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Archive through January 01, 2008

The TVClubHouse: General Discussions ARCHIVES: Jan. 2008 ~ Mar. 2008: Health Center: Fibromyalgia & Chronic Pain: Archive through January 01, 2008 users admin

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Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 3:10 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
I personally think everyone as an individual needs to be an expert on their own health, and I think that is what we are all trying to achieve here

you cant be an expert without education knowledge and the ability to interpret what That knowledge material even really means.

I've worked with people who 'just didnt understand' and they needed people like me to lay it out for them. This stuff can be very complex and I dont believe that a layperson can make clear decisions to self diagnose or self treat without at least passing it by a Doctor or specialist. Does anyone know what happens longterm to the body if you dont take your hormone replacement? OR what happens if you take a naturopathic remedy at the same time as some of the prescription med?

Even I wouldnt pretend I know as much as a Pharmacist, I'm surprised to see it here.

I've heard of tons of 'cures' thru the years, none stand up to any real scrutiny (such as done for Methodology / quality control studies) needed to become mainstream.

not saying that the basic concepts are founded on strong history and they work to a degree for many people.

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 3:11 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
To finalize my post I'd like to use Mame's comment as a final thought. If our bodies tell us stuff, why do smokers and drinkers think that it doesnt cause them any problem? Why do some hyperthyroid people feel Excellent and full of energy and dont want to be treated? Why does cocaine make an athlete perform at the top of level of their game?

Our bodies work in the way that they are used to and what we WANT.

if smoking and drinking made everyone feel horrible, there would be much less in the world.

I'm being convoluted again I notice. But the body is Not the best judge of LONG term possibilities.

it is more like 'how i feel Right Now' not....if I continue this what will my kidneys and liver be like in ten years.

damage can take place and we have no idea until it is too far gone. you have to lose about 75% of your kidneys before we even detect it in a test.

i use that as an example because many of USA herbal remedies and treatments cannot be gotten in Canada because proper studies have not been done.

All I want is people to be clear and understand the risks when they choose to selftreat.

Karuuna
Board Administrator

08-31-2000

Monday, December 31, 2007 - 3:29 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Sunshyne, I don't see that we are saying anything that different.

I think people need to step up and become educated about their medical conditions so they can make the decisions that are best for them. That includes hearing what the doctor (perhaps what several doctors) have to say; as well as researching alternative possibilities. Most of us have had the experience of being badly failed by doctors, so it's important, IMO, to never just give yourself over to any doc, and just blindly do what they say. That's all we're saying. :-)

I don't think there is anyone here that needs to be lead by the hand. Bunch of strong, intelligent, capable women - all of us!

There are risks with self-treating, and frankly there are also serious risks with just doing what the doctor says to do also. So you are right, you have to learn about your personal issues and always evaluate and research yourself what anyone tells you.

Heck, how many approved prescription medications ended up with serious consequences for those who took it on their doctor's advice? Addiction, heart problems (and even death) and diabetes are all currently in the US news as having been caused by prescription medications.

So who knows what studies are 'proper'?

Mameblanche
Member

08-24-2002

Monday, December 31, 2007 - 3:32 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Sun, When my mom says Our Bodies Are Our Accountants, mom also means that after a night of bingedrinking, the body pays us back with a hangover... or worse, eventually cirrosis of the liver, etc, if we overindulge in fatty foods our bodies thank us by expanding, and giving us heart trouble etc, and we all know the bodies payback for some smokers, etc.

In other words it tabulates how we treat it and then gives us a bill at the end of the day. If we treat our bodies well, we are more likely to be happy with our accountant's results.

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 3:37 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
I've never said to blindly do what the doctor tells you to, I advocate a teamwork scenario with your doctor...even if ya think they dont know as much about nonwestern medicine.

I agree about the USA news regarding meds. That is why much of that isnt IN Canada. However, stuff like Vioxx was Known to cause trouble and 'hidden' by the pharm. companies. I think people should be in jail.

I didnt come back to comment on that stuff however.

It struck me that Placebo affect seems to really affect the 'word of mouth' good reports from some naturopathic meds.

That means that if there were 100 of us here, 50-75% would feel 'better' if (____anyone's name___) told us She felt better taking a pill.

Placebo effect amazes me and the results I've seen for Depression makes me wonder if it isnt 'power of the mind' more than what is in the pill.

