ME/CFS & Fibromyalgia Around the Web

Allergies! Oh My!

Random sneezing fits for 3 days straight, itchy watery eyes, runny nose, congestion; it must be allergy season.  Unfortunately, it seems like for some of us with Fibro, allergy season is EVERY season.  After multiple random 3 day sneezing fits I finally called my doctor.  The truth is a stored up a few things to go visit him about (because, like most of you, I spend enough time in the Dr.’s office, so I don’t want to go when I don’t feel like I have to).  I’d run out of the nasal mist he’d given me samples of, and I’m at the point where I’m tired of so many drugs with so little results, so I went.

Counting My Spoons

Meditation – Get It Right

Every now and then I receive emails with questions about various topics that I’ve discussed on the Health and Wellness Show. Lately, I have received quite a number of emails that have a similar inquiry – Meditation.  Does it seem like everyone else who meditates and talks about the benefits have it together? Well, the truth is, I talk about meditation and how great it is. However, it took me quite some time to get it right – well, I am actually a work in progress.

Solutions Health & Wellness

Surrendering

One word. Surrender. This was one word flashed on the screen of Oprah’s second part of her personal Master Class. It resonated. I am a fighter, always have been, always have had to be. From earliest memory, I had to fight within the life I was living. I fought against the struggles that existed in my home life, my family life and life those two things created in all areas from friends to struggling in school. Things that happened in this past week brought all the struggles to the surface. There was emails, old photos, even old report cards that were painful reminders of the struggles from my early life…mixing with the struggles I dealt with during my early adult years, and the most recent ones of the last couple of years.

Ruby’s Musings

Comment on the statement by Sir Peter Spencer of Action for ME

Attention has been drawn on Co-Cure to the comments of Sir Peter Spencer, CEO of the charity Action for ME, about the PACE Trial (Co-Cure NOT: AfME Policy group strategy in response to PACE; 19th April 2011).  In Action for ME’s Policy group strategy in response to the PACE Trial (5th March 2011), Sir Peter Spencer stated: “The PACE trial would have gone ahead in any event, with or without Action for M.E’s participation”.

Support Can Come From The Least Expected Places

As a person with Fibromyalgia, fitting into the world at large can be a bit difficult. Not enough energy, too much pain. Fatigue and exhaustion interrupting each attempt at lighthearted conversation. It is no wonder we are all so happy to have found each other! Finally, typeo’s and misspellings are not judged, if it takes someone a day or two to get back to us, we understand. When we say LMA, a whole buncha folks intrinsically know what you mean. But sometimes a simple gesture of support from the least expected place can have a huge impact.

Chronicles of Fibromyalgia

Avoid slipping in puddles of pseudoscience i.e. the PACE trial, a tub of bad information
The Internet has become a major source of medical information for millions of us as we wonder what might be causing our headache, what to do about our child’s hyperactivity, whether we should be worried about that mole or not, whether homebirth is safer than hospital birth. We Google cures for cancer, silver bullet weight loss strategies, treatments for autism and risks associated with vaccines.

THE NICEGUIDELINES BLOG

Blog Carnival #27 – Causes I Stand Up For

For this carnival, we asked y’all to tell us about the causes close to your heart, and you didn’t disappoint. We learned about some incredible causes and organizations! Check out these inspiring posts and you’ll learn about some great people and organizations doing wonderful work, some of whom could use your support. We can’t do it alone!

Chronic Babe

The Media and ME by Margaret Williams

Ever since the foundation of the UK Science Media Centre in 1999 whose purpose is to ensure that the media deliver only headline science stories that accord with Government policies the reporting of the biomedical science surrounding ME/CFS has been noticeable by its absence. Instead, there has been a wealth of spin promoting the benefits and success of CBT and GET for every disorder imaginable, including ME/CFS.

Dancing with the Sandman

When Life Gets Busy: 3 Tips for Combatting Busy-Ness

What do you do when life gets busy? Do you get caught up in the busy-ness and feel overwhelming stress?  Some people do get caught up in the busy-ness whirlwind and lose their way. Maybe, lose their balance is a better description. Whether you’re talking about life issues or health issues (e.g. recovering from Fibromyalgia, CFS, ME/CFS, Arthritis, Lupus, Lyme, RSD, etc.) or what, the process is pretty much the same.

