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FMS eNews 09/04/2016

Thank you to those of you who have 'Liked' our new Facebook page.  There is now a link to it in the right column of this page.  On the Facebook page the  'Call to action' button is currently set to Send Email, for those who wish to contact me privately and/or wish to subscribe to this blog.  

Next week I shall have my second daughter staying with me.  I don't see her very often as she lives in Somerset, so I will be spending time with her and the blog will not get its usual attention.  So apologies in advance if it turns out to be  somewhat sparse.  Daughter number one lives in the same house as me, and she is my carer.  She will be on holiday next week.

As usual items are in alphabetical order of website titles.

WORDz for the WEEK

267.  In this world everything changes except good deeds and bad deeds; these follow you as the shadow follows the body.


Two Illnesses, Among Many

If you have fibromyalgia or chronic fatigue syndrome and nothing else, you're a lucky minority. The reality is that most of us have multiple chronic conditions that complicate our lives, our treatment, and our doctors' ability to diagnose us.
This week, we'll look at some of the conditions that are common in us and can often go undiagnosed, but first, the umbrella term that's being applied to us more and more and what other conditions it covers.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
Read Adrienne's articles . . .

How Much Water Do You Need to Drink Every Day?

Your body contains more water than anything else -- about 60 percent of your total body weight. Water helps regulate your body temperature, transports nutrients and helps remove waste. Every day you lose water when you breathe, sweat, urinate and defecate, and that water needs to be replenished. 
The big question is how much water do you need to drink every day? Although that's a simple question, it doesn't have an easy answer.
It depends on some environmental and physical factors that can change every day (flip through the slideshow for signs you need to drink more water). Also, it's not just the water your drink -- about 20 percent of your water intake comes from the foods you eat. The remaining 80 percent comes from beverages including water, coffee, tea, milk and anything liquid.
Find out more . . .


Healer vs. Doctor ~ 3 Key Traits To Look For When Searching For A Physician Worthy Of ‘You’ ~

Every healer is a doctor, not every doctor is a healer.  At least not as far as physicians go.  They may not be easy to find, but they are out there.  Your health and peace of mind are too important to have to settle for anything less.
As I have mentioned before, I have a wonderful physician.  This week I paid a visit to him at his home that also doubles as his office.  These visits always leave me feeling heard, encouraged, and most importantly, hopeful.
It can take on average 2-6 years, and several doctors to even receive a FMS or CFS diagnosis.  At that point, we need to realize that we really do have the power of choice.  All too familiar are the stories of  uncaring, dismissive doctors who leave their patients feeling misunderstood and undeserving of their medical attention.
There are excellent doctors are there.  Doctors who are not 'tunnel visioned' in their care of you.  In other words, the best doctors are the ones who take a holistic approach to their patients health.  Treating the 'whole' person, as opposed to simply addressing the obvious malady.
Find out what Traits Kristine recommends . . .

Better Days Ahead ~ Improving Quality Of Life With LDN For Fibromyalgia Pain Relief

As of yet, there is no cure for either Fibromyalgia or Chornic Fatigue Syndrome/M.E.  Most of us are familiar with the usual medications used to treat the symptoms of these two diseases.  Many of us are equally as familiar with the adverse effects of these drugs.  Just this past month I have read several articles concerning law suits, suicides, and overall horrific experiences pertaining to these side effects.
Personally, the downside of the medications outweighed any positives, and have kept me from trying them.  Yet my pain levels have ratcheted up this year, and I've finally considered looking into something that may help.
When I was approached by LDN Doctor about a free consultation with their physician to talk about a potential prescription for Low Dose Naltrexone, I was curious.  I immediately went into 'research mode'.  What I found intrigued me.
What did Kristine find? . .


What it’s Really Like to Live With Fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue).
The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.
Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.
See what else Melissa has to say . . .


The Fay Farm Healing CBD Hemp Lotion and Warming CBD Muscle Rub Review

If you read my recent “how I’m doing update,” then you know it’s been a trying three months for me. Despite making improvements in sleep, fatigue and gastrointestinal issues, I’ve still been experiencing quite a bit of fibromyalgia pain over the winter months.
My feet have caused the worst of it because they’re constantly tingling and burning now from neuropathy. It’s made it hard to get even basic things done like cleaning and grocery shopping.
My fibro friend Julie over at Counting My Spoons told me about The Fay Farm’s Healing CBD Hemp Lotion and how it helps quiet the neuropathy in her legs. I reached out to The Fay Farm, and they were happy to send me their Healing CBD Hemp Lotion and Warming CBD Muscle Rub on the agreement that if I liked them, I would review them on my blog. Well, I loved them!
Read Donna's review . . .

