Posted on 02/25/2005 11:45:15 PM PST by Just Kimberly
I just posted a question a few moments ago regarding FMS, and wondered if anyone else here suffered with it. I went back to see I had 7 replies and 80 something plus views, clicked on it, and recieved a message it had been pulled due to 'commercial spam'. Now, I am VERY new here, and really love this place, and I sincerely apologize - but I do not know what I did wrong. I know we are able to post our opinions and questions - which is why I went to opinions/vanity. I mentioned collecting research for my website, and talked about how lonely this condition can be. I posted a message from a friend of mine which I had saved from 2002, telling her story, along with mine and my hope for natural cures - then it was gone.
I in NO way want to be in trouble here - as I finally felt I was in a place where I could be me. Will someone please tell me what I did wromg? Thank you.
commercial spam.
If you are interested in a cure. I said CURE not just help.
Go here:
http://www.freerepublic.com/focus/f-news/1343296/posts
Some of the posters there swear by it anyway. My wife is taking it now and has noticed a difference already.
I thought we could post book recommendations here. I know I have written down books that other freepers have recommended. Now I am afraid to write the name of the book.
You pimp your website on just about ALL of your posts and frankly,nobody here wants to constantly hear about your disease and your the rest of your life's problems.
Thank you for your kind words. The reply above yours made me literally want to be sick. I'm happy you are glad to have me, but apparently, no matter where you go in this world, even when you think you are safe, you are not. Thanks again, and I will check out the info.
Somehow I do not think so. But If you would want to contact me privately, I would love the name of the book. Thank you.
Click the link I posted in #3, go to reply #27 and read about guaifenesin. Available over the counter as Mucinex and probably other brands.
My wife has been taking two tablets a day for about a week and she says it is working for her.
Thank you. I will. I have recently begun research on Guafenesin, and it looks as though they may be onto something. I think Mucinex recently went OTC, if I am not mistaken, but I will check it out. VitaminB complex, Soy protein, and a plethora of other micronutrirents help me to cut the meds in half - so if I can get rid of the other half, I'm in business! Thanks again.
I'm one of those who have bad side effects to the pain meds, don't like the 'drunk' or muzzy headed feelings of their "Happy" pills. So use asprin, tylenol and advil to manage the pain of the Fibro and Osteo Arthritis in my back, hands and knee.
Mild exercise is a MUST to help keep the pain down.
My sister has a terrible time with fibromyalgia. She has been able to cure rheumatoid arthritis with diet and supplements but the fibromyalgia is more stubborn. Thanks for this thread.
I also have fibro and life can be very tough at times. But my best advice to you, no matter what relief you may seek (and I have tried many things also) it is best to try to live beyond the daily pain and aches that no one else can understand (except one who has it) and live in a way that is strong, full, positive, optimistic and determined. I very rarely talk about my FMS because I do not want a pity party and I do not want to sink into becoming weak or becoming a victim. THis is the best way I keep from letting this disease get the best of me. I REFUSE to accept victim status. Be strong and courageous and do not spend your whole life, time, energy, resources dwelling on FMS. Get beyond it.
(For pain, besides drugs (codiene works best for me but I can't take it very often as you can imagine!), VERY HOT TUBS really help take the edge off pain. Some days I am literally on fire from my TMJ joints in my jaw, down to my ankles. Soaking in a VERY hot tub really helps, especially if I cannot sleep.
Also, if you have insurance, see if you can get a special mattress. It was a miracle, but when we had good insurance with my husband's concern, they paid 80 per cent of a Tempur-pedic mattress for me. (My rheumatologist had to write a note recommending it for me.) I only had to pay a few hundred dollars for this incredible mattress. It has really helped my sleep (which is wretched enough). If you can't go that route I have noticed some mattress toppers made of Tempur-like material that are affordable.)
Anyway, best wishes to you in solidarity, stay strong and KEEP GOING!
This is to you, and the other two above you ( as I haven't learned to reply to multiples, yet).
You all are very kind in your suggestions and thoughts. I will definetly look in to the other thread, and I completely agree about using other alternatives in stead of what I call the 'cocktails' modern medicine has to offer.
I used to be one not to talk about it, either. They 1) didn't understand and thought I was looking for sympathy, or 2) had alot of sugestions, trying to be 'helpful', but ultimately told me 'they' had just as many problems, or worse,and I would just have to learn to live with it.
It is so true, unless you know the pain - or are close to someone who does - there is no way to understand how this condition effects your life. Just getting out of bed in the morning can be a chore.
I have begun a support group at Oprah, and have had many inquiries. It amazed me as to how uneducated even the sufferers are - due to misinformation from their doctors, and lack of support from the 'normals'.
In the beginning, I felt very sorry for myself, and did go through the five stages of grief as though I had lost a loved one. I suppose I did: me. But,as I studied, dug through all the info available - I found out the natural approach was much more helpful, for me and many I had met along the way. The daily supplements and Soy I take FAR out weigh the meds the doctors gave me. It was then - when I discovered the TRUTH, and my eyes were opened about micronutrients and how your body can really take care of itself if you give it the right tools - I decided to get the word out to everyone I came in contact with. It was then that I decided to share the good news, and became a nutritional consultant.
