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Stella's Eye News 26/10/13


Hello Everyone
This is not a normal FMS eNews.  It isn't even about FM!  It is about my recent journey from binocular to monocular vision.  If that is of no interest to you, then don't bother to read it.  I felt this was a good way to pass on my experiences.

Firstly, I would like to thank all those of you who have sent cards, e-cards, messages and gifts and who have been praying for me. I have been very conscious of your love and concern.   It is now nine days since I was discharged from St Bart's Hospital. This is the first time that I have switched on my computer and writing this message is the first task I have undertaken. I have not even looked at emails yet.


But let's revert to the beginning! My problem was ocular melanoma/eye cancer. It was too large to treat and the only option was to remove the eye.  I went to St Bartholomew's Hospital, London on 4th October for a PET scan to determine whether the cancer had spread to other parts of my body. Fortunately it had not, but further scans were deemed necessary. On 15th October I returned to St Bart' where I was given ultrasound scans on my neck and liver and a chest xray, then admitted for surgery the following day. I had a spacious fifth floor, single, en suite room with a great view over the city.


I was first on the theatre list on Wednesday and when I awoke after the operation, at midday there was no pain and I had a large plaster over where my eye had been. On Thursday morning the surgeon came to see me, changed the dressing and discharged me. But I could not leave until the pharmacy produced the antibiotics I needed and transport could not be ordered until the antibiotics were in my possession. But the transport was worth waiting for and we left at 4pm. It was an ambulance, complete with flashing lights and siren which were used to full advantage throughout the journey which lasted an hour and twenty minutes. It normally takes from two to two and a half hours! Need I say more??


On arrival home the dressing was removed – mission accomplished. Eye drops have to be administered 4 times day and a District Nurse has been visiting me. Chris attached a flower picture to my left spectacle lens – better than a black patch. So far the eyelid remains closed, but I am hoping I will eventually regain muscular control.


The eye was replaced by an orbital implant to which my eye muscles have been attached. I will eventually get a prosthetic eye, like a large contact lens which should, if all goes according to plan, move with the 'good' eye and look quite natural.


Ocular melanoma is one of the rare cancers and there are only three centres in England that deal with it, the other two being Liverpool and Sheffield. There are only around 500 cases per year as opposed to 50,000 cases of breast cancer.


I was somewhat apprehensive as to how much I would be able to do with monocular vision, but so far, so good. During my recuperation time I have knitted a further 40 hats for the AgeUK/innocents drinks Christmas campaign. I am trying to be positive and remain useful but I think I shall have to limit my computer usage for the foreseeable future. The screen is beginning to dance!  So no promises as to when eNews will return.


The biblical text – 'If your eye offend you, pluck it out' has been realised!

Best of wishes to all

Stella

FMS eNews 12/10/13

Hello
Next week I will be in hospital for my operation.  I regret that this means I will be unavailable to produce an FMS eNews.  I hope it will not be too long before normal service is resumed.

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WORDz for the WEEK

139.  Some people spend their lives for a purpose; the rest spend it looking for one.  (or not!!!)

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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome


Adrienne Dellwo
 With the launch of the Affordable Care Act (a.k.a., Obamacare) this week, you may be wondering what it means for you, and how to navigate the new system. You'll find some help, below. (USA only)
Also this week, Michael J. Fox is back on prime-time TV, Parkinson's symptoms and all! See what that could mean for us.
Plus, get a look at what the true role of inflammation in fibromyalgia might be, based on research from the past couple of years.
Down in Featured Articles, you'll find some content specifically for this time of year.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/30524c504804f5c9860025d4.htm

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Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information
It’s a Jungle Out There

The key to survival in the animal world is to be able to detect threats in the environment and react appropriately. From the simplest sea creature dependent on temperature or saline gradients for survival to wildebeest on the savannah on the lookout for predatory lions – knowledge is god and fast and efficient processing of sensory information can make the difference between life and death.

Read more: http://www.cortjohnson.org/blog/2013/10/03/sensory-overload-study-suggests-brains-fibromyalgia-pummeled-much-information/

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Damaged Neuroprotective Process Spells Pain for Fibromyalgia – Suggests Small Fiber Neuropathy is Present


A key neuroprotective
process that should
 kick in when your
 muscles are in pain
 appears to be
 damaged in fibromyalgia
From stiff muscles to painful trigger points to problems with exercise, the muscles can be a problem in fibromyalgia. It turns out that muscles have an interesting way of relaxing when they’re in pain. Every time you contract a painful muscle, your nervous system should take a little break, give your muscles a little break, and reduce your pain.
Rev Bras Reumatol. 2013 Jun;53(3):288-295.Importance of cutaneous silent period in fibromyalgia and its relationship with disease characteristics, psychological disorders and quality of life of patients. Umay E, Ulas U, Unlu E, Akgun H, Cakci A, Odabasi Z. neurons 
These researchers looked at a curious phenomenon called the ‘cutaneous spinal period’ (CSP) which signifies a period during which the signals from very small sensory nerves to the brain get inhibited. Since these sensory nerves (small nerve fibers) carry pain signals to the brain, too much sensory nerve activity is going to leave you in pain.