Karuuna
Board Administrator

08-31-2000

Monday, December 31, 2007 - 4:08 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
I think the traditionally accepted percentage of placebo effect is about 35%; although it can be as high in some areas like depression (as you mentioned) as 50-60%.

Other studies show that if the sample size is large enough, the placebo effect diminishes substantially.

It is the same for prescription meds as it is for natural remedies, so I guess I don't understand your point....

Mameblanche
Member

08-24-2002

Monday, December 31, 2007 - 4:29 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
http://www.youtube.com/watch?v=BhY1fxQXa3A



Karuuna
Board Administrator

08-31-2000

Monday, December 31, 2007 - 4:34 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    

quote:

I've never said to blindly do what the doctor tells you to, I advocate a teamwork scenario with your doctor.




I agree, for the most part. It's just very very hard to find docs that agree to that concept, esp in the US, and if ya can't, you have to just step up yourself.

Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 7:11 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
LOL Mame.

HEY I figured out the 'cure' for us all!!!

http://www.youtube.com/watch?v=8IG7vu16Fug

I think it is also advocating Medical Marijuana LOL Did you know that the whole song is only ONE Chord repeated over and over so the band would basically have to be comatose }not to be able to perform it? LOL


Sunshyne4u
Member

06-17-2003

Monday, December 31, 2007 - 7:23 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
I havent researched the numbers but It seems that for real prescription meds the placebo is as low as you presented, but I was referring to 'naturopathic and herbal' medications.

What has always amazed me is the power of the mind. There often is at least a small percentage of Patients on Placebo which for some unknown reason, go into remission or are Cured.

Our local Cancer Control Agency was doing a study involving the Power of Prayer. It is recognized as having a part in recovery for some individuals.

Pamy
Member

01-02-2002

Monday, December 31, 2007 - 9:00 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
I loved that coconut song!!!!!

Pamznic
Member

03-01-2006

Tuesday, January 01, 2008 - 9:10 am   Edit Post Move Post Delete Post View Post Send Pamznic a private message Print Post    
WOW It appears we have a sceptic among us. I can't help but have similar feelings to Sun. But I also think if 100 take x,y or z and get either real or placebo real help than for that person right on. I for one have over 17 plus years trying everything under the sun. I still deal everyday with my disability. And even that takes a very strong person. (Gosh pam you look great as I smile and make a joke). So much depend on how we choose to live this live. I believe our brains are very powerful an take great stock in trying to use mine well. Losing my Husband at 38. Single parenting a 15 yr old girl and Moving back to my parents house when my Momma died to keep my 83 yr old papa company could make some well lets just say I'm not complaining. All this and Heath problems I won't succumb. I find the joy in each day with Meds or without.
There ya have it. My well two cents.... Happy New Year ya'll

Rubyroo77
Member

08-13-2005

Tuesday, January 01, 2008 - 10:01 am   Edit Post Move Post Delete Post View Post Send Rubyroo77 a private message Print Post    
I try very hard to be happy and smile everyday- I have been dealing with this for 20 years- some days I literally feel as though I am going to die..and I view myself as a very strong person!

Pamznic-I am so sorry for what you have had to go through..I think people with fibromyalgia are some of the strongest people I know- because they have to deal with the problem 24/7!

I have one chiro who gives attitude adjustments..and they really work. I honestly believe it with my whole heart! But my other chiro (they are both polar opposites) does not do attitude adjustments. I asked him if he believed they work, and he said he wasn't sure if they actually "scientifically" worked, but he said who really cares as long as they work! I liked that- but I still believe they really do work!

Rubyroo77
Member

08-13-2005

Tuesday, January 01, 2008 - 10:06 am   Edit Post Move Post Delete Post View Post Send Rubyroo77 a private message Print Post    
I have a question for ALL of you..maybe you could help me..

For the last 2 years I get this strange feeling on my skin..it feels like I rubbed ben-gay on me (my face, arms and legs) and when I go to bed at night..the body heat my husband gives off literally feels like my skin is on fire. This is not the thing I get sometimes where your skin feels sunburned and hurts to the slightest touch..this is different. Have any of you heard of this or experienced this?

Pamy
Member

01-02-2002

Tuesday, January 01, 2008 - 11:48 am   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Pamz, it is people like you that give me inspiration. I love your find joy in each day attitude. God knows, with everything you have been through it must be hard on some days.

I love hearing what has worked for others, some of you have had this way longer than some of us and your experiences are very valuable.

Even if something ya all mention helps just 1 person it is worth it!!!

