FMSSAS eNewsletters

Thursday, 5 April 2012

FMSSAS eNews 12.04.05

Hi there

There’s plenty for you this week after all. Hope you don’t miss seeing it as it’s a couple of days early.

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WORDz FOR THE WEEK

65. Regret is either a hope that has died or one that was never given the chance to live.

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Worthing Fibro News for April

www.fms-sas.co.uk/PDF/WorthingFibroNews1204.pdf

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FIBROMYALGIA IN TONBRIDGE NEWSLETTER: Mar-Apr

www.fms-sas.co.uk/PDF/TonbridgeNews12.03-04.pdf

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Fibromyalgia and low blood pressure

Cardiovascular Effects of FMS

When you have fibromyalgia, your cardiovascular system can be significantly impacted. Everything from your breathing and blood pressure levels to blood flow and energy levels can get out of whack if your cardiovascular system isn’t working properly. While in some cases, your cardiovascular problems could be caused by your fibromyalgia, in other instances, you may suffer from a disorder known as orthostatic intolerance.

http://www.fibromyalgia-symptoms.org/fibromyalgia_cardio_effects.html

NFRA – Low bold pressure

Low blood pressure (neurally mediated hypotension) is common in many fibromyalgia patients. Dr. Peter Rowe at Johns Hopkins University School of Medicine first discovered the connection between low blood pressure and CFIDS. His paper titled, The Relationship Between Neurally Mediated Hypotension and the Chronic Fatigue Syndrome was published in the September 1995 issue of JAMA. Dr. Rowe has replicated his tilt table test in fibromyalgia patients with the same results. He is currently completing a three-year scientific study on the connection between NMH, CFIDS and FMS.

http://www.nfra.net/LowBlood.htm

Simple blood pressure test could diagnose fibromyalgia

Now, a large proportion of the population undoubtedly find the whole procedure a little uncomfortable.Having your arm squeezed until the blood stops isn't the most pleasant experience one can have, you may even feel a little woozy at the prospect. That said, most people are able to suffer the discomfort for a few moments and the test is taken with no problems. It turns out however, that when it comes to fibromyalgia patients, the majority of them experience not only discomfort, but genuine pain when they undergo the blood pressure test. Health care workers noticed that fibromyalgia patients complained of pain and discomfort a lot more often whilst undergoing the test than did the general population and patients with other conditions. This led a group of researchers to investigate whether the standard blood pressure test (Sphygmomanometry) might actually be used as a test to diagnose fibromyalgia.

http://www.ei-resource.org/news/fibromyalgia-news/simple-blood-pressure-test-could-diagnose-fibromyalgia/

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MANAGING FIBROMYALGIA - April 1, #22

HI Everyone!

My current mission in this newsletter, is to list and describe what I consider the 7 most valuable supplements to help relieve Fibromyalgia symptoms. Let's assume that you eat wisely, that is, you eat foods that provide actual nutrition for your body, OR that you are at least taking a good multivitamin, or even Juice Plus+ for a solid whole food foundation that includes vitamins and minerals, trace minerals, B-vitamins, antioxidants, etc. Then the top seven most valuable supplements are: Omega 3 EPA-DHA, Magnesium, Vitamin D, Malic Acid, Alpha Lipoic Acid, 5-HTP and Eleuthero. There are more helpful supplements to be sure, depending on your other issues, but I consider these to be the basics necessary for chronic pain management. These Magnificent 7 cover muscle pain, nerve pain, stress, anxiety, depression, energy, antioxidant needs and more. Read more . . .

http://hosted.verticalresponse.com/790349/a3c2901635/1470670689/c4d29ef80f/

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4 Things It's Hard to Do With Fibromyalgia & Chronic Fatigue Syndrome

Fibromyalgia and chronic fatigue syndrome can affect every area of your life, right down to the most ordinary tasks of daily life. Sometimes, you might be surprised by how difficult "ordinary" things have become for you.