Read more: http://www.cortjohnson.org/blog/2013/10/06/damaged-neuroprotective-process-pain-fibromyalgia-small-fiber-neuropath/

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An Independent Researcher's Investigation Of Nutritional Supplements

Here is the main conclusion.
To get to the truth about nutritional supplements, above all...
Trust facts, not authorities.
After all, it was none other than Albert Einstein, PhD, (1879–1955) who warned:
“Unthinking respect for authority is the greatest enemy of truth.”
Because it is not uncommon, as Einstein was well aware of, for official authorities and acclaimed experts to omit, ignore, or even suppress facts (sound scientific evidence).

http://www.supplements-and-health.com/

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Physical Side Effects of Oversleeping

When it comes to sleep, can you have too much of a good thing? It's true a good night's sleep is essential for health. But oversleeping has been linked to a host of medical problems, including diabetes, heart disease, and increased risk of death.
Researchers are careful to note, however, that two other factors -- depression and low socioeconomic status -- are strongly associated with oversleeping. Those two factors may be the reason for the observed negative health effects. For example, people of lower socioeconomic status may have less access to health care and therefore more undiagnosed illnesses, such as heart disease, which, in turn, may cause oversleeping.

http://www.webmd.com/sleep-disorders/guide/physical-side-effects-oversleeping?ecd=wnl_slw_100613&ctr=wnl-slw-100613_ld-stry&mb=

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Slideshow: 10 Daily Habits to Reduce Chronic Pain


1. Get an Endorphin Boost: Exercise
It's a Catch-22: You're hurting, so you don't exercise; but without exercise, you may lose muscle tone and strength, making pain worse. Fortunately, even mild exercise releases endorphins, the feel-good brain chemicals that lift mood and block pain. Ask your doctor if aerobic, strengthening, or stretching exercises can give your body the boost -- and relief -- it needs.

See this and the other 9 here
http://www.webmd.com/pain-management/chronic-pain-11/slideshow-pain-tips?ecd=wnl_cbp_101013&ctr=wnl-cbp-101013_ld-stry&mb=

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9 Things You Can Do to Avoid Fibromyalgia Pain and Fatigue

  1. I'm having a hard time getting things done. What can I do?
  2. How can I exercise when I feel tired?
  3. Can massage reduce my fibromyalgia pain?
  4. What can I do for my muscle pain and stiffness?
  5. Can acupuncture help fibromyalgia pain?
  6. How can I get a good night's sleep?
  7. I'm overwhelmed by my fibromyalgia symptoms. What can I do?
  8. Are supplements a safe way to treat pain and help me sleep?
  9. How can I get some stress relief?

These questions are answered here:-
http://www.webmd.com/fibromyalgia/fibromyalgia-pain-10/slideshow-pain-fatigue?ecd=wnl_fib_100813&ctr=wnl-fib-100813_ld-stry&mb=

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Depressed? 12 Mental Tricks to Turn It Around

Medication can help depression. But a type of therapy called cognitive behavioral therapy (CBT)—which focuses on changing behavior, rather than talking about your childhood, for instance—can be an effective adjuvant to or even substitute for drugs. “It’s much more focused on what you seem to be doing and thinking that is keeping you depressed,” Simon Rego, PsyD, director of psychology training at Montefiore Medical Center in New York City. Some of its methods can be practiced at home, on yourself, with no special training. So here are some tips for breaking the cycle of negativity.

http://www.health.com/health/gallery/0,,20591880,00.html?xid=mindandmood10082013

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Stick It To Fibro Signs Campaign

 So, one universally accepted emotion among all Fibromyalgia, and chronic illness patients for that matter is that our illnesses suck, they bite big time, they’re awful, we hate them, etc. So, we are implementing a brand new awareness campaign! It’s called the “Stick It To Fibro” signs campaign! So, I’ll explain a little bit more about the idea behind the campaign below.

http://fighterzblog.wordpress.com/2013/10/09/stick-it-to-fibro-signs-campaign/

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I CAN TOO DO IT!!! Watch me!