Adult coloring: How a favorite childhood pastime can help you manage chronic illness

Every time I visit my local arts-and-crafts store, I stop by the display of adult coloring books and pencils near the front door. I pick up several of the books and flip through the pages, looking for one that wouldn’t put my obsessive compulsive tendencies into overdrive. (I admit I’m completely intimidated by some of the more intricate patterns.) I look at the packages of colored pencils and markers and wonder if they flow smoothly or do they grab the page.
I think about how 10 years ago I used to secretly keep a Strawberry Shortcake coloring book and tattered box of Crayola crayons in my desk drawer. There was something soothing about pulling out that coloring book, turning to a random page and distilling life’s choices down to blue or purple.
I haven’t colored in years, but I know one day I’ll walk out of that store with my first adult coloring book and a set of pencils, and my lifelong love affair with coloring – in fact, one of my earliest memories is finding coloring supplies in my Christmas stocking as a young child – will resume.
See what the colourers say about it and what they have done . . .

More insurance companies now paying for FM/a fibromyalgia test

Do you have a family member, friend or physician who doubts you have fibromyalgia? Well, there’s a little-known test you may not have heard of that could finally prove you’re really sick.
In 2013, Los Angeles-based biomedical company EpicGenetics made international headlines when it introduced FM/a, the first ever fibromyalgia test.
While FM/a hasn’t caught on in most doctors’ offices, more insurance companies are now paying for the test. FM/a is covered by most Medicare plans. Private insurers, such as Blue Cross Blue Shield, UnitedHealthcare and Aetna, also are starting to pay for the test on a case-by-case basis.
The test’s steep price tag – $794 – has been a deterrent for patients, many of whom are already living on fixed incomes because they’re unable to work due to poor health.
EpicGenetics is trying to make it easier for patients to afford the test by providing free assistance with insurance processing. The company’s insurance processing department contacts insurance companies on the patients’ behalf to find out if the test is covered and what the cost would be to the patient.
Find out more abut the test . . .


Message from Beth

Sign up today and help us raise more funds without it costing you a penny. Whether you shop online or in store you could be helping the awareness and research funds. The stores will give us a donation ... so it really won't cost you anything.
25 sign ups so far - thank you. Computer, IPad, Android etc ... everyone can do it.
Join up now! . .


Fibromyalgia Patients Have Blunted Touch Perception, Study Finds

Fibromyalgia patients perceive touch differently compared to healthy individuals, suggesting that there is abnormal processing of signals in C-type skin nerve fibers in fibromyalgia.
A research team from the National Center for Complementary and Integrative Health in Bethesda, Maryland, investigated whether patients with fibromyalgia rated the perception of touch differently than healthy individuals. They also wanted to explore if opioid signaling was involved in any potential findings.
Earlier studies have suggested that patients with fibromyalgia have less available opioid receptors in their brain. In addition to their involvement in pain signaling, opioid receptors mediate feelings of reward to natural behaviors.
Read about the study . . .

Tonix to Present Programs for PTSD, Fibromyalgia Drug Candidate at European Conference

Tonix Pharmaceuticals, a company dedicated to developing next-gen medicines for fibromyalgia and post-traumatic stress disorder (PTSD), announced its Executive Vice President of Commercial Planning and Development, Ronald Notvest, Ph.D., MBA, will present at the 10th Annual BIO Europe Spring Conference in Sweden.
Notvest’s presentation will provide a corporate update and a general overview of Tonix Pharmaceuticals’ fibromyalgia and PTSD clinical programs. Tonix is currently evaluating the drug candidate TNX-102 SL, an FDA Investigational New Drug
Read about the clinical trials . . .

Understanding Brain Immune Interactions in Fibromyalgia May Lead to Better Treatments

While fibromyalgia is increasingly viewed as a serious medical problem, patients are still regularly dismissed with demeaning comments like the disease is just in their heads. But new brain research might prove that this notion is right – just not in the way of condescending criticism.
Jarred Younger at the University of Alabama at Birmingham was convinced that there was more to fibromyalgia than the research and clinical communities were willing to admit. “I made it my mission to figure out what is wrong with these patients and how to treat them,” he recently told the UAB Magazine in an article focusing on his research, “Prisoners of Pain – Solving the mysteries of fibromyalgia could help patients break free.“
Discover his findings . . .