Through talking to a lot of people with these illnesses, I've identified 4 everyday things that frequently become difficult for us because of our many symptoms. A lot of people think they're the only ones that have these kinds of problems, but you are definitely not alone!

http://chronicfatigue.about.com/od/copingwithfmscfs/a/4-Things-Its-Hard-To-Do-With-Fibromyalgia-And-Chronic-Fatigue-Syndrome.htm?nl=1

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10 Things to Stop Doing to Yourself

Living Better with Fibromyalgia and Chronic Fatigue Syndrome

When you have a chronic illness like fibromyalgia or chronic fatigue syndrome, you've got enough working against you - you don't need to make things worse for yourself!

http://chronicfatigue.about.com/od/copingwithfmscfs/a/10-Things-To-Stop-Doing-To-Yourself.htm

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Morning Symptoms of Fibromyalgia

Facing the First Problems of the Day

o you frequently wake up exhausted, stiff and achy, with puffiness in your hands and feet or around your eyes? These are all part of morning symptoms when you have fibromyalgia.

Not everyone with fibromyalgia experiences morning symptoms, but they are quite common. This is one of those areas medical research hasn't yet explained, so we can't say why we get them. We also don't know a lot about alleviating them, other than what we learn from each other.

http://chronicfatigue.about.com/od/symptoms/a/Morning-Symptoms-Of-Fibromyalgia.htm?nl=1

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Fibromyalgia in Men - The Often-Overlooked 10%

Fibromyalgia is often thought of as a "women's condition," but men can have it as well.

Men with fibromyalgia are definitely outnumbered -– with women making up about 90% of cases –- but that doesn't mean the diagnosis shouldn't be considered in men. After all, according to National Fibromyalgia Association estimates, that 10% could mean one million men are living with illness.

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/Fibromyalgia-In-Men.htm?nl=1

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Fibromyalgia Symptoms in Women - The Menstrual Cycle, Menopause & Pregnancy

As many as 10 million people around the world have fibromyalgia, according to the National Fibromyalgia Association. An estimated 75-90% of them are women.

That prevalence leads to the obvious question of whether sex hormones (estrogen, progesterone) are to blame. Several studies have failed to reveal any consistent abnormalities in these particular hormones in connection with fibromyalgia, but others have suggested that low estrogen levels may contribute to the development of the condition.

http://chronicfatigue.about.com/od/symptoms/a/Fibromyalgia-Symptoms-In-Women.htm?nl=1

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Tracking Your Symptoms - Keep Track for Better Treatment

It's difficult to diagnose, treat or live with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS). The symptoms are many and they can fluctuate like crazy -- one day you feel pretty good, the next you can barely walk, the next you're OK physically but just can't concentrate or communicate effectively. How can you and your doctor figure out what is going on with you?

http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/track_symptoms.htm?nl=1

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Fibromyalgia and complementary treatments

From acupuncture to chiropractic, from massage to meditation, complementary treatments are in great demand. This is especially true for people with pain-related illnesses such as fibromyalgia.

http://www.webmd.boots.com/pain-management/natural-therapies-and-alternative-treatments-for-fibromyalgia?cm_mmc_o=-uubkbzfwlCjCKww5kbELCjCvi%20i9%20niioCjCC

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High TMJ Rates in Fibromyalgia

The odds of temporomandibular joint disorder (TMJ) in fibromyalgia may be as high as 1 in 3, according to a recent study. Researchers examined 60 people with fibromyalgia for signs of the painful jaw disorder.

http://chronicfatigue.about.com/b/2012/04/02/high-tmj-rates-in-fibromyalgia.htm?_inv_out=24&_inv_cp=8085489

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Hoping to see some of you at the conference.

Best of wishes to you all for improving health

Have a lovely Easter weekend

Stella

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N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex. Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.

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.

I also include various awareness and local issues as well as general health considerations. Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.

Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.

