Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK

Autonomic Dysfunction Sheet (PoTS) Article / Paper by: Dr Alan Hakim MA FRCP, Hospital of St John and St Elizabeth, London. Professor Rodney Grahame CBE MD FRCP FACP, Hospital of St John and St Elizabeth, London. Originally posted http://www.ehlers-danlos.org http://www.ehlers-danlos.org | about EDS – medical information | Autonomic Dysfunction This post is not aimed at everyone… Read More Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK

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THE BOWEN TECHNIQUE FOR PAIN RELIEF IN FIBROMYALGIA AND BACK PAIN…

Originally posted on BACK PAIN BLOG UK…:
The Bowen Technique has now joined the group of complementary therapies to be recognised by the Complementary and Natural Healthcare Council (CNHC) which provides an independent national standard of excellence. CNHC is the only voluntary regulatory body for complementary healthcare to have official backing from the government. Its…

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May12th |Fundraising – FibroFlutters 4 FMAUK

Hi everyone Please can you help FibroFlutters with our May12th Fibromyalgia Awareness Campaign and help to #fightfibro? I have setup this Just Giving fundraising page in honour of International Fibromyalgia Awareness Day May 12th 2017 on behalf of my Support Group FibroFlutters that I grew with Co-Founding member Vicky Green & our other Founding members… Read More May12th |Fundraising – FibroFlutters 4 FMAUK

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Hydrotherapy – Heaven or hell? Part Four – Week Four starting 22/02/2017

Hydrotherapy – Heaven or Hell?  Part Four ~ week Four starting 22/02/2017 Okay, there wasn’t a hydrotherapy session this week due to pool-cleaning but I have still recorded my pain and fatigue levels for the week. I am going to be bluntly honest and tell you all that I have been insanely distracted by the… Read More Hydrotherapy – Heaven or hell? Part Four – Week Four starting 22/02/2017

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FIBROMYALGIA AND ULNA NERVE ENTRAPMENT – ARE THEY CONNECTED?…  |  Back Pain Blog UK

Interesting read by a fellow Spoonie Blogger, and something that has left me wondering about Ulna nerve entrapment because I have these same symptom/problems, plus a collagen disorder, and Fibromyalgia 😮     Source: FIBROMYALGIA AND ULNA NERVE ENTRAPMENT – ARE THEY CONNECTED?… HOME PAGE –  Back Pain Blog UK Spoonie Talk is a section… Read More FIBROMYALGIA AND ULNA NERVE ENTRAPMENT – ARE THEY CONNECTED?…  |  Back Pain Blog UK

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Hydrotherapy – Heaven or hell? Part Three – sessions/weeks two & three

Hydrotherapy – Heaven or hell? Part Two – Part Three – sessions/weeks two & three  starting  08/02/2017 Okay, for those of you that know my story and know me well… you know and understand the distractions that I have had going on recently surrounding my PIP beneifit claim.  It is because of those distractions that… Read More Hydrotherapy – Heaven or hell? Part Three – sessions/weeks two & three

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Medical News | An Update on ME/CFS Research with Dr. Ronald W. Davis

ME/CFS research update by Dr Ronald W. Davis in association with the Open Medicine Foundation  (OMF). Dr Ronald W. Davis, PhD, is the OMF’s Scientific Advisory Board director and in addition to leading Open Medicine Foundation’s research team, Ronald W. Davis, PhD, is a professor of Biochemistry and Genetics. He is also the director of… Read More Medical News | An Update on ME/CFS Research with Dr. Ronald W. Davis

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PETITION to UK Parliament > Make Fibromyalgia a disability | originated by Adrienne Lakin

I’m a sufferer myself alongside many others where I live and my group members need this change as much as I do. That is why I signed this petition >>>  Carole Sian Scrafton Will you join in the fight for fibro to be recognised by the UK Government as a disabling condition, rather than ‘an… Read More PETITION to UK Parliament > Make Fibromyalgia a disability | originated by Adrienne Lakin

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Hydrotherapy – Heaven or hell? Part Two – session one / week one

Hydrotherapy – heaven or hell?  is a discussion that I have often read in other blogger’s pages, online support groups and also physically discussed with other people just like me who live life with chronic pain, hypermobility and chronic illness, within my own support group FibroFlutters.  For me it is something that I am still… Read More Hydrotherapy – Heaven or hell? Part Two – session one / week one

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Do you have Fibromyalgia? Which of these sensitivities causes you the most discomfort?

