WORDz for the WEEK
262. Wherever you go, go with all your heart.
Tai Chi, Glutathione, Xyrem & More
I've been running About.com's Fibromyalgia & Chronic Fatigue Syndrome page for about 8.5 years now, so while I work hard to provide new information and keep the main articles up to date, some of the lower profile ones can fall through the cracks.
For the past couple of months, I've been on a major push to get those articles updated, and I've been blown away by how much has changed since I originally wrote some of them.
For example, in 2008, we had no published studies of Tai Chi for these conditions. Now? Dozens! And when I first wrote an article on an experimental treatment regimen called the Glutathione Protocol, it was largely unsupported scientifically. Today, the idea behind it is looking pretty solid, even if the treatment itself is still in need of research.
So this week, I bring you some of the most-changed articles I have, newly updated and improved.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+SPECIAL EDITION - Treatment Info for the Newly Diagnosed
When you're newly diagnosed with fibromyalgia or chronic fatigue syndrome, it can be overwhelming to decide what treatment(s) to pursue. This special edition is aimed at getting you the information you need right now in order to make sense of it all.
It'll take some time and experimentation, but as you find the right set of treatments for you, you can make real improvements in your health and your life.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
Read Adrienne's articles . . .
Positivity In Pain: Finding Joy & Happiness Despite Chronic Pain. Kindle Edition
Chronic pain and illness are awful monsters that seemingly have taken away all that we were. But it's time to take our lives back. Living a fulfilled and positive life in spite of your illness is possible! Learn the importance of keeping schedules, why distractions are the most awesome things ever, and more!
About the Author
Jennifer Corter is a 25-year-old stay-at-home mom. After years of battling chronic pain, she decided it was time to get up and live the life she wanted to. Positivity in Pain: Finding Joy and Happiness Despite Chronic Pain is the result of pushing forward everyday and never letting her illness define nor defeat her.
Kindle version FREE for a limited time. . .
Brian Barr Solicitors - Help with Insurance Claims for FM, CRPS and Chronic Pain
Who do we Help?
We specialise in assisting claimants throughout England and Wales with personal injury and insurance claims, in particular, people with chronic pain conditions.
Brian has written an article for Fibro Flare Magazine which you can find below.
Information leaflet here . . .
This is the start of a new series on Chronic Illness Bloggers and each week we will be highlighting a different member. As well as getting to know each other better, we hope that you enjoy this series and that you find the interviews with each member to be insightful and helpful.
This week our blogger of the week is Donna of February Stars.
Donna answers a series of questions . . .
Coping with a Toddler (Fibro or not!)
This post has been a long time coming. I haven’t felt like I was coping these past few months. But we’re here, so that’s winning.
Toddlers seem to have an abundance of energy that I could only dream of. If only Nu would lend me some, maybe it would be easier.
The big thing for me (on the days I’m not working) is to get him active in the morning, when I’m most able and he’s not so tired either. This way the afternoon can be a more relaxed affair.
I am slowly learning that I’ll never feel like I’m coping if I’m putting too much of my energy elsewhere (like work), so my balance needs to be kept in check.
Read Mama's tips for coping . . .
A new survey from Medscape asks the question: Are Doctors Biased Against Patients? And if so, does it affect the treatment they provide. Short answer, Um yeah. They are. I didn’t need a survey from Medscape to tell me that. However, it is interesting to see the many ways that doctors are biased against us. I shared a study a while back that showed that many doctors are biased against patients with Fibromyalgia. Biased might not be the right word there, as what it really came down to was that many doctors are just plain scared to treat us, or simply they don’t want to treat us because they don’t feel they can help us. I can give the latter group a bit of a pass. I mean, really, who wants to do anything when they feel they aren’t getting anywhere. If I were a doctor that didn’t have any good answers for Fibromyalgia (or any illness) I’d refer those patients out to someone who I hoped had better answers.
But, what about this bias survey? . .
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+Women: Often “Miss Treated” By Doctors
All chronic illness sufferers, whether male or female, experience frustration when dealing with the medical system. But if you’re a woman, whether you realize it or not, your struggle is going to be much much harder.