The Real Cause of Fibromyalgia Related Sleep Problems

We’ve all been there before – right? You get what you think was a full night’s rest – but when the alarm clock rings you feel exhausted – like you’ve just taken a sleeping pill. For many of us with fibromyalgia, this is a cruel reality of our condition.
A recent study is shedding new light on the sleep problems associated with fibromyalgia. The study, published in the Clinical Journal of Pain, compared fibromyalgia patients to both a people with no sleep problems as well as patients suffering from primary insomnia.
As expected – fibromyalgia sufferers’ results were easily distinguishable from people without any kind of sleep disturbance. Somewhat surprisingly, though, researchers discovered that the sleep patterns of fibromyalgia patients also differed from those within the primary insomnia group.
Read more about this . . .


Spoons? What Spoons!?!?!

We are always hearing about “spoons”, ”marbles”, ”pennies".  Whatever the imagery used, it is to represent the same meaning - available energy.
With that said, I know that I am not the only one that just gets tired of having such a limited supply of “spoons”!!!  I am tired of the way it negatively impacts life - the additional stress that it brings to all members of the family - the restrictions and limitations.
So . . . I did what everyone with a chronic condition/illness should NOT do!
Find out what she did . . .


Be Our Guest Fridays {39}: My Journey with Chronic Illness by My Fruitful Home

I always like to hear about fellow patients’ journeys with chronic illness. It helps us learn from each other and raise awareness about how our chronic illnesses started and how it impacts our lives.  Today I’m happy to share with you my blogging friend and name twin Tanya from My Fruitful Home. Tanya interviewed me about Motherhood and Chronic Illness a few weeks ago and now it’s our turn to hear your story. If you’d like to share your story or helpful tips about living and thriving with chronic illness, please let me know in the comments. 
My Journey with Chronic Illness - By Tanya from My Fruitful Home
Hello, Mom’s Small Victories readers. I’m Tanya from My Fruitful Home and I am honored to be here. I blog about living abundantly with fibromyalgia and chronic fatigue syndrome. My journey started many years ago. My husband and I got married in our early twenties and will be celebrating our twenty-fifth wedding anniversary. Wow! That’s hard to believe. 
Read Tanya's story . . .


Could You Have Fibromyalgia AND Lupus?

Because lupus and fibromyalgia share some symptoms, it is not always easy for doctors to distinguish between the two. To make things more complicated, it is also possible that a person could have both conditions simultaneously.
Fibromyalgia vs. Lupus
Fibromyalgia usually brings fatigue and muscle pain and soreness in multiple regions (i.e. neck, spine, shoulders, hips). These symptoms are typically aggravated by lack of sleep. Stomach aches, headaches, numbness and tingling in the hands and feet are also associated with fibromyalgia. While fatigue and muscle pain are also symptoms of lupus, these complaints are usually accompanied by a rash on the face, across cheeks and nose, which is aggravated by sunlight. Kidney problems, difficulty breathing and damage to other organs and tissues are more likely to be associated with lupus.
Find out more . . .


Optimizing Nutrition for Fibromyalgia

Holton and Jones offer a general outline for an improved diet that will help with fibromyalgia symptoms.. They acknowledge that the diet may take more energy than a patient has at the beginning (a helper may be needed); however, in their experience, adherence to the diet can result in increased ability to cook in as little as one week.
They point to a family of food additives, called excitotoxins, which their research shows could be a factor in conditions like fibromyalgia and IBS. These items, which are used to improve a food’s flavor, contain chemicals that can “cause dysfunction in neurotransmission when consumed in high enough amounts.”
Find out what they are . . .


International Awareness Day for ME, MCS. CFS,FM - May 12th

It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis(ME), Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivity (MCS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!

Support May Twelfth in sharing this message, on FaceBook, Twitter or Tumblr.  We will post this one-time message to your account on May 12
Join in the Thunderclap and tell the world on 12th May . . .



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

Today we are going out for a family meal to celebrate the birthdays of our son and daughter who were born two years and one day apart.  Their birthdays are on Monday and Tuesday, 11th &12th April, but weekday meetups are not possible and holidays get in the way!  There will be seven of us so it should be a fun party.
Enjoy your weekend too

Well wishes to all


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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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