During a conversation with my Daughter the other day, we started out talking about shopping. She said she would rather go to the Mall with me but that she knew I couldn’t do that. I asked her “who said I can’t”. She said that it would hurt me too much to go. I agreed, but said that it was my decision not hers.
She saiwater waved like going to the Dells. Well, I went to the Dells with them and even tried the surfing. Did it hurt afterwards? HECK YA!, but it was my choice.

http://fighterzblog.wordpress.com/2013/10/05/i-can-too-do-it-watch-me/

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Fibro Fog - the Real Cause

The brief loss of memory or confusion, often referred to as fibro fog, can be incredibly frustrating and even distressing. I know I was very concerned that my usual alert mind appeared to be gone forever. 
Memory is a precious thing and when you find you cannot even hold a conversation because you find it hard to concentrate, it is understandable that you may feel distressed about it. 


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Fibromyalgia in Tonbridge 

NEWSLETTER for October 2013 is now available.

https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Tonbridge_FM_News_13.10.pdf

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Oct. 5th, 2013 Daily Newsletter

Oct. 6th, 2013 Daily Newsletter

Oct. 8th, 2013 Daily Newsletter

October 10th, 2013 Daily Newsletter

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I had a phone call from St Barts yesterday to tell me the result of last week's PET scan.  The cancer has NOT spread, it is contained in the eye.  So I have much to be thankful for.
Best of everything
Stella

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N.B. I would like to point out to you that the information in my 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.
I previously sent out emails as FMSSAS eNews. Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com These ceased at the end of November 2012 when I resigned as a trustee.
This blog commenced on 8th December 2012.

FMS eNews 05/10/13

Hi there
Have you ever wished you could find an article you read a few weeks ago but can't remember in which week it was featured?  You can find it through the Search Bar at the top of each page.  Type in the subject, eg 'Vitamin C' or 'Sleep', or whatever subject you are looking for and press Enter/Return.  The Search button does not work on my computer, but it might on yours!  You will get a list of all references to your subject that have appeared in previous eNewses. Then just choose the one you want.


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WORDz for the WEEK

138.  Effort is only effort when it begins to hurt a little.



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Dr. G’s Tips for Renewing Your Energy, Naturally Part 1 of 2


In our current fast-paced world we multi-task and over-extend ourselves constantly and, after a while, running around stressed becomes the norm without considering what your body's “gas tank” needs to perform and stay energized.
If you, like me, work, plan, organize, strategize, travel, design and live life to its fullest, we MUST remember those simple things that keep us "fueled”. Daily I’m asked by readers and patients about how to add more “zest” to their lives because their get-up-and-go got-up-and- went…where to, no one knows!

http://www.yourhealthdetective.com/2013/09/dr-gs-tips-for-renewing-your-energy-naturally-part-1-of-2.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+YourHealthDetective+%28Your+Health+Detective%29

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Dr. G’s Tips for Renewing Your Energy, Naturally Part 2 of 2

As promised, this blog continues on tips for renewing energy:
Get your vitamin D – experts suspect D helps regulate metabolism and insulin secretion – both impacting our energy levels. If you eat your lunch at your desk, don’t for many reasons. One important reason is that sunshine helps boost vitamin D levels. If you’re taking vitamin D and still don’t have the energy you should, consider supplementing with a form of vitamin D that is better absorbed – known as high potency D3 10,000 with K2, available only from health practitioners.

http://www.yourhealthdetective.com/2013/10/dr-gs-tips-for-renewing-your-energy-naturally-part-2-of-2.html#more

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Knowing Your Greens to Prevent Kidney Stones, Calcium Deficiency & Gout


Yes, leafy green vegetables are healthy – they help us lose weight, increase energy, help detoxify, fuel your body, and even help reduce cancer risk. But what’s behind those leafy greens?
What most people do not know is about a sneaky chemical that lurks under all those health benefits – Oxalic Acid -  a chemical actually linked to serious health disorders that lead to calcium deficiencies, kidney stones and gout among them.

http://www.yourhealthdetective.com/2013/09/knowing-your-greens-to-prevent-kidney-stones-calcium-deficiency-gout.html#more


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What Stops You From Pacing?… An Inquiry Into Pacing in Chronic Fatigue Syndrome and Fibromyalgia By Cort Johnson on September 27, 2013


Pacing – everyone knows they should do it but how many are really good at it? “Thou Shalt Pace” is kind of the first commandment for people with chronic fatigue syndrome and fibromyalgia. Nothing trumps pacing. If you pace you’ll probably feel better, and if you don’t you know you’re going to feel worse. It’s like gravity; you ignore it at your peril but I, at least, ignore it too much.