Being optimistic EVERY SINGLE day is the only way to go. God sees me through, and I refuse to give into this illness. I now spend my time and energy dwelling in the good sense - trying to reach those sufferers who are still lost, wandering around looking for a way to make it through another day, and trying to educate the public as to how real this illness is. Many doctors still do not believe this is legitimate, and will label one a drug seeker in a heartbeat!
To me, talking about it and educating, and researching is BEATING IT, not letting it BEAT ME! The most courageous thing I have ever done is to step out and bring this subject to light. Staying in the shadows, going it alone, and allowing the medical community to continue to deny us, was something I could not allow to happen.
I have learned that Nutrition and dealing with chronic illnesses is a lot like attempting to spread the gospel. People either look at your research and accept it, or they don't. I had one lady come into my husband's place of business, see my sign for nutritional consulting, and almost end up in tears because she had been searching so long for someone to just UNDERSTAND her.
My FMS has left me without a job, a house, and some friends and family. BUT, it has gained me a wealth of dignity and respect because I know it is possible to reach out and give hope to others - in ways I never thought possible! FMS consumes me, because I will not let it beat me, I will not let it beat others I know who have it, and I will not let the medical community beat US and belittle our exisitance, just because they STILL do not understand it.
One more thing - I have visited many message boards regarding support, FMS, being the wife of a Firefigher, etc. - and the one thing I have realized - people have VERY LITTLE TOLERANCE FOR OTHERS WHO ARE NOT JUST LIKE THEM. And often, those who ARE just like them, have very little tolerance because they want to put it away and pretend it doesn't exist. One group I visited only accepted messages of 'pity me', and refused to post any message of hope. Such a shame.
I also refuse to let FMS get the best of me - but I will fight every day, on my blog, on my website, through any medium I can, to help those who cannot find their way. One person cannot make a difference? Oh yes you can. You just have to do it one person at a time.
The problem is....all psychogenic and in your head! Fibromyalgia is a bogus diagnosis that doesn't exist. Fibromyarse.
i do know that there are alot of natural medicines out there for your condition. my daughter is living proof of how herbs can help, she had 9 different fungus's in her brain and nervous system, in which ear specialist told me that the black substance she had in her ears was normal, but after just 3 days of being on the herbs the fungus's were completely gone. the black substance was fungus. her eyes would dialate all of the time. and the herbs stopped that also. her getting this problem didnt start till 3 days after receiving vaccines, although the doctors said noway the shots caused this. of course they have to say that don't they. maybe you should look further into herbs, i really do think they could help you.
I wish you were right, because it might be easier to feel better if, it were just "in the head"... the problem is that you ache all over your body-- when you get a flare it is like your whole body in on fire-- I can't see how this is "in the head", my research says it is the facia of the muscles that become inflamed, which leads to the all-over pain feeling...
for me, I have a tough time with things like lifting the laundry out of the washer into the dryer, back out of the dryer, carrying heavy parcels... lifting my little girl... I get my kids or others to lift stuff in and out of things... getting in and out of the car is so painful...driving the car... yes, getting out of bed takes MAJOR resolve... I wake up in pain every morning, my muscles hurt so bad... you can touch my muscles and I literally jump from the shock... now you can call that In the head", but to my experience, it is in my muscles... living life feeling sore 24 hours a day is no fun and I would not wish it on anyone....
it might help to listen to what others say who have this problem.
Also, there are other conditions like chronic fatigue and MS that mimic FMS... some doctors think there are a bunch of related syndromes which manifest slightly differently in different people--- all of which are this thing we have. Some say it comes from vaccinations as children; some say it comes from the Epstein-Barr virus; some say it is exacerbated by stress (this I know)...
it is not wise to say something does not exist before you have researched it out carefully.
I very rarely do this, but I must ask you - on what do you base that opinion? Do you have documentation to back that up? Can you direct me to ANY medical journal, article, etc that can back up the hateful words you have posted? Not only have you posted to me - but you have consequently belittled EVERY person, here and everywhere else - who live with this each day of their lives. I have over 100 + sources I could throw at you to prove YOU are wrong. Give me ONE piece of evidence that tells me you are RIGHT.
The following is from:
http://www.immunesupport.com/library/showarticle.cfm/id/6192
"Fibromyalgia: New Insights Into a Misunderstood Ailment
ImmuneSupport.com
01-10-2005
Health experts recommend sleep, nutrition goals for sufferers
By Holly VanScoy SATURDAY, Jan. 1 (HealthDay News) --
Fibromyalgia was once dismissed by many traditional medical practitioners as a phantom illness.
But that view is changing rapidly. Not only is fibromyalgia accepted as a diagnosable illness, it is also a syndrome that researchers are finding more complicated as new information emerges.
As recently as a year ago, many physicians still associated some of fibromyalgia's symptoms with emotional problems, but that's no longer the case.
