From Our Readers – Comments & Suggestions – 12-15-10

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Three Women Speak Candidly About Pelvic Pain

The season premier of MTV’s “True Life” series raised awareness about lesser known health conditions – interstitial cystitis (IC), vulvodynia, vaginismus and pelvic floor muscle dysfunction. The full video, which follows a woman who has IC for 12 weeks, is available for free online viewing (not for kids). Go to the Interstitial Cystitis website and click on the link to the video in the last line. – E


Fibromyalgia and Thyroid Disease Somehow Related?

Re: "Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?"

I have been running an FMS voluntary support service for 13 years and I have found that We need to: 1) have thyroid checked, and 2) check for underlying chronic infections. It is possible to reverse FMS if diagnosed early enough. – J

Duh. Some doctors have known this for years. Dr. John Lowe wrote 'The Metabolic Treatment of Fibromyalgia' on this subject and has been preaching it for years. Once I got proper treatment for my undiagnosed severe Hashimoto's, my FM symptoms got under control and I just have my other co-diseases to deal with most of the time. I can tell as soon as my thyroid gets out of balance though – the FM comes back with a vengeance. – E

This is one possibility. (In reponse to C, who posted: "I have both of these, however I developed FM 15 years before I was diagnosed with Hashimoto's. What does this mean in terms of this article?") I also have fibro, but my thyroid was sub-clinically low, meaning that I had all the symptoms of low thyroid, but my blood tests came back normal. A very smart nutritionist put me on a natural form of thyroid supplementation (Spectra) on a slow increase schedule. I immediately started to feel better, and today my fibro is mostly under control. So, since I don't have Hashimoto's, or any diagnosed thyroid problem, it is entirely possible that a low thyroid condition (with or without low blood tests) is definitely connected to fibro. Your thyroid could have been in distress 15 years ago, but the Hashimoto's might only have occurred more recently.- S


Xerox is Doing Something COOL for US Service Men and Women in Iraq

If you go to this web site ( you can pick out a thank you card and Xerox will print it and it will be sent to a soldier who is currently serving in Iraq. There are literally scores of beautiful, colorful cards to choose from, all designed by school kids across the US. You can't pick out who gets it, but it will go to a member of the armed services. How AMAZING it would be if we could get everyone we know to send one! It is FREE and it only takes a second. Wouldn't it be wonderful if the soldiers received a bunch of these? Whether you are for or against the war, our soldiers over there need to know we are behind them. (Passing it on.) – M


Still Dealing with "You Don't Look Sick"

A couple weeks ago I crawled out of bed to attend the last half of my son's hockey game…of course, hubby was sitting at the top row of bleachers. The railing went half way up and then there was nothing to hold on to for the last 1/4 of the steps! I thought I was going to fall backwards down the cement stairs, it was so scary swaying in space with nothing to hold onto.

As I got to the top, one of the moms said hello to me and she added that she waited for me to get to the top before she spoke… she recognized that I was having trouble and didn't actually feel the greatest. She didn't want to knock me down the stairs by talking to me. I can't tell you how refreshing it was to have someone actually be supportive and accepting of your illness rather than constantly acting suspicious that we are just faking….

When I get that "you look great" xxxx, and you think they are implying that you can't POSSIBLY be ill if you look good, I always say, “Yep! That is how it is! You don't look sick, even though you are in pain or have no energy. That is how fibro works. It is called an invisible illness.” And then I will point out how so many people are treated poorly by their families and friends because people don't believe they are ill, and it is very tragic that we/they have to go through that! And I will look them in the eye and ask, "Isn't that just awful?" – I  (From an ongoing Message Board discussion now spanning 2 years.)


"Paleolithic Diet" and Hunger

HealthCentral diabetes patient expert David Mendosa wrote this article "Another Nail in the Standard American Diet Coffin” to call attention to how US dietary recommendations of the late 20th century (e.g., heavy on the high-carb, high glycemic index cereals and grains food group) have contributed to epidemics of diabetes and heart problems (maybe Alzheimer’s). It links to a research article in Nutrition & Metabolism that found a Paleolithic or Cave Man Diet (lean meats, fish, fruit, vegetables, root vegetables, eggs, nuts – and beans, I think) satisfies appetites of people with cardiovascular disease better than the standard American diet.

David notes that the article applies to people with type 2 diabetes, since all the participants had it. He writes, “They found both a marked improvement in glucose tolerance and “lower dietary energy intake,” in other words fewer calories consumed, among the Paleolithic diet group. Their study concluded that the reason why people in that group ate less was because their food choices were more satiating.” – T


FDA, XMRV & Blood Safety – Making Headway!

