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FMS eNews 30/01/2016

This week we look at technology developments useful to us, more about treatments and  pain relief, dangers of drugs addiction and side effects. Your help is needed in assessing the accessibility of assessment centres and your views on post operative pain relief.  And of course there's loads more for your edification!
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 WORDz for the WEEK

 257.  The measure of man's real character is what he would do if he knew he would never be found out.
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Opiates; Magnesium; Muscle Spasms

 Many of us take opiate pain relievers like Vicodin, even though the medical community is largely against that. See what evidence makes doctors doubt their effectiveness as well as why some of us do get relief from them, below.
Also this week, a look at an important supplement for us, why our muscles spasm and what to do about it, and some other articles that have been updated with new information.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
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 Inflammation in Fibromyalgia - What is Its Role?
The role of inflammation in fibromyalgia has been the topic of research and debate for decades. In fact, the condition used to be called "fibrositis," which means "fibrous-tissue inflammation." The medical community came to use fibromyalgia ("fibrous-tissue and muscle pain") instead, believing it was more accurate due to an apparent lack of inflammation.
However, we now have a growing body of work suggesting inflammation may play a role, after all.
This line of inquiry could lead to a better understanding of the illness as well as expanded treatment options.
Why the Confusion?
Find out . . .
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 27 January 2016 newsletter

 In this edition we have the first results of our request for information about Atos personal independence payment (PIP) face-to-face assessment centres.
So, if you’re assuming that you’ll be able to get into the building without difficulty when you attend for your medical.
Or that the examination room will be on the ground floor, rather than the sixth floor.
Or that there will be accessible toilets you can use after a very long journey and possibly a further wait to be seen.
Then you may want to read what members have told us so far.
But there’s still over a hundred centres that we don’t have any information on.
So please use the links below this article to tell us anything you can about the assessment centre you attended, if you have already had an Atos PIP medical.
Knowing what they are up against in advance could make someone else’s face-to-face a lot less distressing.
Read the rest of B&W newsletter
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The controversies surrounding Prozac for fibromyalgia pain
Prozac as a drug and the historical use thereof is a controversy all on its own. Books have been written about it. Because of what they have to endure, even on the best of days, men and women who suffer from fibromyalgia are still using the drug. 

 Find out more . . .
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If Fibro is the most Googled condition (see last week's item ) "The UK's most searched illnesses", I wonder why so many medical people either don’t know about it or choose to ignore it? During the last six months I have had a stroke ( fortunately not having much in the way of long term effects ) and an operation on an eye. When going for various tests and examinations I have also mentioned that I have Fibro but on no occasion have the doctor/nurse commented upon this or suggested that it might make any difference to the treatment I received. We all know that Fibro people feel pain more than most others yet the need for extra pain relieving medication was not suggested ( not until I explained my need during the operation ) When I received an “all over” check after the stroke the doctor brushed aside my answer to one of her questions that Fibro made the problem worse.
No way I am I suggesting that I received anything other than excellent treatment but I wonder whether this resonates with other Fibro friends?
My reply was "I guess it's the patients not the medics who are doing the googling, mainly because the medics are not coming up with any answers.  Sorry you had poor responses.  They need to be made aware, - but how!!! 
With your permission I will put you message in next week's eNews.  Have just finished this week and am about to post. Glad to know you got good treatment."
Has anyone anything else they could add to this subject? Your comments are welcome.  Use the 'Post a Comment' box at the bottom or email me fmsstella@gmail.com
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Fibro Warriors Under 40 – Kristin Sciarappa
Following Bailey’s interview, I was contacted by Kristin Sciarappa, another young Fibro Warrior who wanted to share her story. She also wanted to share how she has decided to reach out to younger Fibro Warriors with her new blog, My Fibro Journey, and a Facebook Group – Fibro Warriors Under 40.  Kristin, who will be 30 in March, 2016, was diagnosed with Fibromyalgia at the age of 28 and lives in Milford CT.
Tell us a little about yourself:
I’m 29 years old (the big 3-0 in March!) and I’ve been married for a little over a year to my other half, Jim. I don’t have any children, but I have a cat named Kit Kat who I treat as if she were my child! I work full-time as a pharmacy technician. I enjoy baseball, especially the Boston Red Sox, listening to music, watching my favorite TV shows and spending time with my husband (which doesn’t happen as often as I’d like).
Continue reading . . .
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The Ways Technology Is Aiding Fibromyalgia Sufferers
Those living with invisible illnesses can often find themselves in difficult situations. Living with an invisible illness such as Fibromyalgia can create a lot of stress and pressure. Thankfully a number of technologies have been developed that can help.