A simple description of fibromyalgia is that it is a chronic syndrome characterized by widespread muscle pain and fatigue.
For still unknown reasons, people with fibromyalgia have increased sensitivity to pain that occurs in areas called their "tender points." Common ones are the front of the knees, the elbows, the hip joints, the neck and spine. People may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety and other symptoms.
According to the American College of Rheumatology, fibromyalgia affects 3 million to 6 million Americans, 80 percent to 90 percent of whom are women. The condition is most often diagnosed during middle age, but at least one of its symptoms appears earlier in life.
But is there a psychological tie-in strong enough to differentiate fibromyalgia from other similar diseases and conditions? Apparently not.
"Fibromyalgia patients are such a diverse group of patients, they cannot all be the same," said Dr. Thorsten Giesecke, a University of Michigan research fellow.
Giesecke and his colleagues evaluated 97 fibromyalgia patients, including 85 women and 12 men. The patients underwent a two-day series of tests, answering questions about their coping strategies and personality traits -- particularly their emotional well-being. They were also tested for sensitivity to pressure and pain.
"It's generally been thought that fibromyalgia patients who have higher distress have higher pain sensitivities," Giesecke said.
In other words, it was believed that those with fibromyalgia who were prone to emotional difficulties such as depression and anxiety were more likely to experience greater physical pain.
But his study didn't bear that out. In fact, patients in one of the three groups in the study who had the highest pain levels had the lowest anxiety.
The term fibromyalgia comes from the Latin word for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia). Tender points are specific locations on the body -- 18 points on the neck, shoulders, back, hips and upper and lower extremities -- where individuals with fibromyalgia feel pain in response to relatively slight pressure.
The U.S. government's National Institute of Arthritis and Musculoskeletal and Skin Diseases says fibromyalgia patients often experience combinations of many other chronic and frustrating symptoms, including:
sleep disturbances,
morning stiffness,
headaches,
irritable bowel syndrome,
painful menstrual periods,
numbness or tingling of the extremities,
restless leg syndrome,
temperature sensitivity,
cognitive and memory problems, sometimes referred to as "fibro fog."
Latest research indicates that fibromyalgia is the result of internal biochemical imbalances that cause physical symptoms such as pain, weakness and mental impairment. Because it is a syndrome -- a collection of signs and symptoms -- rather than a disease, fibromyalgia can't be diagnosed by an invariable set of specific symptoms or reproducible laboratory findings.
Even with the findings about relatively small psychological influence, practical experience seems to indicate that stress may play a role. Roger H. Murphree, a Birmingham, Ala., chiropractor who specializes in treating patients with fibromyalgia and chronic fatigue syndrome, said he has seen a link between stress and the intensity of fibromyalgia.
"Most of us live in a world of stress," Murphree said. "Something has to give, and it's usually sleep. Meanwhile, we subsist on junk food, caffeine, alcohol and prescription medications. Such a lifestyle isn't good for anyone. But for an unlucky few, the toll is severe."
Dr. Jacob Teitelbaum, whose practice in Annapolis, Md., led him to do research into fibromyalgia and the closely related chronic fatigue syndrome, concluded that the body's endocrine system could hold the clue to treatment. It's a matter of how the body's energy is marshaled, he said.
"Fibromyalgia is like the body blowing a fuse," he explained. "The hypothalamus serves as humans' internal fuse box. When the demands of living build up, stress increases and the hypothalamus shuts down. Because the circuit is overtaxed and the fuse is blown, the body simply can't generate enough energy."
"That causes muscles to cease functioning in a shortened position, resulting in pain all over the body and a general feeling of fatigue or weariness," Teitelbaum said.
Murphree's experience with hundreds of patients confirms Teitelbaum's analogy. Most, he said, are either "Type A" perfectionists or "Type B" caregivers.
"Type A fibromyalgia patients work and work and work until they burn out," said Murphree. "Type B patients give and give and give -- nurturing their spouses, children, family and friends -- until they break down. Anyone whose lifestyle includes very little downtime is at risk."
Teitelbaum recommends a four-pronged approach to repair the "blown fuse" and turn the body's current back on:
Restoration of sleep -- at a minimum, eight to nine hours every night, using appropriate medications, as needed;
Restoration of a normal hormone balance, including thyroid, adrenal and reproductive hormones;
Appropriate treatment for infections that may be present as a consequence of the body's depleted immune function;
Nutritional support, particularly with B complex vitamins, magnesium, zinc and malic acid.
Teitelbaum uses the acronym SHIN to summarize his treatment regimen. "S is for sleep, H for hormone balance, I for infection control, and N for nutrition," he explained. "The important thing is that all four should be implemented in concert with one another for maximum therapeutic effect."
More information
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (www.niams.nih.gov ) offers more information on fibromyalgia."
This is just one of the multitude of articles I have. The above mentioned site updates frequently. I urge you all to check it out.
This website was set up to discuss politics, culture and conservativism. How does fibromyalgia - and touting your own website - fit into that mix?
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