Nevertheless, all may not be as it seems according to Donna. See Fed Up with Fatigue, below.
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241. Life isn't a game; it doesn't have a restart button.
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Yoga for ME/CFS: What We Know
Any form of exercise is tough when you have ME/CFS, and yoga is no exception -- or is it? See how one research team designed a regimen that just might accommodate all of the relevant symptoms, including post-exertional malaise, and who the routine is aimed at. That's below.Also this week, we go in-depth with post-exertional malaise. Plus, I did a lot of work to make the Guided Tours on my site more up-to-date and easy to navigate, so I hope you'll take a few minutes to look around and see what's there. Then, just for fun, I threw in something about Halloween down at the bottom.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia; Chronic Fatigue Expert
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Advancing Research-Myalgic Encephalomyelitis; Fibromyalgia
Advancing Research in Canada for Myalgic Encephalomyelitis and Fibromyalgia
The NATIONAL ME/FM ACTION NETWORK is a Canadian charitable organization dedicated to Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM) through support, advocacy, education and research.
The 2010 Canadian Community Health Survey (CCHS) conducted by Statistics Canada revealed that there were 411,500 Canadians diagnoses with ME and 439,000 with Fibromyalgia. The survey also revealed a high level of disability for patients with ME and FM as well as unmet health care needs. ME and FM are chronic and severely disabling illnesses. Although they are virtually unknown to the general public, they are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities. These illnesses are real; the people are real; and they need help NOW!
(You can vote every day until your allocation runs out!)
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Fibromyalgia: it sure loves women!
Much as science likes to pin things down to a single explanation, there are a number of factors that increase the chances of fibromyalgia occurring in women rather than men.
Firstly, the rate of diagnosis is likely to be higher in those who actually go to the doctor. Since the average length of time it takes to arrive at a diagnosis of fibromyalgia is around 5 years (GPs try to eliminate all sorts of rheumatic and neurological complaints to begin with), those who visit the least frequently (men) are unlikely to see this sort of lengthy process to a conclusion.
Secondly, the most common age range for fibromyalgia diagnoses are 35-45 years old. Women may attend surgeries regularly on account of children, breast screening and parents. Again, they are engaging the health service. Men are not regular attendees at this age. . . . .
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7 October 2015 newsletter - All Lifetime DLA Claimants Can Now Be Forced Onto PIP As Roll-Out Goes Nationwide
In this edition we learn that all working age DLA claimants with lifetime awards can now be forced to apply for PIP; warn of possible plans to merge PIP with ESA and wonder whether more ESA claimants are to be called for reassessments, as Maximus offer £84,000 salaries to new assessors.
We also report on the disability charity working with Maximus and discover how the DWP are desperately trying to cover up the deaths of vulnerable ESA claimants.
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Low Dose Naltrexone (LDN)
Consultations with our medical team are available at our clinic or over the phone. Please do not hesitate to contact the clinic if you have any queries.
Clinic 158's letter to patients
Clinic 158's Consent Form
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Why the “new” ICD10 fibromyalgia diagnosis code doesn’t really matter
I’ve debated whether or not to write this post because doing so makes me feel like a killjoy. Good news is rare in the fibromyalgia community, and last week many people were overjoyed when they heard that fibromyalgia was listed as a diagnosis in the newly adopted (at least in the U.S.) ICD10 medical coding system. This story http://nationalpainreport.com/the-health-care-industry-finally-recognizes-fibromyalgia-8827637.html from NationalPainReport.com made the rounds on the Internet,with many U.S. readers proclaiming “It’s about time!” and those in other countries left wondering, “When will fibromyalgia be recognized as a real disease in MY country?”Let me start by saying, I love NationalPainReport.com. I frequently post links to their stories in my weekly news roundups. They do excellent reporting on chronic pain issues. But I think they hyped the importance of the “new” ICD10 fibromyalgia code more than it deserves – especially when the author wrote that the code means “fibromyalgia will finally be recognized as an official diagnosis.”. . . . . .
