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FMS eNews 14/05/2016

May 12th came and went.  There was a lot of purple circulating on the internet and countless graphics celebrating the day.  Here is a small selection.  We'll now have to start thinking about what to do to mark Fibromyalgia Week in September.  Put your thinking caps on!
  I hope the world is wiser.
Public buildings throughout the country were lit up but I haven't had time to copy those photos - maybe next week?

WORDz for the WEEK

272.  It is good to be deep, but it is deeper to be good.

Free Self-Management Toolkit Workshop for People with Fibromyalgia ME/CFS

Dates:- Wednesday 22nd June 2016 and Wednesday 10th August 2016 in Bristol
Places are limited
See poster for full details

Doctor with Fibromyalgia Wishes People Understood by Purple Law Lady  

Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself.
This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women.
Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors:
1 .  Fibromyalgia is real and can be treated—but it requires a holistic approach.
2.  It’s no longer a complete mystery.
3.  Fibromyalgia is primarily a sleep disorder.
4.  Most doctors don’t know much about fibromyalgia—and it’s not their fault.
5.  There is no cure for fibromyalgia, but there are effective treatments.
Read all the explanations . . .

Fibromyalgia News Today Weekly Digest

See below for a brief overview of last week's articles. Click through to read each piece in its entirety:
See News Today here . . .

Actipatch Therapy Shows Potential in Chronic Pain Relief

The chronic pain therapy ActiPatch, developed by BioElectronics Corp., has reached positive results in a seven-day trial evaluating its efficacy in chronic pain management. Results from the trial of the pulsed shortwave device have been released in a report entitled “A UK registry study of the effectiveness of a new over-the-counter chronic pain therapy,” published in Pain Management.
Management of chronic musculoskeletal pain often requires pharmacologic and nonpharmacologic therapies that have been shown to be ineffective, poorly tolerated, or inadequate in many individuals. Common causes for chronic pain include rheumatoid arthritis, osteoarthritis, injuries, and fibromyalgia.

Celebrating Awareness - International Awareness Day 2016

"Discovering Hope", Pace-gate (the end of CBT/GET... or not?), Do You Remember You?, the #MIssing Millions, the Long Journey - check out blogs, events, a free book and the most impactful video's ever in a celebration of International Awareness Day.

Sex, Guts and Complex Diseases: The Fibromyalgia Summit Day One - Becky-Mauldin-N.D.

The Fibromyalgia Summit has begun! On the busy first day of the Summit, learn how to methodically attack complex diseases, rebalance the gut,how sex can help, how low carb diets can benefit the brain, a Buddhist approach to pain, and more

Are You 'Activated'? Mast Cell Activation Syndrome - A Review

Mast Cell Activation Syndrome is new to the medical profession - much newer than ME/CFS or FM. Diagnostic criteria were only proposed about five years ago and because most doctors don't know about it, it's rarely diagnosed.
But it can cause all the symptoms in the book and its proponents think it's much, much commoner than thought. It's also often associated with POTS, Elhers Danlos Syndrome, Lyme Disease and ME/CFS/FM. Dr. Klimas has called it one the most interesting immune diseases going.
Find out about the basics of this curious disease in Remy's review of Dr. Afrin's new book on it

How to use Medical Marijuana Without Getting High

Surveys suggest that medical marijuana presents an opportunity to do some much needed good for people with ME/CFS/FM. Used correctly it can relieve pain, provide much needed relaxation, and enhance sleep. Used incorrectly it make you sick or leave you flying like a kite.
Donna Gregory Burch tackles how to use this controversial product safely in ME/CFS and FM . . .

Did the "Keep Psychiatry Out of the NIH Study on ME/CFS" Help for Hurt?

The Keep Psychiatry out of the NIH Clinical Center study petition has been signed by over 2,000 people and , on the face of it, it makes sense. Who would want psychiatry in one of the most important studies ever done on ME/CFS? I certainly wouldn't.
But did it help or hurt?
Find out more . . .

