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FMS eNews 05/09/15

This week I have downloaded and am attempting to use Windows 10.  It is quite a bit different from Windows 8 and 8.1.  Another learning curve!
 

Today is the beginning of FM Awareness Week.  There hasn't been as much preparatory activity as there was for May 12th but I hope you are doing your bit to raise awareness, wherever you are.

It looks like someone has already done the research I suggested last week. See "23andMe" below.  As you will also see LDN is the most popular treatment for fibro. Read Melissa's story too.

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WORDz for the WEEK

236.  Life consists not in holding good cards, but playing those you hold well.

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What Patients Say Works for Fibromyalgia
In a surprising finding, patients who live with the painful disorder fibromyalgia have reported that commonly prescribed drugs for this condition actually make their symptoms worse. This is according to a new study by CureTogether, a free resource owned by 23andMe that allows people to share information about their health and treatments.
People in the study said they found that lifestyle changes like rest, heat, and various ways of reducing stress offered the most effective relief. In addition many of those surveyed said that the drug Naltrexone at a low dose worked well. Conversely, well-known fibromyalgia drugs such as Lyrica, Savella, Cymbalta, and Effexor, were reported to worsen rather than improve patients’ symptoms, according to the study.
Read more

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Taking Better Care of Yourself

When you've got these illnesses, good self-care is essential. It can be hard, especially on our worst days, but if we slack too much, we only give ourselves more baddays, right? Below, you can get a look at a few things it's important to keep up on, even when you spend the whole day in bed.
Also this week, we'll look at self-efficacy as a coping skill as well as some other ways you can do the things your body needs ... or just wants.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert

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Link Between Muscle Spasms and Fibromyalgia - Top 4 Effective Treatments

 Most of us have problems with muscle spasms and pain every now and then, but people with fibromyalgia syndrome often make a complaint of this frustrating happening as an on-going trouble. The muscle spasms can surprisingly appear and vanish whenever they want and take place in any muscle tissue, but most often they appear in the legs and back.
Continue Reading

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15 Mental Tricks That Fight Pain
People who suffer from temporary or chronic pain can utilize mental techniques to mollify some of their agonizing symptoms. In scientific studies, patients who suffered from severe injuries mentally envisioned increased blood flow to the site of injury, and ended up expediting the healing process. This is a prime example of what the human body is truly capable of.
Continue Reading

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6 Foods That Fight Pain

There are a number of reasons to avoid taking aspirin or ibuprofen often. You may be seeking alternatives because you experience pain but like to stay away from conventional medicines. Alternatively, you could be someone who just learned about the potential dangers that come with taking Aspirin and ibuprofen regularly and are ready for something different. Ibuprofen and Aspirin have been linked to anemia, DNA damage, heart disease, hearing loss, hypertension, miscarriage and even influenza mortality (these are just 7 of the over 24 adverse health effects its been connected with.) . . . . .
. . . . Since nature already provides us with what we need to deal with ailments we might have, why not try them? They may work better for you versus the synthetic
options!
     1. White willow bark:
     2. Capsaicin:
     3. Boswellia:
     4. Cat’s claw:
     5. Omega-3 fatty acids:
     6. Curcumin:
Read all about them.

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This week’s fibromyalgia and ME/CFS news (week of August 31, 2015)

 More bad news for patients who are suing drug-maker Eli Lilly and Co. over Cymbalta’s withdrawal symptoms: “A Virginia federal judge on Friday, [August 28], found that two women suing Eli Lilly and Co. for allegedly misrepresenting the withdrawal risks of its antidepressant drug Cymbalta had failed to present enough jury evidence to support their fraud claims…,” according to Law360. Unfortunately, Law360 requires a paid subscription to read the rest of the article. (Sorry, I wasn’t able to find a comparable story on free media.)
Canadian man arrested after stealing 6-year-old’s birthday card and money. His excuse? He was suffering from Cymbalta’s withdrawal symptoms. (No, I’m not joking.)
Also#;-  Research news … Interviews … Personal stories … Recovery … From the blogosphere … Advocacy … In case you missed it… Off topic … Top stories …

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PDF Version of the mag

 Beth asks specifically that you read her editorial on page 5.

September brings us Invisible Awareness Week. 
As promised last month, we are focusing in on Awareness throughout this issue.  Not only what is being planned but also what has already been achieved by so many individuals and groups since our May events. 
We all started our journey thinking we were alone but from joining online support groups have discovered there are so many more people who also face this debilitating and life changing condition.
Read more

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Monday Mindfulness – Week 6

Continuing to be mindful with Ian Peric of Priceless Vitality.


See you next week.

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Cellular Havoc: Zeroing In On The Sleep Problems in Fibromyalgia?

You know you’re in for a different type of study when the lead author hails from the Department of Mathematics and Statistics at his University. This isn’t your usual kind of biology. No human subjects immediately needed – just studies and studies and computations and computational. It’s called computational biology and if, Gordon Brokerick and Travis Craddock at at Dr. Klimas’s Institute of Neuroimmune Medicine are correct, it’s going to revolutionize our understanding of the human body.
This is the first time, that I am aware of these techniques have been used in fibromyalgia.  They picked a good symptom to try them out in – sleep. Numerous studies have shown that depriving a person of good, deep sleep doesn’t just make them tired – it ramps up their sensitivity to pain as well.

