From Our Readers - Comments & Suggestions 04-13-11
April 13, 2011
Visit the Awareness Day (May 12) Facebook & Get In On the Fun
Not sure what to do for May 12 ME/CFS, FM & MCS Awareness Day? Every little bit helps, and the International Awareness Day Facebook page has lots of ideas. Whether you're able to get out and about or not, you still have time to get something going with folks in your area or online! - A
Parathyroid Problems Common in Those With Fibro
I am scheduled to have surgery for my parathyroid problem on April 12th. I think anyone with fibromyalgia should be tested for a parathyroid problem. Low vitamin D and high calcium levels are a sign of parathyroid problems. Also, getting the PTH test will also let you know if you might have it. Check out the website www.parathyroid.com for more information and the symptoms. - P
[Note: This seems to be an excellent site. As it explains, we have 4 tiny parathyroid glands behind the thyroid glands on either side of our gullet. They control the calcium (which has many intricate functions) in our blood & bones. When one of these swells & makes too much hormone it raises blood calcium too high & many symptoms can develop, including depression, weakness and muscle cramps.]
Weight Loss & Coconut Oil
I was at my doc’s this past week. I hadn't been there for 9 months but it was time to ‘check in’. I decided to let her weigh me. I usually say "no I don't want to be weighed"...but this time I went the whole nine yards. Well, lo and behold I was down 4 lbs since I last got on a scale. I don't have a scale at home so I don't weigh myself, but I know I'm up 20 lbs in the last 20 years.
I don't diet but I try to be careful of what I put in my mouth. But I like food and so far have a good appetite. Well, I've been taking
Coconut Oil softgels now for about 3 months and I believe this has been the reason for the weight loss. There is a lot online about Coconut Oil and Weight Loss and I knew that, but I'm taking it mostly for inflammation. There is a book that I haven't read yet but the title is: Eat Fat, Lose Fat. – T
[Note: For new science on the benefits of the special lipids in virgin coconut oil, see supplement reporter Karen Lee Richards’ recent report, “Coconut Oil – Healthy Gifts from the Tree of Life.”]
Getting the Word Out on an Overlooked Illness that Mimics FM & ME/CFS
Hi! I have fibro and the symptoms that are similar to CFS. I also have a rare disease called Dercum's Disease which also has many of the same symptoms but comes along with painful lumps and abnormal adipose deposits all over the body. Because it is rare and because doctors don't know about it, Durcum's is often not diagnosed and people continue to suffer. Many are mistakenly diagnosed.
I am a group leader of the mdjunction.com Dercum's Disease Support Group. One of the things we try to do is spread the word about Dercum's so that patients AND medical professionals are aware of it. It's quite frustrating when you know something is wrong but nobody believes you. So we're trying!
One good site with information is genome.gov (http://www.genome.gov/17516629). Our one doctor in the US who is actively involved in researching and diagnosing Dercum's is Dr. Karen Herbst. Her site is http://www.lipomadoc.org/dercums-disease.html.
If people want to ask questions about symptoms, treatments or anything else that has to do with Dercum's, I'd recommend a visit to our support group. We're 238 people strong now and can validate how people are feeling and help with finding a doctor. Our site is: http://www.mdjunction.com/dercums-disease Thank you for sharing this information!
- Dianne Muffett
Is There Some XMRV-Autism Link?
Age of Autism – a ‘Daily Web Newspaper for the Autism Community', published an article “The Potential Importance of the XMRV Retrovirus to Autism” by Kent Heckenlively. Apparently he has been active in the debate over whether vaccines could have some role in triggering autism, and he’s interested in XMRV findings that may signal an association with autism - and between ME/CFS and autism. Here’s a quote from this article: “An abstract presented at a meeting in 2010 from a small group of children with autism found that 82% of the children tested positive for the XMRV retrovirus. The scientists working on this research believe XMRV is stimulated by three things [inflammation, cortisol stress hormone, and sex hormones], and this is where it starts to become relevant to the autism community.” - O
Dr. Pellegrino's Fibromyalgia Diet Advice
Re: “Weight Gain: Why It’s a Problem with Fibromyalgia, and What to Do About It,” - Dr. Pellegrino’s advice on ‘good’ proteins, fats and carbs that will help overcome the four unique factors involved in FM weight gain.