Wine Substance Beats Lyrica in Fibromyalgia Study

Lyrica was tested in mice models before it was tested in humans. Recently a substance found in wine called resveratrol took on Lyrica in a fibromyalgia mouse model test and guess what - resveratrol appeared to be more effective at reducing neuroinflammation than Lyrica.
Find out more . . . 

New Hemispherx Prez Says Getting Ampligen Approval Top Priority

After the FDA nixed its approval for Ampligen and saddled its producer, Hemispherx Biopharma, with paying for a large new trial, it looked like Ampligen was dead and gone.
Francis Collin's promise to increase ME/CFS funding, however, caused a seismic shift in the drugs outlook. Hemispherx Biopharma's board quickly fired its controversial, longtime CEO, William Carter, and appointed Thomas Equels to the post.
In an interview Equels said he had one and only one priority: get FDA approval for Ampligen.
Find out more in a Simmaron Research Foundation sponsored post . . .

Can Simple Blood Tests Help to Identify Chronic Fatigue Syndrome (ME/CFS)?

Six months after an adolescent comes down with infectious mononucleosis/glandular fever.she's still exhausted - and her doctor is about to tell her she's depressed and send her to a psychiatrist.
But what if a very simple blood test - one that the doctor used all the time - could tell the doctor that she actually had ME/CFS? How much easier would that make things for everyone...
That's what a team of researchers tried to find as they followed 300 people with infectious mononucleosis.
Find out what happened . . .

Dealing With Fibromyalgia Rash

Often when we think about fibromyalgia, we think of muscle pain, fatigue, sleep problems, digestive complaints and mood issues. However, many fibromyalgia sufferers also deal with rashes and other skin changes, which can be distressing and uncomfortable.
Fibromyalgia and Skin Problems
As many as 50 – 80 percent of individuals diagnosed with fibromyalgia will develop skin problems, including rashes. These rashes can make you feel uncomfortable wearing clothes, sleeping at night, or feel unattractive.
Read more . . .

FMS or Polymyalgia Rheumatica? - By Adrienne Dellwo

Do you have more inflammation than seems right for fibromyalgia? Pain in your neck, shoulders and hips that doesn't respond to your FMS treatment? You might want to learn more about a condition called polymyalgia rheumatica. See why your doctor may not think of it, even if you have the symptoms. That's below.
Also this week, how to tell IBS symptoms from those of your other condition(s), finding the right shoes for sensitive feet, and how to deal with it when you get diagnosis after diagnosis.
Take care of yourself!

Fibromyalgia & Polymyalgia Rheumatica: Know the Difference - Similar, but Not the Same

Irritable Bowel Syndrome in Fibromyalgia & ME/CFS - Why Do They Go Together?

Finding Footware with Fibromyalgia - Taking Care of Your Sensitive Feet

Piling On Diagnoses with Fibromyalgia & Chronic Fatigue Syndrome - They Tend to Keep Coming

Why Isn't Fibromyalgia Considered an Autoimmune Disease? - "Autoimmunity" is Often Misunderstood


This section is included because it provides general health education, but not necessarily fibro related.

This week I have been very impressed with the Invictus Games and the brave, injured and sick Servicemen and women. who participated.   What a spirit of perseverance despite pain, of victory over adversity, of elation after injury. Not only the athletes but the choir, nurtured by Gareth Malone, who sang so movingly the song they themselves had created relating their journeys from despair to hope.  I salute them all, especially Prince Harry who made it all possible.  Some had PTSD but I don't think any of them could have had fibromyalgia!, except Morgan Freeman, the actor, who gave an introductory speech.  Although it wasn't mentioned, he is known to have fibromyalgia.  I wonder if that was the reason he was chosen to participate?
Well wishes

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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 GREEN like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  The sites included are in alphabetical order.  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 judgments, 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 any way 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 although I do work in conjunction with other bloggers and Facebook groups.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to and you will be added to the emailing list.

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