I beg all of you to never stop posting/sharing anything that you have tried/heard of that might be of interest/or help one of us here.

We are all big girls and know we can check with our docs before we try something. Like I said earlier, because of something I read HERE! my doc NOW shares it with other patients. That is HUGE to me!!! so NEVER EVER stop sharing info/sharing stories and most of all never stop posting here.

This thread is also for comfort, we all can come here when we hurt and others will come hug us and we know they understand more than someone that doesnt have fibro.

I dont want anyone to worry about posting here....this thread helped me thru the hardest fibro time of my life and I thank you all for that!!

((((FFF)))

Pamy
Member

01-02-2002

Tuesday, January 01, 2008 - 12:05 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Ruby, I havent had that feeling. Could it be a heat flash? I know I am getting some peri meno things happening to me now..I am like 'great! first fibro, now this!!' LOL

Rubyroo77
Member

08-13-2005

Tuesday, January 01, 2008 - 12:40 pm   Edit Post Move Post Delete Post View Post Send Rubyroo77 a private message Print Post    
No Pamy..Just imagine putting ben-gay on you..you know how it makes your skin feel cold but hot at the same time? It also hurts in my muscles, too..it's just really bad today..I don't know if it is a herxheimer or what, but it's so hard to explain. I am not sweating or anything like that...even my docs don't know what it is..so frustrating! The burning feel on my skin when I am near my husband at night is like someone is holding a blowdryer real close..it really burns(not sweaty)..but when I am not near a heat source it feels kinda cold and numb.

I remember when it started a couple years ago..I was lying in bed, and it felt like I had a draft on my kidney area of my back..like the blanket was not covering me..but it was..so I sat on the couch and put a heating pad on my back and it really was achey..after 2 days of it, it suddenly spread up my back and into my arms and face..ever since then I get it quite often, and it's really bugging me..i feel like I need to wrap up in an electric blanket for some relief. I wish someone out there knew what it was..I get really sad sometimes because I tell docs or people and nobody understands..i guess I am just having a bad day..thanks Pamy.

Pamy
Member

01-02-2002

Tuesday, January 01, 2008 - 3:52 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
(((Ruby))) that is strange, I havent felt anything like that. Sending you healing thoughts and wishing you a great 2008!!

Karuuna
Board Administrator

08-31-2000

Tuesday, January 01, 2008 - 5:54 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Okay, here is the first part of the Dr. Oz/Dr. Teitelbaum radio show. Right up to the first commercial break.

This first section is mostly talking about what causes FM and CFS, with a little bit about some therapeutic treatments.

Dr Oz and Dr. Teitelbaum on Fibromyalgia

These notes are from a broadcast show on Oprah and Friends from XM radio. I have skipped over some of the chit chat (other than the intro) to just recap the salient points.

Oz: We’ve been doing a lot of homework recently on the energy system of the body. And for a variety of reasons in part preparation for shows with Oprah, we’ve been tackling things like CFS and FM. It’s allowed me to stay in touch with Dr. Jacob Teitelbaum, whom we’ve had as a guest before. In the course of these several months, I’ve learned a lot more about his insights and we’ve actually begun to use them on some folks with some pretty gratifying success. So, I thought we’d get Jacob back on, in part because he has a new book, From Fatigued to Fantastic, that just came out, newly revised.

Dr. Teitelbaum is a board certified internist and the Medical Director of the National Chronic Fatigue and Fibromyalgia centers.

Dr. Teitelbaum suffered from CFS himself, back in medical school (in 1975). He has recovered and now shares his research and secrets with others.

Oz: Even today, doctors have a certain amount of disbelief that FM and CFS even exist. Similar to Lyme Disease. How will this sort out?

Dr.T: There is now a growing consensus, the NIH, the CDC, the FDA even, all recognize these as real and devastating illnesses. The FDA just approved the first medication for FM. The same thing happened with MS and Lupus, they were not believed, until we came up with a test.

Oz: Are we close to getting a test for FM?

DrT: Yes, the Rnase L is one test that is very elevated in CFS and FM. CFS and FM for most people if they have one, they have the other. The Rnase L is a marker for persistent infections. Within the next few years, we will have a test.

Rozen: What really is FM? One test is for chronic infections (the Rnase L).