Read more: http://www.cortjohnson.org/blog/2013/09/27/what-stops-you-from-pacing-inquiry-pacing-chroniic-fatigue-syndrome-fibromyalgia/

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The Lyrica Effect: Lyrica Study Uncovers Key Brain Abnormalities in Fibromyalgia
A Blockbuster Drug 

Lyrica truly merits the description ‘blockbuster drug’. FDA approved for seizures, neuropathic pain, fibromyalgia (2007), and generalized anxiety disorder (Europe), Lyrica (pregabalin) sales hit their peak in the last quarter in the US, bringing in over $550 million for Pfizer. Lyrica’s enormous success despite its side effect and efficacy issues, highlights the needs for better pain relieving drugs. Lyrica’s success – despite issues with side effects and efficacy in a significant number of fibromyalgia patients – highlights the tremendous need for drugs that relieve neuropathic pain.
Fifteen years in development, Lyrica was originally developed to reduce seizures by increasing GABA levels, but was later found to reduce glutamate, substance P and norepinephrine levels instead.

Read more: http://www.cortjohnson.org/blog/2013/09/30/lyrica-effect-study-uncovers-key-brain-abnormalities-fibromyalgia/


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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome

Cognitive dysfunction is one of the more debilitating, isolating, and pervasive symptoms of these conditions.
Get some ideas for clearing away the fog and making your brain work better, below.
Also this week, getting through the cold months ahead, and the pros and cons of motion-controlled video games for us.
Down in Featured Articles, I've included part of my Food of the Week series to help you figure out a diet that makes you feel better. On the right, you'll find some seasonal content.
Take care of yourself!

http://specials.about.com/service/newsletters/chronicfatigue/1380308400.htm


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From Shereen Jegtvig, your Guide to Nutrition 


Four useful articles with 5 related searches and 6 featured articles - and more.

http://specials.about.com/service/newsletters/nutrition/1380722400.htm

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From UK Fibromyalgia Research  Newsletter

Prevalence of the fibromyalgia phenotype in spine pain patients presenting to a tertiary care pain clinic and the potential treatment implications.

Injections for spinal pain have high failure rates, emphasizing the importance of patient selection. It is possible that detecting the presence of a fibromyalgia-like phenotype could aid in prediction, because in these individuals a peripheral injection would not address pain due to alterations in central neurotransmission. We hypothesized that spine pain patients meeting survey criteria for fibromyalgia would be phenotypically distinct from those who do not meet criteria.

http://onlinelibrary.wiley.com/doi/10.1002/art.38178/abstract


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Bone mass and vitamin D levels in women with a diagnosis of fibromyalgia

Contradictory data have been published regarding a possible association between fibromyalgia and osteoporosis or hypovitaminosis D. Most studies, however, have been performed in small size samples and have excluded postmenopausal women. We decided to study this association in a larger sample of fibromyalgia patients including both pre- and postmenopausal women.


http://link.springer.com/article/10.1007/s00198-013-2434-2



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The Use of Antidepressants in the Long-Term Treatment Should not Improve the Impact of Fibromyalgia on Quality of Life

Antidepressant (AD) drugs are effective in the short term treatment of fibromyalgia (FM). It may be useful to study the long-term impact of AD on patients with FM.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3735921/#!po=3.84615



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Treatment satisfaction varied for fibromyalgia patients

Patients with fibromyalgia syndrome reported varied levels of treatment satisfaction that were predicted by specific patient-related factors, according to study results.


http://www.healio.com/rheumatology/fibromyalgia/news/online/%7B27baa600-4e4a-4338-82e7-c15247fcdedf%7D/treatment-satisfaction-varied-for-fibromyalgia-patients


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UKFibroMapp is the most comprehensive pain management app currently on the market.

As Fibromyalgia is unique to each person, so is UKFibroMapp! It can be completely personalised to your needs and requirements and takes into account that there are over 100 different conditions and symptoms within FM.

UKFibroMapp has been designed BY people with Fibromyalgia FOR people with Fibromyalgia.
UKFibroMapp has been designed for ease of use. Use as much or as little of it as you need to help you gain more control and understanding of what is potentially causing you pain and other symptoms.
Information is culminated to create EASY TO READ CHARTS AND GRAPHS THAT CAN BE DOWNLOADED AND PRINTED.

https://play.google.com/store/apps/details?id=co.uk.ukfibromapp


Availability of FibroMapp elsewhere
https://play.google.com/store/apps/developer?id=Bodymap+Apps


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Sept. 28th, 2013 Daily Newsletter

Sept. 29th, 2013 Daily Newsletter

Sept. 30th, 2013 Daily Newsletter
http://us1.campaign-archive1.com/?u=7f494613c5ad4db1b93e647ad&id=c6240afba9&e=3a786b8cc1

Oct. 2nd, 2013 Daily Newsletter

Oct. 3rd, 2013


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This week I have been to St. Bart's again, this time for a PET scan.  This is to determine whether the cancer has spread from my eye to other parts of my body.  Fingers and toes crossed!

Look after yourselves
Stella


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N.B. I would like to point out to you that the information in my 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.
I previously sent out emails as FMSSAS eNews. Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com These ceased at the end of November 2012 when I resigned as a trustee.
This blog commenced on 8th December 2012.