Fibromyalgia

The Difference Between ‘Rest’ And ‘Bad’ Days For My Chronic Illness

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    By Amy Saunders in The Mighty.   Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill. You can have days when you feel on top of the world […]

If Your Chronic Illness Is Making You Want to Give Up

Frustration Chronic Illness

  By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]

Migraines And Other Headaches In Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

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  By Brent Wells in Health Rising.   If you’ve ever suffered from any type of headache, you know that there is nothing funny about them. However, because migraines and headaches are not fatal and often do not result in permanent disability for most, their importance to public health has long been understated. This is […]

5 Reasons We Should Never Assume Someone Isn’t In Pain

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      By Christina Carrell in The Mighty.   I was sitting in one of those canvas painting classes, waving a paintbrush back and forth in a very amateur attempt to recreate Monet’s “Bridge Over a Pond of Water Lillies” (spoiler: I’m not an artist and the end result bore little resemblance to the […]

15 Things People With Chronic Illness Mean When They Say ‘I Don’t Feel Good’

Frustration Chronic Illness

  By Veronica Vivona in The Mighty.   Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]

Extra Costs With A Disability

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  From Scope.   Life costs more for disabled people and their families. Spending more on essential goods and services like; heating, insurance, equipment and therapies. These extra costs mean disabled people have less money in their pocket than non-disabled people, or simply go without. Therefore, disabled people are likely to have a lower standard […]

Experimental Blood Test Accurately Spots Fibromyalgia

Blood Test

  By Misti Crane in Ohio Stae News.   For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis. In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success […]

Which Painkiller ?

Painkillers

  From NHS Choices.   The type of medicines that you need to treat your pain depend on what type of pain you have. For pain associated with inflammation, such as back pain or headaches, paracetamol and anti-inflammatory painkillers work best. If the pain is caused by sensitive or damaged nerves, as is the case with shingles or sciatica, it’s usually treated with tablets that […]

Why People With Chronic Illness Can’t Simply ‘Push Through’

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  By Alicia Thompson in The Mighty.   It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean […]

Some Claims That London 2012 Changed The World Are Nonsense, Says Disabled Peer

Disability Dice

  By John Pring in Disability News Service.   One of Britain’s greatest Paralympians has told a parliamentary meeting to beware of claims that London 2012 “changed the world” for disabled people. Baroness [Tanni] Grey-Thompson (pictured) was speaking at a parliamentary meeting held to discuss the need for more to be done to enable disabled […]

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

Invisible Illness

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

Using A Cane With An Invisible Disability

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  By Kit O’Connell in Approximately 8,000 Words Blog.   I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia). Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss […]

Why I Gave Up Trying To Be The ‘Good Patient’

Chronic

    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Pt I – The Brainstem Series

Cort_Johnson

    By Cort Johnson in Health Rising.   Jeff had a typical ME/CFS onset: he was a young, healthy and active individual before being felled by a viral infection and a high temperature. The infection left him with headaches, dizziness, muscle weakness and pain, sound and light sensitivity, and a general sense of being […]

Allodynia: A Rare, Distinct Type Of Pain In Fibromyalgia And ME/CFS

Chronic Pain

    By Adrienne Dellwo in Very Well Health.   Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]

Government Is Failing On Disabled Women’s Rights, UN Is Told

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    By John Pring in Disability News Service.   Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services. Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were […]

Wheelchair Friendly Walks In Yorkshire

traveling-in-a-wheelchair

    From Fenetic Wellbeing.   Can you remember a sunny bank holiday? Us neither. But on the off-chance the heavens don’t open, we’ve put our heads together and come up with some cracking wheelchair friendly spots for a day out in Yorkshire. Can you remember a sunny bank holiday? Us neither. But on the […]

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not To Work Full-Time

Chronic Illness

  By Alexandra Ellen in The Mighty.   Have you ever had the “joy” of experiencing a conversation similar to this on a Sunday afternoon? “What time do you start work tomorrow?” “Ummm, I don’t work on Mondays.” “Ahhh, you’re so lucky!” I lost count of the number of times I’ve had similar conversations. I […]