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/

Saturday, 31 March 2012

FMSSAS eNews 12.03.31

Greetings

I had more for you this week than appears below, but sadly my computer closed down before I had saved it, so some of it got lost. There’s quite a bit left though so I’m glad all is not lost! So make the most of what there is.

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WORDz FOR THE WEEK

64. A mistake is only a mistake when you don’t learn from it. Otherwise, it’s considered a lesson.

I learnt a lesson – save more often!!

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Brain scans detect fibromyalgia!

Yes!! Finally a physical finding to say that fibromyalgia is a disease that’s not psychosomatic.

The Dr. Oz show that was aired on 3/12/12 showed a picture of a brain scan of someone with fibromyalgia. That scan showed an area down the center of the brain and across the top of the frontal cortex in a bright blue. It was explained that this area of the brain had a very low blood supply. It was also explained that this was the area of the brain that was directly connected to pain processing and emotional responses to pain. No wonder the brain doesn’t know when to shut off its pain sensors, it’s not nourished. The scan that detects these changes in brain function is called a photon emission computed tomography (SPECT) scan. It’s nice to know that brain scans detect fibromyalgia.

http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/

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New York Times – Fibromyalgia overview

Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues.

Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.

http://health.nytimes.com/health/guides/disease/fibromyalgia/overview.html?scp=1-spot&sq=fibromyalgia&st=cse

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What You Need To Know About Sleeping Pills

When your having trouble sleeping it’s tempting to reach for a sleeping pill my doctor prescribed, but is it really a good idea? The biggest problem with sleeping aids, both over-the-counter and prescription medications, is they won’t uncover the cause of sleeplessness. In fact, research shows taking both OTC and prescribed sleeping aids may make the problem worse. Here’s why:

http://www.thirdage.com/sleep/what-you-need-to-know-about-sleeping-pills?utm_medium=email&utm_source=nl___63776_thirdage&utm_content=newsstand

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Sleep disorders overview

Sleep problems, including snoring, sleep apnoea, insomnia, sleep deprivation and restless legs syndrome, affect millions of people in the UK. It's important to understand why sleep is necessary for optimal health, how the natural hormone melatonin affects sleep and wakefulness, and how the different states and stages of sleep impact our sleep quality, quantity and dreams.

http://www.webmd.boots.com/sleep-disorders/default.htm?cm_mmc_o=-uubkbzfwlCjCKww5kbELCjCvi%20i9%20niioCjCC

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Living with Pain: Helpful versus Unhelpful Social Support

All of us need social support. Your chronic pain may make you feel more needy. You may believe that you need more than your share of support… or more than your family, friends, or co-workers have to offer. At the same time, you may feel that the support that you receive isn’t always what you need, or that it makes you feel worse.

http://goalistics.com/2012/03/living-pain-power-giving-social-support/?utm_source=Living+with+Pain%3A+Helpful+versus+Unhelpful+Social+Support&utm_campaign=pain+and+support&utm_medium=email

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Changing the Conversation About Pain Survey

APF is committed to you. Help us gather more information that will allow APF to better serve you and provide information that is targeted to meet your needs.

Would you be willing to participate in an interactive website that provides more information about access to pain care, finding support in your community, proposed or existing policies that affect pain care as well as stories about you and fellow APF members?

If you are living with pain, please complete this survey by April 6, 2012.

http://www.painfoundation.org/get-involved/survey/project-change.html

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10 Spring Stress Beaters

"This is the time when birds and butterflies are migrating northward, the days are growing longer and warmer, the trees are budding, the crocuses are in bloom, and our spirits somehow feel lighter. Here, to help you celebrate, we offer 10 timely tips for embracing a less stressful lifestyle.

http://www.thirdage.com/attitude/spring-stress-beaters?utm_medium=email&utm_source=nl___63817_thirdage&utm_content=newsstand

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Next weekend I will be at the FMS conference in Chichester so I will not promise an eNews for Easter. If I have time I will send out something on Thursday, or Friday morning before I leave. I will take this opportunity to wish you all a very happy Easter, just in case!. If you have been knitting squares and if you are going to be at the conference, please bring them with you and give them to me there. I look forward to meeting up with any of you who will be attending.