The more research I am doing, the more I think my FM is a hormonal issue...adrenals, thyroid, insulin...I don't think a low-fat diet is a good idea at all. Protein? YES. Fat? YES! Aside from the nutrients fat contains, it also gives a satiated feeling that skinless chicken just doesn't do! I avoid transfats and poly unsaturates like the plague, but other than that... Skipping egg yolks? What about the choline? And the flavour? Cholesterol is necessary for hormones, too. My HDL ['good' cholesterol] is very high. If FM is hormonal then I want to have the fuel I need to keep things going! I am trying to find the balance. - U
Opioid Plus Antagonist (Ultra Low Dose Naltrexone) for Pain?
Re: “Is Buprenorphine Effective for Chronic Pain?”
Dr. Dmitry Arbuck, a pain management expert at MeridianHealthgroup.com, write this article for PainTopics.com. He says, “There is mounting evidence that ultra-low doses of opioid antagonists - specifically naloxone or naltrexone - may augment the analgesic properties of opioids, including buprenorphine.” - C
Arthritis Today Online Drug Guide
The Arthritis Today website has a drug guide where you can look up detailed charts on side effects, dosages, indications, and more. There's information about different types of arthritis & pain drugs, and drug news. (www.arthritistoday.org/treatments/drug-guide/index.php)
- Arthritis Foundation
Video by NFA Founder Explaining Struggles & Reorganization
Lynne Matallana explains how recession, her auto accident, and issues with the pharmaceutical industry led to a drain on funding for the 14-year-old National Fibromyalgia Association. As of June 1 she will step down as president and start a new marketing company, Cause Marketing, which will encourage and publicize corporate support for nonprofit organizations. See video HERE.
Many with Fibromyalgia Have Celiac Disease
Re: "My Long Road to a Diagnosis of Celiac Disease," by Julie Wendell
Julie and ProHealth: Thank you for sharing. I run a nonprofit organization for people with fibromyalgia/CFS/ME and we are seeing more and more people who have these illnesses AND celiac disease. Keep up the good work!
- Yvonne Keeny, founder & executive director, Fibromyalgia Coalition International
[Note: Fibromyalgia Coalition International is hosting its annual FM & ME/CFS patient conference next month and there's still time to reserve a place for you and your friends. The theme: Suffer in Silence No More. "Fibromyalgia and Chronic Fatigue Syndrome sufferers and those who care for them will be gathering from all over the nation to share the latest holistic research & therapy insights in this special 2-day conference - Friday & Saturday, May 13 and 14 in Overland Park, Kansas.' To read about this nonprofit organization, the conference, and the expert presentations that are scheduled, go to www.fibrocoalition.org/pages/conference.html. Topics include blended naturopathic/conventional medicine; the roles of chemicals and diet in inflammation & body pain; effectiveness of various physical therapies; dealing with "The Forgotten Hormones," and more.]
New Cat Allergy Vaccine Looking Good
Re: "'Peptide' Cat Allergy Vaccine Works: Mold, Mite, Pollen & Dust the Next to Fall?"
If this works - and it looks as though the facts are in except for the trial to figure out optimal doses - for the first time in my life I may be able to have a cat, and visit the homes of friends with cats! It's really weird, but I've found many people refuse to believe someone is REALLY allergic to cats. (Or feather pillows, in my case.) - M
Summer FM & CFS Self-Help Discussion Group - Sign Up Now
It’s sign-up time and there’s a special low rate for the Summer, 2011 Introductory Self-Help Course at Bruce Campbell's nonprofit CFIDS & FM Self-Help website. This is a wonderful email listserv discussion group where you get a self-management lesson every week, and discuss issues with other members and a patient moderator. There is also a free open-ended discussion group for graduates of the introductory group (with many loyal fans), and a free Self-Study Course for developing an individualized treatment plan, so be sure to check it all out here (www.cfidsselfhelp.org/online-courses).
Note: This information has not been reviewed by the FDA. It is generic 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 with your professional healthcare team.
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