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This week’s fibromyalgia and ME/CFS news (week of Oct. 5, 2015)
Top news …
- Judge orders Hobby Lobby to stop discriminating against transgender employee with fibromyalgia. The craft store chain refused to let a longtime employee use the women’s restroom after she transitioned.
- The crackdown continues: Over-the-counter codeine-based pain relievers may soon require a prescription in Australia.
- Free event! The (U.S.) Centers for Disease Control; Prevention has invited Dr. Charles Lapp from the Hunter-Hopkins Center and Dr. Bruce Campbell, founder of the CFIDS; Fibromyalgia Self-Help Program, to discuss “Managing ME/CFS/SEID: Learning to Pace” during a one-hour conference call on Thursday, Oct. 8, at 4 p.m. ET. Click here for call-in details.
- Utah State University student wins third place in national slam poetry competition for her poem, “Take Cymbalta.” Here’s a YouTube video of winner Jordon Roberts performing her poem. Enjoy!
- Stanford University ME/CFS researcher and his severely-ill son are featured in the Washington Post: “With His Son Terribly Ill, a Top Scientist takes on Chronic Fatigue Syndrome.”
- The Solve ME/CFS Initiative wants to share the stories of ME/CFS sufferers as part of its new “Humans of ME/CFS” campaign. Click here for submission details.
- The cost of fibromyalgia drug Lyrica has increased 51 percent over the past three years, reports BloombergBusiness.com. And FiercePharma.com reveals how “Drug Price Hikes [are] a Tried-and-True Strategy for Who’s Who of Big Pharma.”
- Pain News Network columnist Emily Ullrich discusses how the risks of taking non-opioid medications, like Lyrica and Neurontin, are often minimized by doctors and others.
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Monday Mindfulness – Week 11
Continuing to be mindful with Ian Peric of Priceless Vitality.
See you next week.
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Beat Back The Pain With A Diet Elimination Challenge
What is a diet elimination challenge?
A diet elimination challenges requires the individual to cut certain foods from their normal intake for a week or two. Then, the individual starts to reintegrate those foods, one-by-one, into their diet. This happens over a period of three weeks. During this time, it is important to keep a food journal handy to record any noticeable changes in your body.
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Fibromyalgia Myths and The Facts to Debunk Them
1. Fibromyalgia is a fake condition that doesn’t really exist.
This is a common notion that stems from the historical roots of fibromyalgia. Many individuals were originally told that their pain was “in their head.” It wasn’t until the late 1980’s that the term fibromyalgia was coined. In 1990, the American College of Rheumatology developed a research model for Fibromyalgia that used the term to describe pain in the soft muscle tissue. Even today, people are told that much of the pain from fibromyalgia is “mental” however, the condition has come a long way in the sense that it is officially recognized as a chronic disease.
Fibromyalgia is included in the World Health Organization Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems published in 1992.
The truth is that fibromyalgia has existed ever since man has been walking upright. As long as there are faulty foot bio-mechanics, resulting from people’s genetics or lifestyle, there will always be a susceptibility to fibromyalgia.
2. Fibromyalgia patients can’t have a normal relationship.
3. Fibromyalgia patients should not have sex.
4. Fibromyalgia patients (don't?)need to be very careful about their diet.
5. Fibromyalgia patients fake their pain.
6. Fibromyalgia can cause Lupus.
7. Don’t exercise if you have fibromyalgia
8. Fibromyalgia can be fatal.
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The Latest Fibromyalgia Research…And Why It’s Important
The latest research on Fibromyalgia has yielded some surprising and unexpected results, primarily dealing with abnormalities in the nervous system. It has been found that people with fibromyalgia have peripheral neuropathy, and this seems to support that fibromyalgia is a neuropathic pain disease.