UPDATED POLL – Do you have Fibromyalgia? Which of these sensitivities causes you the most discomfort? A topic that many of us familiarise with in varying ways such as temperature, touch, pain, smell, taste, or hearing just to name a few.  No two Fibromites are the same though!, as we are all affected differently in differing… Read More Do you have Fibromyalgia? Which of these sensitivities causes you the most discomfort?

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Hydrotherapy – heaven or hell? Part one

Hydrotherapy – heaven or hell?  is a discussion that I have often read in other blogger’s pages, online support groups and also physically discussed with other people just like me who live life with chronic pain, hypermobility and chronic illness, within my own support group FibroFlutters.  For me it is something that I am still… Read More Hydrotherapy – heaven or hell? Part one

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Blogger Tips by BACK PAIN BLOG UK | MY TOP 20+ TIPS ON HOW TO MANAGE YOUR FIBROMYALGIA…

I have read this blogpost as a fellow spoonie and think it may hold useful tips for everyone with fibromyalgia so I am pressing / sharing these tips with you.   BACK PAIN BLOG UK | MY TOP 20+ TIPS ON HOW TO MANAGE YOUR FIBROMYALGIA… 1. Rest, rest and more rest, every little helps to… Read More Blogger Tips by BACK PAIN BLOG UK | MY TOP 20+ TIPS ON HOW TO MANAGE YOUR FIBROMYALGIA…

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Patient | Causes and treatments of Irritable Bowel Syndrome (IBS) – video | Dr Sarah Jarvis

Do you have Irritable Bowel Syndrome (IBS)? #chronicillness Dr Sarah Jarvis discusses and explains the causes and treatments in this video courtesy of Patient via: http://www.youtube.com ~ Patient Once there on the site you will also find info & links for IBS Patient forum and many other useful links too.  🙂 I hope this is… Read More Patient | Causes and treatments of Irritable Bowel Syndrome (IBS) – video | Dr Sarah Jarvis

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Petition | Get Hyperbaric Oxygen Therapy (HBOT) on the NHS for Fibromyalgia sufferers.

Do you suffer with fibromyalgia and find it difficult to find a treatment to help ease your everyday chronic pain? Maybe Hyperbaric Oxygen therapy could help you… … only problem with that is that is doesn’t come cheaply and there aren’t too many places which offer this service. If the Government recognised that it is… Read More Petition | Get Hyperbaric Oxygen Therapy (HBOT) on the NHS for Fibromyalgia sufferers.

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SPOONIE TALK | A Letter to My Ehlers-Danlos Syndrome | The Mighty

Chronic Illness writer, and contributer to The Mighty, Lauren King writes a letter to her chronic illness, EDS expressing her gladness at finally being introduced…. Opening Lines ‘To my chronic illness, from the person who is glad to finally know your name. Dear Ehlers-Danlos Syndrome, Oh, hi there. I didn’t notice you for 25 plus years.… Read More SPOONIE TALK | A Letter to My Ehlers-Danlos Syndrome | The Mighty

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Product Review | Nrem Sleep System | Sponsored Post

Do you find it difficult to get comfortable when trying to sleep?  I do, and for a variety of reasons connected to my Arthralgia, Fibromyalgia and Joint Hypermobility Syndrome.   When asked if ‘d like to try a ‘mattress topper’ sleep system for ‘Nrem’ via Chronic Illness Bloggers Network, I thought ‘why not?!’ it may… Read More Product Review | Nrem Sleep System | Sponsored Post

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Fibromyalgia – What’s that? Find out where to find relevant information

Fibromyalgia – What’s that? In my own words…. Fibromyalgia is an undetermined Chronic Pain Disorder made up of a variety of physical, mental, and, nerve type symptoms, and its sufferers are in constant pain even when they’re smiling at you 🙂 We endure a combination of symptoms and illnesses not just chronic pain and these… Read More Fibromyalgia – What’s that? Find out where to find relevant information

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SPOONIE TALK | My Diagnosis and Treatment for Psoriasis | The Mighty

To those who are quick to judge those with Psoriasis Opening Lines I’m not making this post for likes, for sympathy, or for any reason to benefit myself personally. I ache, burn, itch and am in pain. I cry, complain and have asked myself “Why me?” more times than I can count. While I can… Read More SPOONIE TALK | My Diagnosis and Treatment for Psoriasis | The Mighty