First of all, women are disproportionately affected by chronic diseases that are life-long and that greatly affect one’s quality of life such as autoimmune disorders, fibromyalgia, chronic fatigue syndrome, and most chronic pain conditions. Considering women’s predisposition to these disorders, you’d think doctors would be quicker to spot them when a woman comes into their office, but it’s actually quite the opposite.
Read more abut alleged medical sexism . . .
Having a chronic illness is tough, both physically and emotionally. Some days can be really difficult and in today’s post I am sharing some tips that I hope will help you during those times. Here are 7 tips for dealing with difficult days:
1. Focus on the present moment
2. Listen to your body
3. Rest as much and for as long as you need to
4. Tell someone how you are feeling
5. Pamper yourself
6. Don’t beat yourself up about it
7. Stay hydrated & eat nutrient rich foods
Read more details about each . . .
FIBRO WARRIORS SHARE THEIR BEST TIPS FOR REDUCING SYMPTOMS
Last month, I asked several of my fellow bloggers to share their best tips for reducing fibro symptoms. At the end of the post, I invited readers to chime in with their own tips. This post highlights some of their responses.
We all know there is no cure for fibromyalgia – at least not yet – but there are steps we can take to try to reduce and manage symptoms. Until the research can tell us more about fibromyalgia and the best way to treat it, I think it’s a valuable exercise for us to share what’s working and what’s not, so we can learn from each other. These sharing posts are a way to do that.
See what others say . . .
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+WEEK OF FEB. 29, 2016 FIBROMYALGIA AND ME/CFS NEWS
Top stories …
Pennsylvania pharmaceutical company is developing a THC patch for fibromyalgia.
Time sensitive: Dr. Jarred Younger, best known for his research on using low-dose naltrexone for fibromyalgia, will host a live question-and-answer session on YouTube on Thursday, March 3, at 3 p.m. CT.
Actor Morgan Freeman speaks out about his fibromyalgia.
New Jersey student discovers Cymbalta in her breakfast cereal at school.
How big pharma is spying on our physicians and how that affects the treatment we receive…
Federal legislators are trying to stop Pfizer (manufacturer of Lyrica) from dodging billions in taxes.
And much more besides . . .
Opoids and Fibromyalgia
There is increased concern of adverse effects of opoids on people with Fibromyalgia. “These drugs have never been shown to be effective in fibromyalgia patients, and there is evidence that opioids might even worsen fibromyalgia and other centralized pain states,” Daniel Clauw, M.D., professor of anesthesiology, University of Michigan at the American Pain Society Annual Scientific Meeting in May 2015.
Due to the central nervous system origins of fibromyalgia pain, Clauw said treatments with opioids or other narcotic analgesics usually are not effective because they do not reduce the activity of neurotransmitters in the brain.
Find out more . . .
Oh yes ... we've done it again. The March magazine is once again available.
Please note there will not be a magazine published in April. We are busy organising May 12th Awareness Events. We will be back in May, in time for our 2nd birthday .... yes we have been doing this for 2 years!! We have learned a lot, but our journey has still only just begun.
We are delighted we have been nominated for the National Diversity Awards 2016 and would appreciate your help and support in adding your nomination if you would (link below). Whilst we are realistic enough to realise it is unlikely we will win against some stiff competition, we do believe it will help raise more awareness- see inside the magazine for details.
We are offering an award of our own ... The Florence Nightingale Awareness Award, see the details inside this month's magazine. Will you be our winner .... see inside the magazine for details.
Hope you are keeping as well as possible.
gentle fibro hugs.
Beth and Mag Team
PDF Version here . . .
Dysfunction in spinal cord processing may be responsible for pain in fibromyalgia (FM) patients, according to a study titled “Lengthened Cutaneous Silent Period in Fibromyalgia Suggesting Central Sensitization as a Pathogenesis” and published in the journal PLOS One.
Fibromyalgia is characterized by chronic widespread pain, among other symptoms, but the underlying cause responsible for chronic pain in FM remains unclear. Recent and accumulating evidence suggests that central pain amplification is key for fibromyalgia pathogenesis: a process characterized by augmented pain and sensory processing in the spinal cord and brain, also known as “central sensitization.”