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How To Get A Drug Trial Funded for Chronic Fatigue Syndrome


We in the U.S. looked on in dismay as Norway ponied up some major krone (Norwegian dollars) for a large Rituximab ME/CFS trial while the mighty U.S. medical establishment sat on its hands. It wasn’t just weird – it was embarrassing.  Here was a potential breakthrough in a disease that everyone in the federal establishment said is a priority for them – yet not a finger was moved. When even Simon Wessely asserted that Rituximab should get a trial – and the U.S. still stayed mute –  something seemed very wrong.
In retrospect the reason seemed clear: the federal government doesn’t do drug trials – they are the purview of the pharmaceutical companies. In the U.S. the marketplace rules. If you can get a drug company to pay for a drug trial you have a shot. If you can’t get a drug company to do that you’re out of luck…
That sounded right ( it made me feel a bit better  but in fact it was completely wrong. The National Institutes of Health (NIH) does fund drug trials and it’s doesn’t just fund a few of them – it funds lots of them.
In retrospect that only makes sense. Why would the biggest medical research funder in the world leave the fruits of its labors – treatments – entirely in the hands of drug companies? Why would it leave the marketplace entirely in charge of such a vital factor? It wouldn’t and it doesn’t. The National Institutes of Health spends a nice chunk of change on drug trials every year.

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The Ron Davis/OMF Severely Ill ME/CFS Project Is On!


A bright, bright light is about to shine on the most severely ill among us. The first part of the ME/CFS Severely Ill Big Data Study has been fully funded. It didn’t take long. The Davis’s kicked off a funding drive for the Severely Ill project about a month ago at their home. A couple of days later they received a $500,000 donation in the mail. (Imagine opening THAT letter….How does a $500,000 donation come? In the form of $500,000 check.). The Open Medicine Foundation just announced that that plus other donations plus a check for $350,000 dollars gave a green light to the ambitious, million dollar project.
The project will undertake an exhaustive search for molecular biomarkers in home and/or bedbound patients with ME/CFS.  Each patient will receive approximately $25,000 worth of tests. By the time this study is done it’s likely that no patients in any other disease will have received the amount of study these patients will have.
I asked Stanford’s top immunologist, Mark Davis, about  this big search  effort for biomarkers. He said that the NIH – a hypothesis driven institution – doesn’t get the idea of a big open-ended search effort like this, but that he thought this was the way to go in an under-researched field like ME/CFS.

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Diet & nutrition for optimal health
If you are looking for dietary advice for supporting general health and how you can use foods to help prevent chronic inflammation and long-term illness, then you’ve come to the right place. If you have an existing health condition and would like to know more about nutritional support for this, more specific advice can be found on our health pages.
A diet that promotes health and prevents inflammation is one that contains an abundance of natural, unprocessed, seasonal, organic, whole plant foods; a broad range of wild, grassfed or pastured organic animal proteins; plus an array of ‘good’ fats.

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Tattoo with a hidden message highlights the invisible battle faced by people with depression


A young woman has brought attention to the invisibility of depression - by getting a tattoo which sends out two opposing messages depending on how you look at it.
The tattoo on her leg appears to say "I'm fine" when read by someone looking at her, but reveals its true secret to its wearer when she looks down at it, reading "Save me" instead.
Bekah Miles, a 21-year-old US student who has struggled with depression for some years, got the inking on her leg to start a conversation about mental health and give voice to her experience.
She said in a Facebook post which has been shared more than 200,000 times that the topic was very difficult to talk about.
"So today, I got this tattoo. I feel that my leg was the best place for the meaning behind it. When everyone else sees it, they see 'I’m fine', but from my viewpoint, it reads 'save me’.

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An LDN User Story: Mellisa Miller Shares Her Experience Using LDN for Fibromyalgia


Mellisa Miller, who lives in Kentucky, USA, offered to share her story about her experience using LDN as a treatment for her fibromyalgia:
I became a nurse (LPN) in 1991 and I loved every minute of it. In 2002, while working as a dialysis nurse, I began having bilateral elbow pain and stiffness. I thought it was from the work I was doing at the time: lifting and transferring our patients, lifting and carrying supplies. I thought that I had just over-extended my arms/elbows. Then, before I knew it, I had pain and stiffness in just about every joint, also fatigue that was worsening each day. This had a major effect on me, my family, and my career. My husband was an active duty army helicopter pilot at the time, we were raising two daughters and I was working as a dialysis nurse. I cut my hours back at work, but that didn't help, so I tried working at another nursing job. Things seemed to get worse with that-- more pain and more fatigue. I was diagnosed with severe fibromyalgia in 2004 by the third rheumatologist I had seen within two years. . . . . . . . .
. . . . . I would love for every fibromyalgia sufferer and chronic pain sufferer out there to know the facts about low dose naltrexone and the possibilities it has for chronic pain relief. I cannot tell you how much this one medication has made a difference in my pain relief and my LIFE. I want to spread the word about LDN so that those who don’t know about it will learn from my experience. Believe me, it is so worth taking a chance! Read more.

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Protect Yourself from Acetaminophen Liver Damage - by Suzy Cohen on August 29, 2015

Known generically as “acetaminophen” or “paracetamol,” this is one of the leading pain relievers in the entire world. It’s probably in every medicine cabinet (including mine), right next to my ibuprofen.
Most people know ibuprofen can hurt the gut, whereas acetaminophen impacts the liver. Today I want to focus on protecting you if you like to take acetaminophen. There are ways to prevent liver damage. Many years ago, probably in 2001, I warned you all to take a certain supplement called “NAC” if you needed to take acetaminophen routinely, in order to protect your liver and restore glutathione levels. Glutathione is an antioxidant that has anti-cancer activity.  I was right about NAC, and today, 14 years later, conventional physicians are starting to recommend NAC too. . . . .

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I must leave you now - until next week -

My fondest wishes to you all

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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