  • Magnetic Stimulation Technology
  • Cloud Healthcare Technology
  • Health Trackers
  • Mobile Applications
  • The Internet and Online Communication

Find out more about each of them . . .
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Deep Breathing for Fibromyalgia (Guest Post)

 The title of this post sounds bizarre, doesn’t it? As unconscious breathers, we don’t have to think about breathing we just do it. It’s something we take for granted and we often don’t think about the impact that breathing can have on our bodies. Interestingly, when you have fibromyalgia or chronic pain, consciously thinking about how you breath might actually help you to improve your life with chronic illness.
Continue reading . . .
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7 things you need to let go of to feel better
Sometimes we hold on so tightly to things that we don’t need. I think that when we live with chronic illness we hold on even tighter. Illness strips so much away from us that we can feel it necessary to hold onto anything that’s left, even if what we are holding onto isn’t at all good for us.  Yet, there are many things we are holding onto that we need to let go of, and letting go of those things will allow us to feel better mentally, spiritually, and maybe even physically.

  1. Let go of your anger. 
 2. Let go of worrying about what others are doing.
 3. Let go of thinking that others are “better than you.”
 4. Let go of false ideas. 
 5. Let go of the need to avoid problems. 
 6. Let go of thinking that no one wants to be around you.
 7. Let go of the little things that annoy you.
Find out more about each of them . . .
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 Severe Muscle Cramping and Drugs
Anyone with fibromyalgia is familiar with the muscle spasms and cramping.  It’s the most pervasive symptom of fibromyalgia and it’s one of the primary ways for doctors to determine a diagnosis.  However, not every symptom you experience is due to fibromyalgia.  It can trigger other conditions or those conditions can be exasperated or the other way around.
But sometimes the problem isn’t coming from a condition, but rather from a treatment.  Drugs in particular.  Medications often have a long list of side-effects and severe muscle cramping is one that several list.
Read more . . .
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WEEK OF JAN. 25, 2016 FIBROMYALGIA AND ME/CFS NEWS

 Top stories …
Three lots of Lyrica have been recalled due to heat damage.
It’s an epidemic: Chronic fatigue syndrome affects 1 in 50 teenagers, reports Newsweek.
Another new fibromyalgia drug is in the works. Biotech research company Premier Biomedical has filed a provisional patent on a new drug to treat fibromyalgia, neuropathic pain, MS symptoms and alcohol/chemical addiction. According to the company’s news release, “This new drug is in addition to Premier’s existing Feldetrex® drug, to compete in this segment of the health care market representing an opportunity of $16B annually.”
From Vice.com: “The withdrawal I experienced after quitting Cymbalta was worse than my depression.” (Want to know more about Cymbalta’s withdrawal symptoms? Visit my Cymbalta withdrawal lawsuits page.)
The National Drug Treatment Centre in Ireland says the misuse of Lyrica by drug addicts “is a serious emerging issue which should be monitored carefully.”
Fibromyalgia makes this list of the most frequently searched for conditions in the U.K.
See these stories in detail plus more information . . .
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FM Awareness N Ireland

WAYS WE ‘FAKE’ OUR CHRONIC ILLNESS SYMPTOMS
We fake our Fibromyalgia syndrome (FMS) symptoms all the time.
Every day.
For as long as we can remember.
It is second nature; it’s why we are so good at it.
Now I don’t mean we are faking the actual symptoms of our condition, making them up or exaggerating them. They are very real to us, and they are ever-present in our lives. Quite the opposite, in fact — because of the invisibility of Fibromyalgia, 
We have become a master at faking being “normal.” 
Here are some of the ways we have learned to conceal our illness on a daily basis and to blend with the masses — to appear to be “normal.”
Find out what they are . . .
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 7 Best Natural Treatments for Fibromyalgia

Fibromyalgia is an illness that stumps doctors while patients look for relief. The mainstream medical community has only a relatively small group of treatments for fibromyalgia, most of which provide only incomplete relief from chronic pain or have a long list of unpleasant side effects. Consider instead some of these natural alternatives that may provide some comfort without unwanted effects.