Best regards

Stella

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Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.

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/

Saturday, 24 March 2012

FMSSAS eNews 12.03.24

Hello to you all

I know we desperately need rain, but I must say I have been enjoying the sunshine of late. Quite a heat wave for March! Approaching Crawley from Horsham the roadsides are banked with daffodils and they are a truly wonderful sight. Today I noticed trees and hedges were showing embryonic leaves. It makes one feel ALIVE!

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WORDz FOR THE WEEK

63. Life is about change; sometimes it’s painful, sometimes it’s beautiful, most of the time . . . . it’s both.

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Kelly’s Kontributions

CFS, FM, ME 'Seasons of Hope' Awareness Postcards

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203a&L=co-cure&F=&S=&P=6725

"Fighting Fatigue"

Fatigue can have multiple causes. Learn how to fight back using a combination of strategies.

http://www.cfidsselfhelp.org/library/fighting-fatigue

"Using CBT: A Success Story"

How one person used Cognitive Behavioral Therapy to treat Chronic Fatigue Syndrome.

http://www.cfidsselfhelp.org/library/using-cbt-a-success-story

Clinical dimensions of fibromyalgia symptoms and development of a combined index of severity: The CODI index.

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=co-cure;45539708.1203a

Predictors of Clinical Pain in Fibromyalgia: Examining the Role of Sleep

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203a&L=co-cure&F=&S=&P=15779

Prevalence of Fibromyalgia Syndrome in Patients Referred to a Tertiary Pain Clinic

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203a&L=co-cure&F=&S=&P=19907

Restrictions in participation in women with fibromyalgia syndrome : An explorative pilot study

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203a&L=co-cure&F=&S=&P=19108

A mind-body technique for symptoms related to fibromyalgia and chronic fatigue

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203b&L=co-cure&F=&S=&P=6360

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The New Normal: Moving Beyond Illness

Find out how one woman found peace after a debilitating diagnosis – fibromyalgia.

http://www.womansday.com/health-fitness/conditions-diseases/moving-beyond-illness

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Skin Creams, Soaps and Lotions Marketed as Skin Lighteners and Anti-aging Treatments: May Contain the Toxic Metal, Mercury

Just in case!

A warning has been issued not to use skin creams, beauty and antiseptic soaps, or lotions that might contain mercury. The products are marketed as skin lighteners and anti-aging treatments that remove age spots, freckles, blemishes and wrinkles. Adolescents also may use these products as acne treatments. Products with this toxic metal have been found in at least seven states.

http://www.drugs.com/fda/skin-creams-soaps-lotions-marketed-skin-lighteners-anti-aging-treatments-may-contain-toxic-metal-13102.html

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Fibro Treatment

The most effective treatment approaches for fibromyalgia symptoms use a combination of medications, non-drug therapies, and self-help strategies when you hurt all over. Three medications are FDA-approved for relieving fibromyalgia pain (Lyrica, Cymbalta and Savella). Others may be prescribed in place of or together with one of these drugs to ease your many symptoms. Non-drug treatment approaches usually reduce achy muscles with trigger point therapies and enhance your ability to function. Some are viewed as mainstream, while others may be considered alternative therapies. Due to the significant impact fibromyalgia may have on your daily activities, simple lifestyle changes or self-help strategies can build upon your treatment success.

http://www.fmnetnews.com/fibro-basics/treatment

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A Pain Management Tool for People With Fibromyalgia

An interactive tool to help you create a detailed picture of your pain providing a lot of important information fast, so you and your health care provider can move on to addressing your issues more quickly.