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Migraine Again | Why Painful Light Sensitivity Affects Many with Migraines

Do you have problems with light sensitivity? I was diagnosed at 16 with light sensitivity and then I had the realisation, as an adult later in life, that it was the cause behind my headaches whilst I was at school.  It’s amazing really the things we figure out 5/10/15/20 years later after being  diagnosed, or… Read More Migraine Again | Why Painful Light Sensitivity Affects Many with Migraines

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Fibromyalgia, Essential Oils, and You | Fibromyalgia news Today | Robin Dix

Do you use essential oils?  I do and have done for many year now, and I have devloped my own oil blends / recipes for varying things over the years, including blends which were multi-purpose… for economical reasons when money was tight and I couldn’afford to mix multiple bottles of oils. This is a great… Read More Fibromyalgia, Essential Oils, and You | Fibromyalgia news Today | Robin Dix

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How To Handle A Fibromyalgia Flare Up: 5 Tips | February Stars

Chronic Illness Blogger Donna discusses five different ways that you could use to help you handle your Fibromyalgia flare-up. via How To Handle A Fibromyalgia Flare Up: 5 Tips | February Stars A useful read #Fibro but also for other #chronicpain type Flare-ups 🙂 There are many more helpful and fab reads about life and… Read More How To Handle A Fibromyalgia Flare Up: 5 Tips | February Stars

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September is Pain Awareness Month

There are going to be many campaigns during September and October for Pain and Chronic Illness Awareness from a whole variety of organisations, and charities, for many differing illness / diseases / disorders that cause chronic constant pain. In honour of International Fibromyalgia Awareness Week and Pain Awareness Month this post will focus on Fibromyalgia… Read More September is Pain Awareness Month

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Home News | FibroFlutters Information Poster

Find out more about FMAUK  via http://www.fmauk.org  and here on this CAMPAIGN post by FibroFlutters fibroflutters.com/2016/05/12 | fmauk fighting for the freedom from fibromyalgia Sunderland Mind Centre can be found via http://www.sunderlandmind.co.uk Alternatively you can give them a call for confidential support and advice via these numbers:   0191 5657218, or, 07961064117 Or, drop by the… Read More Home News | FibroFlutters Information Poster

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Feeling blue? Hugs of fluffiness on route to you | Fluffmeister

When I feel blue or in lots of pain I surround myself in purple fluffiness and get onto my very non-moving, virtual of course, purple fluffy couch and submerge myself into the softness until I feel safe, warm and not in as much pain, or, sadness.  Whilst I’m there I also, occassionally, indulge in the… Read More Feeling blue? Hugs of fluffiness on route to you | Fluffmeister

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What is Neuroinflamation? | Video via YouTube| Dr Jarred Younger / Younger Lab (YouTube channel)

Okay, so people with chronic illness talk about inflammation all the time, but, you don’t get to hear about, ‘neuro-inflammation’, and what it actually is when you’re down the town and bump into your mates, and then go and have a discussion about it.  I suppose that will be because it isn’t a trending subject… Read More What is Neuroinflamation? | Video via YouTube| Dr Jarred Younger / Younger Lab (YouTube channel)

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Thinking about trying something complementary here are the ‘Ten Must Have Basic Essential Oils’ | your-aromatherapy-guide.com

Are you living with chronic illness such as Fibromyalgia, EDS/JHS/HMS, CFS/ME, Anxiety/Depression, and, are thinking about trying a complementary approach to enhance your treatment, such as using essential oils, and would like to know about them first?(always a good idea!)  then the link below may be useful to you.   Here are the Ten Must… Read More Thinking about trying something complementary here are the ‘Ten Must Have Basic Essential Oils’ | your-aromatherapy-guide.com

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Spoonie talk – What came first? Your pain?, or, your depression? | by Fibrofly73

After reading the study, ‘Impact of Pain on Suicidal Thoughts and Behaviors‘ via EDS Info (Ehlers-Danlos Syndrome)‘, my brain began to slowly remind me of my past and the very long battle that I endured regarding my pain versus my mental health. The persistent lack of understanding and being made to feel like I was… Read More Spoonie talk – What came first? Your pain?, or, your depression? | by Fibrofly73

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Article & Recipe: Raw Chocolate Coconut Balls Recipe | Michelle Toole – Healthy Holistic Living