People With Rare Diseases Get ‘Unequal Treatment’ From ‘Inflexible’ NHS Drug Regulator, Warns Report Calling For System Reform

NHS

    By Vanessa Chalmers in The Daily Mail.   The NHS drug regulator has been branded ‘inflexible’ when it comes to approving medicines for rare diseases in a report calling for it to be reformed. The National Institute for Health and Care Excellence (NICE) gives guidance on how to improve health care, including advising on how […]

Trial By Error: The Cost Of MUS

David Tuller

    By David Tuller, DrPH In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general […]

Enhancing Blood Volume In Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia

Blood Test

    From Health Rising.   “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas.   The low blood volume finding in chronic […]

We Need To Stop Talking About Chronic Illness In This Particular Way

chronic-illness

  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

14 Things People May Not Realize We Do Because Of Sudden Flare-Ups

chronic

  By Cassidy Colbert in The Mighty.   Living life with a chronic illness is basically living life constantly walking on eggshells. One day you may be bouncing off the walls because you are so full of energy and the next you are lying on the cool bathroom floor — your only source of relief from the agonizing […]

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

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By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

Disability-Themed Emojis Coming To Smartphones This Year

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    By Cristina Abellan Matamoros in euronews.   Disability-themed emojis will be the biggest addition to this year’s new batch of approved emojis. The new accessibility emojis were introduced after Apple proposed adding emojis of a guide dog, a hearing aid, prosthetic limbs and people using canes and in wheelchairs back in 2018. Apple had criticised the lack […]

The Discrimination I Experience As A Young Person With Invisible Illness

Invisible Illness

  By Nora W in The Mighty.   There are thousands of chronic illnesses and even more people who have chronic illnesses. It’s hard for most people to believe, but yes, young people have various chronic illnesses too. I cannot tell you how many times I have told somebody I have a chronic illness and the response I […]

Invisible Or Visible: There’s No Wrong Choice

Lisa

  By Lisa Alloto in Chronic illness: Realistic Optimism Blog.   Depending on the situation or who we are interacting with, we may portray ourselves in different ways.   We often strive to be the person we need to be to achieve optimal success in the moment. In some situations, we may find ourselves to […]

Going Back in Time…

golden-spiral

    From Spoonseeker.com Blog.   When the ‘Guidelines for Commissioners of Services with Medically Unexplained Symptoms‘ document was first published a year or so ago, there were those in the Science for ME forum who were sceptical about whether the project was viable. Prof Jonathan Edwards commented: “I actually think this guidance will fall completely […]

DWP Refuses To Reveal Police Forces That Share Information On Disabled Protesters

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By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) is refusing to say which police forces have passed it video footage and other information about claimants of disability benefits who have taken part in anti-fracking and anti-austerity protests. DWP’s attempt to hide its links with police forces has caused […]

The Guilt Of Prioritizing Yourself When You’re Chronically Sick

Frustration Chronic Illness

    By Meridith O’Connor in The Mighty.   I’m in a constant state of risk, using my energy towards something with the potential to cost me other life events later. It’s a difficult balance, knowing when to push through and feel sick later, or prevent the latter by taking precautionary care of myself first. Everyone always […]

Universal Credit Is An Unmitigated Catastrophe For Ill And Disabled People

DWP Caxton House

      Written by Kitty S Jones in Politics and Insights.    I co-run an online advice and support group for people going through Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) claims, assessments, mandatory reviews and appeals. Recently there has been a spike in people being reassessed for their awards of both kinds of […]

Response To Vitamin B12 And Folic Acid in Myalgic Encephalomyelitis And Fibromyalgia

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    By Björn Regland, Sara Forsmark, et al in PLos ONE.   Abstract Background Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may […]

The Best, Most, Biggest And Least Of 2018 In Chronic Fatigue Syndrome And Fibromyalgia

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  By Cort Johnson in Health Rising.   The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]

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