  •  Acupuncture
  •  Vitamin D
  •  S-adenosylmethionine (SAMe)
  •  Yoga
  •  5-HTP (5-hydroxytryptophan)
  •  Regular Exercise
  •  Adequate Sleep


Read about them all  . . .
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Alternative Treatments for Fibromyalgia

 Fibromyalgia is a complex and poorly understood disease. People with fibromyalgia experience fatigue and muscle pain. The goals of treatment for fibromyalgia are to reduce muscle pain and stiffness, improve sleep, and teach patients to recognize and reduce stress. There are alternative treatments that show promise, but the results of studies are mixed and there is still a need for high-quality research to be done.
However, many people have had success in using alternative treatments for many conditions, including fibromyalgia. Before trying any alternative treatments, you should check with your doctor to be sure that the methods are safe and right for you.

  •  Acupuncture and Acupressure
  •  Chiropractic Care
  •  Mindfulness Meditation
  •  Herbs and Supplements

Read more about each treatment . . .
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NIH Sends Top Central Nervous Infection Specialist To Speak at CDC ME/CFS Meeting
Chronic Fatigue Syndrome (ME/CFS) is going to be the subject of a Grand Rounds presentations at the CDC in February. Grand Rounds presentations are talks given by experts on medical topics of interest. According to the CDC this one will be seen by thousands of providers in and outside the U.S. It's a moment of increased visibility for ME/CFS.
Except for the last (and most intriguing) one, this one, consisting of four talks over an hour, will be lead by familiar faces:
Dr. Lapp: "The Clinical Presentation of ME/CFS",
Dr. Unger: The "Public Health Approach to ME/CFS"
Dr. Komaroff: “Lessons from the Institute of Medicine and NIH Pathways to Prevention Reports”
The Central Nervous System Infection Specialist
We may have heard much of what the first three presenters will say but then comes a new face: Dr. Avindra Nath. Nath is the Chief of the section on Infections of the Nervous System at the National Institute of Neurological Diseases and Stroke (NINDS) and the intramural clinical director of the NIH's huge Clinical Center. 

 The Grand Rounds Presentation
The presentation will be webcast "to thousands of providers, researchers, and the public." Details and previous programs can be viewed at http://www.cdc.gov/cdcgrandrounds/
The presentation will be archived and viewable after 48 hours. The CDC gave this link for those wanting to watch the presentation live. 
​
CDC’s Public Health Grand Rounds Presents:
“Chronic Fatigue Syndrome: Advancing Research and Clinical Education”
Tuesday, February 16, 2016
1:00 p.m. – 2:00 p.m. ETtre] 
Read the full story . . .
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What is The Matrix Assessment Profile, or The MAP?
Matrix Assessment Profile MAP KitThe MAP is an evaluation process — a test done right from your own home — that looks into your biochemistry revealing imbalances at the cellular level that are at the root cause of any number of chronic, unresolved symptoms.
The MAP pinpoints why you feel the way you do and answers the questions:

  • “Why can’t my doctor tell me what’s wrong?”
  • “Why do I continue to feel the way I do?”
  • “How can I get more energy and perform better?”
  • “Are there signs in my biochemistry that point to future health concerns?”

The MAP looks at factors in your biochemistry that conventional medicine doesn’t; and it does so in ways that traditional lab work done by your doctor overlooks.
Continue reading . . .
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 Government told to restrict gabapentin and pregabalin availability

 The prescription drugs gabapentin and pregabalin could soon be more tightly regulated in the UK, after Government advisors called for them to be classed as controlled drugs.
The plan – which would see gabapentin and pregabalin categorised as ‘Class C’ drugs and placed under schedule 3 prescribing regulations – would mean the drugs cannot be repeat dispensed and prescriptions will only be valid for one month.
The move comes after increasing concerns over recreational use of the drugs, particularly amongst the opioid abusing population, and a rise in deaths related to their misuse.
Read on . . .
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A good motto!  I hope there is something in this edition that gives YOU hope.
Stella
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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 GREEN 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 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 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 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 fmsstella@gmail.com and you will be added to the emailing list.
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