I've tried to open your sharepost on "more About FM on Oprah" numerous times today, using several different angles and none of them work.
I have been able to view all others, excpet this particular one, so I'm finally thinking that there may be something wrong with the link and each different way I try to get it open is just not working. HHHMMMMMM
Since I'm able to comment, yet not open the full article, maybe you could send me a copy of your share post???
Sorry, I'm so curious as to what your answers were, that this silly thing is making me nuts.
Karen,
Thank you so much for following up on our questions and comments. You expressed what I had been thinking, and gave me some new thoughts on how to answer questions about it for friends and family. Also, thanks for fixing the "fibro-fog" message -I thought it was just me forgetting how to access the posts!
I too have been wondering about the whole thyroid issue on Oprah. Having recently been diagnosed with hypothyroidism, I have a hard time believing it is caused by my "swallowing my words" and repressing my feelings. With support sights like these, I think I have been expressing myself more than ever!
Thanks again,
Jenny
Now, these is just my conclusion. Remember, I am a little unstable right now after being diagnosed as chronic daily depression on top of my migraines I have had for 40 years or so.
About 15 years ago in our community here, we were at that time starting to grow at a very alarming speed, there were just about 3 doc's I believe that would diagnose one for Chronic Fatigue Syndrome. As far as Fibromyalgia, in this group of doc they ofcourse were also the only ones who would see someone with Fibromyalgia symptoms. My doctor had to leave practice
because of her health. I miss her so! I have yet to get a doctor to understand that condition.So, I may have to go out of town for health issues.
I am not much at checking my typing or wording so if you have problems reading this email I apologize.
I will say that I do agree with the comments on Ms Oprah. She has drastically changed. Yet, she still is the kind hearted, giving , and loving person that she always has been. Yet, I feel there is a change in her. It is something that I can feel. I also can tell by her body language and her eyes.
Terrible to say but truthful I don't trust Oprah.
She kind of has a holier than thou attitude about herself . I really do think that she thinks just because she made it big that everyone else can.
Take care everyone and thanks for allowing me to air my thoughts.
Marlene
Thank you Karen
I have been wondering about this message for days.
I'm really thankful that your friend found a way to cure her FM.
I totally agree with you on the aspect that each of us are so different in the meds, treatments and therapies that work for us as individuals and that this situation is probably the very most difficult one to understand, except and live with.
Your comments are now causing me to look at the therapies that I use and try to establish a numerical value to how much each one helps me. Or which ones just make the illness more bearable and don't really have any positive medical change in their process of helping me.
Since, the only part of my dietary changes has helped is with my digestion problems, but I've never really felt that my main problems was my diet, then I may have to take a harder look at the rest of my treatments and maybe the clue in what is wrong with me and what may heal me is in another source.
I feel that my other chronic pain issues are possible an irritant for the FM to show it's ugly head, then it complicates my recovery process and I really don't feel and have never even been told by any physician out of the many that I've been examined by, that there is any cure to my spinal pain. They all have said that I will have to endure the horrible treatments and medications forever. so unless they come up with some great, safe spinal surgery, I don't really have alot of home for a cure.
I have alot more I'd like to comment on, but I'm going to go to dinner with my hubby and I'll be back in a while.
Thank you Karen for adding this good response.
Betty
Hi Betty,
In the end, I'm not sure they will find that FM has just one cause. I suspect there are a number of things that could cause it and it possibly could be the convergence of several factors that results in FM. By the same token, I'm not sure any one treatment will ever cure all FM patients. It will likely be a combination of treatments and may possibly be a different combination for different patients.
With that in mind, if the dietary changes you have made have helped your digestive problems, I certainly wouldn't abandon them. One theory is that there is a link between digestive problems and FM –– not that it is a cause, but that it can be a contributing factor. Research has shown that FM patients have lower levels of seretonin than normal. More seretonin is produced in the gut than in the brain. Therefore, digestive problems that interfere with the production of seretonin could be contritubing to some of our FM problems. Since most people with FM have one or more digestive difficulties, this makes sense to me. While improving digestion may not cure FM, it can't hurt and most likely helps.
You also mentioned that you thought your other pain problems could be an irritant for your FM. You're right. FM is a pain amplification problem. Basically, it can take what would be a minor pain for most people and cause it to be magnified and spread throughout the body. More serious pain can be even more of a problem. Until they can find a way to turn off or desensitize that pain triggering element in our central nervous systems, any other kind of pain we experience is likely to make our FM worse.
You're on the right track. Educating ourselves and taking charge of our own healthcare is the best thing we can do for ourselves!
Karen
I don't have any thyroid problems, but I've never head of Tyroid issues being caused by abuse or women swalling their words????? Is this just another illness Oprah can blame on her up bringing????
I don't think any one should be abused in the manner that Oprah has, but I don't find the connection with her new found Thyroid diagnosis?
Have you or anyone else ever heard of this theory? Or has she just found a doctor that would agree with what ever life trauma that Oprah wanted to blame it on.
I'm really disappointed with Oprah and really frustrated that we FM patients cannot seem to find a Public platform or program that will give us a valid honest & fact filled response to our disease, illness, syndrome or what ever anyone wants to call it. It seems to continually change and I'm really not sure what we are to call it now.
I guess they don't think that they will draw any interest or a viewing audience to actually have real sufferers and the doctors, specialist who treat them on their programs. I guess it feels so frustrating that no one will give a decent fair shot at giving the public the truth and possibly doing some good for a large group of chronic pain sufferers. Maybe if they could get some talk show or program to have one on all chronic pain and having patients and doctors who deal with all the different types including FM and Chronic Fatigue, then we could get some interest. I don't know.
Thank you for giving us some ideas on how to deal with all the many suggestions that we receive from everyone who knows us.
