs from Kar's link DHEA is an adrenal hormone, and it is a precursor for many others, as is Pregnenolone. They’re finding it is horribly low in CFS and FM clients, and Pregnenolone you can get over the counter. If you get this tested and it is under 50 (most FM will find it is under 20) so there you go! yet another test
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