DrT: The illness represents an energy crisis, where people are spending more energy than they can consistently make. That’s why it is skyrocketing. 8% of the population has FM, and it’s mostly women. It occurs because of lack of sleep. Nine was the avg night’s sleep until 100 years ago, then TV, then computers and radios and all the rest. If people feel well on 6 hours, that’s great. But if you feel tired, achy, brain fog, you need more sleep. You’re going to gain weight, your immune system drops, it’s not just a matter of fatigue.

Oz: but the folks who can’t sleep, it’s not that they don’t have time, it’s that they can’t. It’s the paradox of CFS is that you are tired, but you can’t sleep. Why is that?

DrT: It takes energy to sleep, The illness is essentially an energy crisis, where people can’t make enough energy to function. The center that controls sleep, the hypothalamus, uses more energy than anyplace else in the body. When you don’t have enough energy, it goes off line and that’s why you get the paradox of exhaust and can’t sleep. That’s the hallmark of these illnesses. If it goes away with vacation, you’re fine. But in CFS and FM it’s like you blew a fuse, and you can rest and rest for years, but it won’t go away until you treat it. But people should know, CFS and FM are both VERY treatable.

DrT: What I’d like to do today is go thru the energy crisis, talk about how the ‘walking wounded’ who don’t get enough sleep and are tired, and are thus vulnerable to CFS. My Vitality 101 program, you can do three steps to get your energy back; and then we can talk about what happens if you’ve blown the fuse and you have CFS and/or FM.

DrT: For the ‘walking wounded’, three steps:

1. FEED YOUR BODY One of the reasons for the energy crisis is that we are nutritionally deficient. This is the first time in known history that we have high calorie malnutrition. People are obese and malnutritioned because of food processing, white sugar and flour, etc. I recommend that people take nutritional support. (Here Dr T gets in a plug for his own product: Energy Revitalization System, however, note all profits do go to charity J) Really, any good vitamin powder high in B complex and magnesium especially but really good across the board.

Oz: I agree that a nutritional supplement is vital to almost anyone.

DrT: I also recommend taking a sugar--Ribose (brand name Corvalen), esp for people with heart disease.

Digression to talk about Heart Disease
DrT: Ribose is the most important discovery in cardiac care. Ribose is the foundation of energy production, but dose is critical. You need to take it for at least two weeks, 5 grams, 3 times a day, to see the effect. Anyone with congestive heart failure should be on ribose, and CoQ10 200mg a day, aceytl l-carnitine 1000 mg per day (not more) and magnesium with B vitamins.

Oz: Walk me through how ribose works.

DrT: The backbone of energy production, you have to turn food into molecules called ATP and <unintelligible>, and these are made up of ribose, B vitamins and adenosine and sometimes phosphate. Your body has plenty of phosphate and adenosine. What you need are the B vitamins and ribose. Then your body can make energy. And also CoQ10, L carnitine and magnesium. The ribose is the lumber you use to build your energy house, these others are like the hammers and nails and such.

Oz: Are there foods you can eat?

DrT: You can’t get ribose from food, it’s made in your body.

Oz: What causes some people to stop making it?

DrT: When you overdraw your body’s energy account, your energy furnaces get backed up (the mitochondria), and you start dumping the substances you need. Once you get the mito working again, the substances are too low, and it takes a long time to build them back up. Making ribose is a very slow process. In the studies we’ve done, with ribose alone, 2/3’s of patients improved, with an average of 45% increase in energy. If you take them all, the gains are much stronger.

Dr T: What I do is take the vitamin supplement each morning, and a scoop (5 grams) of ribose twice a day. When you are better, you can take just two scoops of ribose per day. I do this to prevent my CFS from returning, or for anyone who is fatigued.

SECOND STEP: EXERCISE
Dr. T: Do exercise that is fun, and you can keep up with. Shopping is good exercise. Do it fun and with a friend. But only do it to the point where you feel good tired, and better the next day. In FM, people can’t exercise as much as they like, because they feel wiped out the next day, and that’s too much. Just walk a bit. If you tell your body to make energy (by exercising) it will make start making more.

THIRD STEP: REST
Dr T: You need your 8 hours of sleep. 70 million Americans have trouble sleeping. I like to use herbal things to get people sleeping. Wild lettuce, Jamaican dogwood, hops (beer, but only one!), valerian, passion flower, theonine. Again, we have a formula that contains a good mix of all called Revitalizing Sleep Formula. Any health food store, or get at the website www.Vitality101.com. Two to four at bedtime, and most people will be sleeping like a baby and they will wake up refreshed without a hangover. It’s not addictive.