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Cupping Therapy for Fibromyalgia
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Can Aromatherapy Help Treat Fibromyalgia?
Aromatherapy is a type of therapy that has been tested and tried many a time. There are so many things that scents can do to the mind, it’s no wonder that it’s become a popular type of "aromatherapy"
Continue reading
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Effects of Hydrotherapy on Fibromyalgia
Over the years, many fibromyalgia sufferers have started to utilize a variety of different techniques in order to try and deal with their pain.
Continue reading
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Blood Volume in ME/CFS by Dr. David Bell
In this slide, imagine three buckets and in each is all the blood of three different persons. The first is a healthy person with roughly five quarts of blood divided into two portions, the red blood cells which carry oxygen and the plasma. The second is a person with anemia. In this person the total volume of blood is normal, but the proportion is not. In anemia, the red cells are reduced compared to normal, and this reduction causes fatigue. In the third bucket, a person with ME has low blood volume, but the proportion of red blood cells and plasma is normal. The accumulated volume, instead of being five quarts is down to three or four quarts.
In the first study of blood volume in ME, eighty percent of ME patients were abnormal compared to historical controls1. This was subsequently confirmed by a study out of Miami2. In addition, the volume has been studied in POTS which can co-exist with ME in up to 40%3. And the blood volume can be strikingly low.
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Can’t Sleep All the Way Through the Night? Try a Little Bit of This “Ideal Liver Fuel” Before Bed
A spoonful of raw honey has a “dual action” for sleep:
1) restoring glycogen to the liver so that your brain doesn’t activate a stress response, which often occurs when glycogen is low (this could potentially pull you out of sleep.
2) Honey also assists with the release of melatonin – a hormone produced by the body that naturally helps with sleep.
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International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10)-WHO Version for ;2016
Scroll down the list to find Fibromyalgia entry - M79-7
Please note that this is International - World Health Organisation, not just USA.
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LDN Petition to the European Parliament
We petition the European Parliament to make funds available for trials and research for LDN to achieve a licence and public availability.
We petition the European Parliament to make funding available, either directly through taxes or indirectly by directing research bodies to provide funding, to undergo trials for the generic drug, Low Dose Naltrexone (LDN). Primarily this is to be done for Cancer since there lies the biggest savings of life and economy, but then also for the many other diseases, such as MS, Crohns disease, Fibromyalgia, Rheumatoid Arthritis, and many more.
(LDN has been established as the most effetive drug for treating fibromyalgia. It should be available on prescription. Please sign this petition NOW!)
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Are You Eating Enough Vitamin D Foods?
It’s no surprise to most people that getting enough vitamin D in your diet is not going to happen if you already have a deficiency. With a deficiency, you’ll need a minimum of 5000 IU of vitamin D3 taken daily for six months.
Let’s explore the facts about how much you’ll have to eat of foods that contain appreciable amounts of vitamin D to reach the 5000 IU minimum if you’re deficient.
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Arrival time is 9.30am, The Workshop will run from 10am-1pm
South East Cancer Help Centre ( www.sechc.org.uk ) , 2 Purley Road (near Tescos), Purley CR8 2HA
Details in a Word document
Caroline is offering this workshop to FM patients for £10 instead of £25. So, a bargain if you are within reach of Purley.
Contact Caroline for more information or to make a Workshop Booking
Please email caroline.hinkes@btinternet.com with ‘sleep workshop booking’ in the subject box, or visit her website www.sleepeasyworkshops.co.uk
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LDN and M79-7 seem to have featured widely this week. But we need to be informed about these.
I hope things are going well with you
Till next week . . . .
Stella
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Contact: fmsstella@gmail.com
or leave your comments below under Post a Comment
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N.B. The links on this my FMS eNews blog are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in PURPLE like the dividers. This blog gives just a taster of each article which can be viewed in full through its link. If you have any navigation problems, let me know.
I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources. Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. Sites I refer you to are for information only. They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will. Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.
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