Read about the research . . .
Those Cha, Cha, Changes…How Chronic Pain Changes Your Genes
When you think of the causes of pain in fibromyalgia and chronic fatigue syndrome (ME/CFS) and other painful disorders, you probably think of the nerves or the central nervous system. A recent study suggests that we should thinking much further afield.
The central nervous system is a powerful player but this laboratory study suggests that fibromyalgia and other chronic pain disorder might be better thought of as neuro- immune disorders which affect many processes in both the brain and body.
That seems to make sense. Our experience of pain, after all, can be an all-encompassing one; it can affect our mood, our relationships, our ability to think and our ability to function. It’s no wonder, then, that researchers are finding that other systems of the body are involved.
Read the study . . .
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+Novel Finding Sparks NIH Chronic Fatigue Syndrome (ME/CFS) Gut Study
It started with a failed attempt. Somehow Suzanne Vernon had prevailed upon Armin Alaedini, a PhD from Columbia University look for antibodies that might be attacking the central nervous system in chronic fatigue syndrome (ME/CFS). He found none but then decided to look a little further - and found evidence of an increased antibody response to gluten in a subset of ME/CFS patients. His finding that the degree of the antibody response correlated with symptom severity suggested that this response could be an important player for some people with ME/CFS.
Read on . . .
A personal Conference message
I am not here this week with news for the future but rather to talk about the bad news ... the loss of the 7th conference. There was I thinking 7 was my lucky number, with no idea that the 7th FibCon would be a non-conference to remember?
Since February 20 our final deadline, I have been undoing all the work I have put in since May 2015 to prepare what I hoped would be the “best yet” conference. How wrong can you be?.
As the programme coordinator I have been unbooking the conference. With cap in hand I have written to 16 speakers and therapists who had all agreed to entertain and educate our delegates with news of research and pain treatments. Unbooking a conference was destructive and far worse than booking our annual event.
Read the rest of Jeanne's message . . .
Former Stars in your Eyes winner Faye Dempsey had a career and loved a night out with friends before being left virtually bedridden.
This woman was super fit and ran up to eight miles a day before illness left her as a prisoner in her own body.
Faye Dempsey was active, had a career and loved a night out with friends - now she is wracked with pain so badly there are days when she is virtually bedridden.
The 33-year-old has fibromyalgia, coupled with chronic fatigue syndrome, which means if she manages to leave the house and go out it can take days to recover.
Read Faye's story . . .
Findings Promising, But More Research Needed
Hyperbaric oxygen therapy can help to ease fibromyalgia pain and may even be able to reverse the condition, according to a new study out of Israel.
The study, conducted by researchers from Tel-Aviv University, involved a clinical trial of 60 women with fibromyalgia diagnoses.
Each week for two months the women received five 90-minute sessions in a hyperbaric oxygen chamber, where they breathed in pure oxygen at twice the atmospheric pressure we typically experience. This allows the lungs to take in much more oxygen.
Forty-eight of the women completed the full two months, receiving 40 treatments in total, and 70 percent had “significant changes in brain activity and symptoms.”
Many were able to reduce the amount of medication they were on, and some went off medications altogether.
“The intake of the drugs eased the pain but did not reverse the condition. But hyperbaric oxygen treatments did reverse the condition,” said researcher Dr. Shai Efrati in a statement.
Read more . . .
UK Fibromyalgia March 2016
Pick of the Web
- Naltrexone May Hold Benefits for Fibromyalgia
- Do Fibromyalgia Flares Have a Neurobiological Substrate?
- Acupuncture Can Relieve Fibromyalgia Pain, If It's Tailored Per Patient
- Pregabalin-Antidepressant Combos Examined in Fibromyalgia Study
Read more . . .
+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+-+Gremlins invaded my laptop so I am having to finish off on my desk PC which I do not really like using as sitting at a desk plays havoc with my back! I think there is some rivalry going on because I just got an ipad. Yes, my first one. So big learning curve ahead. I expect I will still be doing this blog on the laptop though. We shall see
Happy Mothering Sunday
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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.
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