Food & recipes An excellent recipe with an educational discussion about cacao, which I have previously shared through other social media but they look so fantastic and easy to make. I think these would be great during the festive season   🙂 Article & Recipe Titled:-  Benefits of These Raw Chocolate Coconut Balls The article… Read More Article & Recipe: Raw Chocolate Coconut Balls Recipe | Michelle Toole – Healthy Holistic Living

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NHS Choices: Ten ways to fight your fears – Stress, anxiety and depression – NHS Choices

The following information document/article is from NHS Choices and discusses how we can combat our day-to-day stress, anxiety and depression. This article may help you to develop a ‘Coping Strategy’ for dealing with your mental health issues hat you can keep and refer to at all times.   When things start to get tougher or… Read More NHS Choices: Ten ways to fight your fears – Stress, anxiety and depression – NHS Choices

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How does Chronic Illness / Pain affect your Sleeping Habits

Having a Chronic Illness that causes severe pain means we often develop other conditions as a result of the Chronic Pain.  Sleeping problems appear to be high on the list of those ‘other‘ condtions that we are susceptible of developing, alongside CFS/ME, Anxiety, Depression and Stress, all of which, also, affect sleeping habits. When we’re… Read More How does Chronic Illness / Pain affect your Sleeping Habits

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Accepting ‘Chronic Illness’ Including > Article: Acceptance of Fibromyalgia by Adrienne Dellwo

Accepting Chronic Illness – Fibromyalgia / Chronic Pain / Chronic Fatigue Syndrome / ME / EDS/HMS / MS / Anxiety / Depression / IBS / Invisible Illness Including > Article: Acceptance of Fibromyalgia by Adrienne Dellwo, a Chronic Fatigue & Fibromyalgia Expert. Accepting any of the above mentioned #chronicillness / #invisibleillness can be a difficult… Read More Accepting ‘Chronic Illness’ Including > Article: Acceptance of Fibromyalgia by Adrienne Dellwo

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Health, Welfare & Social Care advice / information UK: ‘Keep Warm Keep Well’ leaflet – Publications – GOV.UK

The following link will take you to the GovUK website and an information leaflet about keeping warm and keeping well. Title:   Keep Warm Keep Well: Information for over 60s, low-income families and people living with a disability Ref: PHE publications gateway number: 2015372 PDF, 329KB, 28 pages Link via:   ‘Keep Warm Keep Well’ leaflet… Read More Health, Welfare & Social Care advice / information UK: ‘Keep Warm Keep Well’ leaflet – Publications – GOV.UK

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Info site – Ehlers Danlos UK: Hypermobility Ehlers-Danlos syndrome

Do have EDS or any other hypermobility syndrome? Are you unsure about what the condition is or whether you may have it or not? Would you like to know more about it?, for instance one of the main questions often asked… … Why the Zebra? The following link takes you to the charity website of… Read More Info site – Ehlers Danlos UK: Hypermobility Ehlers-Danlos syndrome

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Article from Arthritis-health: How Chronic Pain May Sap Your Motivation

This article is with reference to Rheumatoid Arthritis but in my own opinion it could easily be applied to many other illnesses such as Fibromyalgia, Hypermobility, EDS, MS and many other Invisible Ilnesses which involve Chronic Pain. The opening lines of this short article explain the sequence of the basics: pain > tired > depressed… Read More Article from Arthritis-health: How Chronic Pain May Sap Your Motivation

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Campaign – Avon – Speaking Out Against Domestic Violence — Invisible Illnesses

Originally posted on Avon 365: Speak Out Against Domestic Violence Domestic violence is an epidemic: one in four women worldwide will be a victim of domestic abuse in her lifetime. It does not discriminate and it can affect anyone, regardless of income, race, ethnicity, sexual orientation, or religion. What’s more, domestic violence has historically been… Read More Campaign – Avon – Speaking Out Against Domestic Violence — Invisible Illnesses

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Hyperparathyroidism Sometimes Misdiagnosed as Fibromyalgia | edsinfo.wordpress.com

Originally posted on EDS and Chronic Pain News & Info:
Is Hyperparathyroidism Sometimes Misdiagnosed as Fibromyalgia? – July 2014 Editor’s Comment: A new study presented at the American Association of Endocrine Surgeons 2014 Annual Meeting suggests that a subset of patients diagnosed with fibromyalgia may actually have unrecognized hyperparathyroidism. The two illnesses have a number of…

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