[Ed. Update, Dec 15: The FDA Blood Products Advisory Panel voted 9 to 4 on Tues, Dec 14, to recommend that the FDA ask potential blood donors if they have a medical history of chronic fatigue syndrome, and if so, bar them from donating. The decision quickly garnered headlines, including a Dec 15 article in the Wall Street Journal by ME/CFS reporter Amy Docker Marcus. See "Advisory Panel Says Victims of Chronic Fatigue Syndrome Be Barred from Donating." Be sure to read the comments and add your own.]

Q: What Happened to Rivka’s ME/CFS Email Campaign Targeting FDA?

A: Late on December 8, patient activist 'Rivka' and colleagues launched a grassroots patient email campaign directed to members of the FDA’s Blood Products Advisory Committee, which would discuss XMRV and blood supply safety 7 days later, on Dec 14. But before midnight, they asked potential participants to scrap the project.

Here’s part of Rivka’s comment on the FDA campaign – speaking for herself only.

"In terms of this December 2010 FDA campaign targeting the Blood Working Group and Blood Products Advisory Committee, organized by Rivka and 3 other patients who wish to remain anonymous:

"What I can say about this, and why the FDA campaign was aborted 7 hours after it was started, is that we are still learning as we go with all this advocacy, including whom to target and what to ask for (what to demand). Because not all information is available to us patients, we make calculated decisions on the information that IS available to us. But there may be things we do not know. For example, we are still learning who is on our side and who is not (both individuals and groups).

"Just a few hours after publicizing the FDA campaign (making it public, starting it) I was asked by Dr. Judy Mikovits to stop it. (She has now agreed that I may state this publicly.) Seeking clarification, I was told that our campaign was not helpful (to put it gently) to the work they were feverishly pursuing. We patients who worked on this FDA campaign worked hard on it and had thought it could have a good impact. Believe me when I tell you, we did not want to abort the mission unless we had good reason. And being asked by Judy Mikovits, hero to many of us, to stop it seemed like a darn good reason……."

With great respect for the ME/CFS community,


Men with Fibromyalgia – Is It FM Pain or a Heart Attack?

Here's a letter I found on the Men with Fibromyalgia site []. It's titled "A letter from the Knights of Fibromyalgia", and it starts like this:

"Suddenly, in the middle of doing some small task, sharp shooting pains begin in your chest that start traveling down your arm and it is very hard to breathe. Your first thought is a heart attack. You go to the ER and they say you are fine, it is nothing. The next day or a week later it happens again. Again they say you are fine but this time they give you a referral to a psychiatrist…. What I have just described is a very common Fibromyalagia flare up." This is written by the moderator of the MenwithFibro Forums, and I thought other men might share his experiences as a man with FM pain. – J


Need Medical or Dental Care? Check HRSA

"The Health Resources and Services Administration (HRSA) ( is an agency within the U.S. Department of Health and Human Services. Tens of millions of Americans get affordable health care and other help through HRSA programs." You can search for the federally funded family health centers near you (by county or state) all marked out for you on a map, at  You pay what you can afford. – R


Sign Up Now for Winter Online ME/CFS/FM Coping & Support Course

Enrollment is now open for the Winter 2011 term of Dr. Bruce Campbell's online CFIDS & Fibromyalgia Self-Help Course. The term begins Jan 10, 2011, and registration closes Jan 3.

The course is a 6-week international e-mail discussion group that focuses on solutions – practical strategies for managing common problems of CFIDS and fibromyalgia. Course topics include managing symptoms, pacing, controlling stress, handling feelings, and improving relationships.

The cost of the course, which includes a copy of "The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia," is $30 plus shipping & handling. (Already have the book? Registration to take or re-take the class without buying the book, $20.) Visit our website to learn more and to register:

Bruce Campbell, Director
CFIDS & Fibromyalgia Self-Help Program


Recommends Cancer Information Site

I think the Cancer Information Network website ( is a good source of information and links to helpful resources, especially if you're new to cancer. It seems to up on new research. I note for what it's worth that all the advisors who review the information for inclusion are cancer radiologists.   – H

Note: This information has not been reviewed by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Comments & Suggestions – 12-15-10”

  1. cfrsmom says:

    This is the first time I have seen anything about this — but I have to say it is not just men. I am a woman and have had sharp shooting pains in my heart area also since I have had FM. I call them “shock-like” pains – it feels like someone is giving me little shocks inside my heart.

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