This Tool Recommended for:

Patients diagnosed with Fibromyalgia

Printing a detailed snapshot of Fibromyalgia pain

http://theacpa.org/fibroapp/default.aspx

Move on to the Fibro Log. Keep a record of how you feel each day

Your pain and other fibromyalgia symptoms can fluctuate day to day, so it is important to communicate regularly with your health care provider and make the most of each appointment.

http://theacpa.org/fibroLog/default.aspx

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Mayo trial finds strength & aerobic exercise help fibromyalgia pain equally

Strength training and aerobic exercise have beneficial effects on pain in adults with fibromyalgia. However, the equivalence of strengthening and aerobic exercise has not been reported.

http://www.prohealth.com/library/showarticle.cfm?libid=16843

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Pain Monitor - March 2012

‘Welcome to a new version of Pain Monitor – here you’ll find articles on living with chronic pain, the latest pain news, events, and much more. We hope you or a loved one finds this information helpful in living a better life with pain. Please help us improve this publication by completing the survey highlighted in every issue.’

http://www.painfoundation.org/learn/publications/pain-monitor/pain-monitor-201203.html

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Offer for Pet Owners over 65

Thanks to a grant made by The Body Shop Foundation, Wadars have launched a new free scheme to help keep pets safe. The scheme offers a completely free pet micro chipping service for anyone over the age of 65 who live in the Littlehampton, Arundel, Pulborough, Worthing, Lancing and Shoreham areas.

http://www.worthingcvs.org.uk/news/new-free-scheme-help-keep-pets-safe

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10 Ways to Tell if You Have Fibromyalgia or Chronic Fatigue Syndrome?

A lighthearted look at the symptoms!

http://www.facebook.com/notes/fibromyalgia-network/10-ways-to-tell-if-you-have-fibromyalgia-or-chronic-fatigue-syndrome/167990669891637

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Invisible Illnesses

http://earthbalance-taichi.com/2012/03/invisible-illnesses/

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Personality & Physiology in Fibromyalgia: A New Discovery

Fibromyalgia has long been tied to certain personality traits, both by the medical community and by some in the patient community. However, this observation has always been controversial, with many objecting that such stereotyping was erroneous and blamed non-physiological traits for a physiological illness.

Now, new research may resolve the controversy by tying both fibromyalgia AND a personality trait to a physiological root.

http://chronicfatigue.about.com/b/2012/03/19/personality-physiology-in-fibromyalgia-a-new-discovery.htm

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PatientsLikeMe Newsletter Issue 15 - March 2012 - MONTHLY MUSINGS

Flare. Exacerbation. Attack. Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however. This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more. Just check out all the threads tagged with either “flares” or “relapses” across the forum.

http://www.patientslikeme.com/newsletters/272--Mar-2012

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Some courses that might be helpful

Sussex - Time to Talk service for Cognitive Behavioural Therapy ( Positive thinking) http://www.sussexcommunity.nhs.uk/index.cfm?request=b1003022&action=showServiceDetail&service=331&skin=

If you are on the Time to Talk program you will also be eligible for courses for adults dealing with mental health issues, with West Sussex adult education

http://www.westsussex.gov.uk/default.aspx

Expert Patient Program, various venues

http://www.expertpatients.co.uk/

St Thomas Hospital, London INPUT Program for people dealing with long term chronic pain

http://www.guysandstthomas.nhs.uk/services/perioperative/pain/input/inputpain.aspx

Get self help, useful fact sheets

http://www.getselfhelp.co.uk/

Centre for clinical Interventions (CBT)

http://www.cci.health.wa.gov.au/

Living Life to the Full, an online course in cognitive behavioural therapy

http://www.llttf.com/

MOODJUICE, self help guides for coping strategies

http://www.moodjuice.scot.nhs.uk/

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Alternative Approaches to Chronic Pain Management and Freedom from Suffering

Dr. Stephen Grinstead discusses the importance of using alternative nonpharmacological (non-medication) based ways to manage chronic pain; especially for pain flare ups. He also talks about the importance of setting realistic goals for pain management. Some of the alternatives mentioned are humour, music, art and gratitude to name a few.

https://www.youtube.com/watch?v=ab2nVpIvudk&feature=player_embedded#!