Other things for sleep: calcium and magnesium, melatonin (just 1/2 a milligram). It’s not hard to get good sleep naturally. For the day to day walking wounded, those things will heal you.

I will warn you that if you try the formula, there are about 10% of people that get energized from valerian, so if that happens you can use it during the day for anxiety and for muscle pain.


First break. We’ll come back and talk more about FM and whether infections play an important role, like Lyme Disease.

Pamy
Member

01-02-2002

Tuesday, January 01, 2008 - 6:45 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
omg Kar!! you rock!!! thanks so much!!!!

salient......I learned a new word today :-)

"Here Dr T gets in a plug for his own product: Energy Revitalization System"

what is that system?? is it supplement that he sells plus the corvalen? If it is I assume his supplement contains the coq10, B, etc that he mentions.

very interesting. People ask how do you get Fibro and I am thinking the answer is years of interrupted sleep for me.

Sharinia
Member

09-07-2002

Tuesday, January 01, 2008 - 7:35 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
hi everyone!

just wanted to say that i appreciate all of the great posts here lately. i hope to reply to you Sun and post some more in here this week :-)

(((FFF)))

Happy New Year


Karuuna
Board Administrator

08-31-2000

Tuesday, January 01, 2008 - 7:41 pm   Edit Post Move Post Delete Post View Post Send Karuuna a private message Print Post    
Pamy, at vitality101.com, they have quite a few varieties of their "Energy Revitalization System". Essentially it's a vitamin powder, that is specifically geared toward people with fatigue. He also said in the show that you can go to any good health food store and just find a very strong, vitamin formula (Dr Oz sells one too). You take it in addition to the ribose/corvalen, because it contains the B vitamins, But apparently the regular multivitamins we all take are insufficient.

Some health food stores do sell his system (in bottles or premeasured packets). You can even get it at Amazon.

ETA: I believe you about the sleep thing. Now that I am sleeping better, I have much less pain, almost none this week. And as long as I stay away from sugar, I feel really strong most days.

Sharinia
Member

09-07-2002

Tuesday, January 01, 2008 - 7:46 pm   Edit Post Move Post Delete Post View Post Send Sharinia a private message Print Post    
btw, Ruby - sorry to hear about your skin problem

i have heard of a lot of strange symptoms, had most of 'em myself... but have not quite heard of that one.

i does sound like it may be toxin related, though.

when i herxed i did get extremely cold sometimes, and other times i would actually run a fever if my elimination organs couldn't keep up with the toxins. i have also had very uneven patches of skin temps. but i can't say i have had exactly what you are describing.

have you tried cleansing (kidneys, liver, instestinal)? i find it interesting that you first noticed this near your kidney area


Sunshyne4u
Member

06-17-2003

Tuesday, January 01, 2008 - 7:54 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
we have a sceptic among us.

I'm a fully educated medical professional. I also since mid 80s have been dealing with numerous medical issues requiring research and trials of 'cures' and 'treatments'.


I also do not have 'just' fibromyalgia. I've gone way beyond that.

RubyRoo, you have reached the point where your Parasympathetic nervous system is starting to react. it is completely normal as to the severity of your condition. Most "fibro" people I know do not get to that stage. You will notice that there are different complaints here and some of us are different then others.

Your description is exactly how my skin reactions first started. I would feel cold in spots even when in a hot bath. Occasionally It would feel like a cold hand was on my back and i'd feel it moving around ...sometimes moving onto an arm or leg. Very very strange sensation.

Occasionally you may itch.

My world reknowned specialist describes our condition as if the internal switch for heat or cold is malfuncioning. we cannot control our parasympathetic system.

if you are starting down this road, be aware you can start having swallowing/ drinking problems. Food and water going down the wrong pipe OR just a plain choke. I eat leaning slightly forward to lessen the chance.

I will post more if people are interested. <57>

Pamy
Member

01-02-2002

Tuesday, January 01, 2008 - 7:56 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Thx Kar. I know that it is better to take a powder vitamin, something about the pill ones losing strength longer they sit on shelf.

I cant wait for the next installment!!!!

I have been off for last 4 days, I got many things done. I have overdone it though :-( today I hurt more than I have in awhile. Lots of standing yesterday, we all went shopping for house stuff and the standing is what really kills me. Walking isnt as bad as standing.

I am kinda worried about 6 days in FL doing parks everyday but hey, if that's all I have to worry about then good for me, right? LOL