I guess the helpful people that bother me the most, are the ones that have been told numerous times that you probably will not get better and will have to deal with this the rest of your life and they continue to insist that they are going to find the cure and they will not except the reality of the situation and continue to behave as if your life is so crappy in their eyes, they dont' know how you can live with your life, as to them it's no longer worth living.
I have a couple of family members like that and they really can be distressing to talk with.
Thanks again for fixing this topic
Betty
Hello fellow Fibromites. I was diagnosed in 1995 and have tried just about every 'new-life-changing-cure' for FM, or have had close friends try them. I have been our local FM self-help group president since 1996 and have had all the snake-oil salesman approach me and my group.
Nothing has worked to ease my symptoms other than morphine for pain, NO STRESS at all costs, quality sleep, eating properly and regularily, gentle stretching when able, naps and resting - waking only when my body tells me to, and by trying to look at the cup as half full (the "It could always be worse" theory). Also, this has taken over 13 years of 'trial-and-error- on my part to find the treatments that did help me - even if only just a bit.
I haven't been able to work since pre-diagnoses and am lucky to have a disablity pension. During the past 13+years with debilitating FM I did somehow manage to squeeze in an entire month of the elusive <angels singing> ... REMISSION!!
There didn't seem to be anything that I'd done to deserve it or work for it; it just came on its own, lasted 30 glorious" oh-that's-what-normal-is-supposeed-feel-like" days, then disappeared into the FibroAbyss again. <sigh> That was June 2000. I heard of remission before but had never heard of it actually happening. No meds. No pain. Slept like a baby. ..... Heaven!
As far as changing one's diet as a 'cure' for FM, I'm not buying that. I've changed my diet, as per dr's instructions, to try to help my FM symptoms with little or no change. I've heard Sylvia Brown on Montel's show state that Fibromites should eat a mostly protien diet to help their FM. That just sent my raging IBS into a super-flare that I'd rather never live through again.
However, I did find that allergy testing helped me narrow down the foods that were aggravating the FM symptoms the worst such as tomatoes, citrus, caffeine, wheat and some dairy.
I went through a naturopathic dr supervised "elimination diet" eating only boiled lamb and white rice for 6 weeks morning, noon and night. (easy to digest, I guess) Think Scotch Broth soup,,, not so bad. Then I introduced only ONE suspect- food per week. Through this, I was able to narrow down the food that REALLY brought on FibroFlares and was able to markedly lessen my pain, fatigue, IBS and irritable bladder symptoms. But,, it certainly didn't 'cure me'.
I think that the best thing Oprah could do for us would to do a interview with a renowned FM dr, such as Jon Russell through slideshows, discussion on the facts of FM and make available web-sites for further follow up by other Fibromites. Oprah should just leave her drs out of any FM show completely.
Seeings how it's mostly women who are affected by this insidious disease, she would be doing her female viewers a big favour providing current, correct and captivating information not only for us that suffer with FM, but for all the sisters, mothers, husbands, friends and family members who are better trying to understand the disease.
Divorce is so common in FibroFamilies and it's a direct result of not enough awareness of the disease. You can't fight what you can't understand, and I think that's why the spouses bail out.
I also saw her show on thyroid problems and I almost felt the medical clock go back by 50 years when 'her specialist' said it was from holding back words. Hogwash! I guess her dr would also believe that a visit to a barber-surgeon for a good blood-letting would improve all that ails us. What kind of archaic thinking is that! She's saying that thyroid problems are not validated AND that it's our own fault if we have them! grrr
So, if we pressured Ms. Oprah to use Dr Jon Russell, and other specialists in the field of FM/CFS/MPS, etc, it would make her show look so much more professional, and would hopefully
raise awareness of a disease that drastically effects millions of people in north america every day; as well companies, the economy, the health care system, as well as the families that watch her show.
I'd sign a suggestion- petition to get her to do a show like that. Otherwise, it really could do us more harm than good and put FM back in the dark ages rather than getting the correct messages out there to help her viewers.
Wishing you good health, good sleep, and good days, Sincerely, Joni
ps: I'm sorry I rambled on and on. I'm just very passionate for the FM cause, like the rest of you.
I did not see the show, but someone suggested I look into it. I have had my thyroid removed after 15 years of flipping back and forth from hyper to hypo to normal and back, with no one believing me. I have had IBS since I was 18 and I was diagnosed with FM when I was 50. I also have arthrytis every where, back problems, and seborhea (sp?). I am a very extroverted and out-spoken person, who rarely holds anything in. I have had problems with stress induced depression, that have caused my weight to drop 40 pounds in two months. I have tried all kinds of diets and have tried giving up caffeine and artificial sweeteners. I have had gastritis, cyst on my liver and a hernia. Through this all, I have managed to work full time, but it is hard as hell sometimes. I am a very positive person and generally happy and I am lucky to have a great family and fabulous hysband. I had 10 miscarriages and 2 blited ovums and could never carry full term. I was lucky enough to adopt my husband's daughter, when her birth mother passed away 10 years ago.
Just letting you know there are more people in the same boat, but I was lucky to find a doctor in Portsmouth, NH that specializes in FM and they do an all vitamin IV on Thursdays, that is called a Myers IV or Myers cocktail. You can Google it or I can get you the recipe. Not all insurance companies will cover it. Anthem did, but Medical Mutual would not when I lived in Ohio. It is good for FM, chronic fatigue and arthrytis. It seemed to help me cut down on the meds. His name is M. David Lauter and the tel. is: 603-433-7500.
Good luck and God bless!
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2012 Remedy Health Media, LLC. All Rights Reserved.
Hello Karen
For some strange reason, I cannot seem to get this crazy machine to follow the link provided in my e-mail or from my home page, so I can read your entire post. Can you please resend it to me if you have time.
Thank you
Betty