Health Matters Show

Mayo Clinic Follow-up: Side-tracked by Side Effects

If you have been following along with my Mayo Clinic story, you know that I have been having one heck of a time with a new beta-blocker prescribed by my new neurologist.  Well, last week I finally decided to throw in the towel after I read this post over at ChronicBabe.com and realized that taking Inderal (propranolol) was causing this side-effect too. I am so glad that Jenni wrote this post and clued me in to this! I also really feel there needs to be more discussion about the sexual side-effects women experience from medications like beta-blockers and antidepressants.

Oh My Aches & Pains

God Is the Best Heart Monitor

Once again, God has me nestled in a place where I am forced to rely on Him. I can’t escape the fact that for the next 30 days, someone is watching little heartbeat spikes that are transmitted electronically and examined for problems. My confession? I’m scared.  You see, I’ve always been afraid of the sound of a heartbeat. From walking through a giant heart at a museum in Chicago that “thump-thumps” realistically, to reading Edgar Allen Poe’s “The Tell Tale Heart,” I have dreaded that sound.

Chronic Illness Pain Daily Devotionals

Author Interview: Living a Meaningful Life Despite Chronic Illness

I recently had the blessed experience of chatting briefly with Sherry Boettcher author of “Living a Meaningful Life” She has had such a good response from her readers, as well as many testimonials that inspire others to read and share her book.  “I want to offer hope to others, because I know what it is like to be sick, tired, and in pain, and I would want others to do the same for me. Please know that writing is hard for me, like emails etc., but I enjoy encouraging others on the phone when ever possible.”

Rest Ministries

My testimony for CFSAC

Yesterday was the deadline for submitting testimony for the upcoming May 11 CFS Advisory Committee (CFSAC) meeting hosted by the National Institutes of Health (NIH).  You may recall that we are planning a big awareness event, Speak Up for ME!, for kids, teens, and young adults with ME/CFS at the meeting, so I focused my own testimony on my kids.  This is a bit too long for my family’s 5-minute speaking slot, so I’ll have to edit it down before presenting it at the meeting, but I wanted to submit the complete testimony in writing.
 
 

Migraine Medications 101:  Triptans

Most people who visit doctors about their migraine attacks will be prescribed a medication in the triptan family. Triptans are a category of medications developed to abort migraine attacks (rather than simply dulling the symptoms of the attack). For many people they are highly effective with few side effects.  Examples of triptans include Imitrex, Frova, Maxalt, Replax, etc. In addition to the more common pill form, a number of these medications can be prescribed in other forms that work faster by bypassing the stomach, such as injection, nasal spray and needle-free injection.

Somebody Heal Me

Responding to a Dr.’s ME Ignorance and Arrogance

For me, writing helps me to process my daily challenges and sort things out. Today, was no different when a third tooth broke and I am still confronted with a severe relapse (currently functioning at 10% energy levels).  So….I decided to do some ME research and came across a comment that I just could not ignore at the Irish Medical Times. For me, this was my line in the sand. Enough is enough.

4 Walls & A View

Facing Surgery With Fibromyalgia & Chronic Fatigue Syndrome

When you have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), anything that causes additional pain or trauma can be especially hard on you. We need special considerations during surgery, and recovery can be especially long and hard.  A big part of the problem stems from our central sensitization. When you’re anesthestized, you may not be aware of pain, but your nerves still send pain signals to your brain, and those signals can heighten your sensitization.

About.com:  FM & CF

Sometimes I Feel Like Barbie or Fibromyalgia and Car Travel

Now, don’t get me wrong.  It’s just after 8am on Saturday, my alarm went off nearly three hours ago, and last I checked I am shaped nothing like the abnormally proportioned toy to which I refer. I am not wearing any makeup, my hair is wet and heading toward unruly, and everything I am wearing is a shade of black or gray (none of these things are uncommon, btw). Needless to say, I will not be winning any awards for style or beauty. I am just here to talk about car travel.

My Life with Fibro

Sharing My Mindful Moment

Curling toes into the soft cotton sheets. I’m in my writer’s pose, laptop on my lap, propped up on my thighs, I feel the burden of its weight and it’s warmth. My back and upper body sinking and supported by pillows, I am not comfy, but at ease. Most of my weight is lifted by pillows. It feels good under my arms and neck and head. I don’t have to use extra effort to hold those parts at attention.

Una Vita Bella

Overlooking New Symptoms With Fibromyalgia & Chronic Fatigue Syndrome

The last time I saw the carnival game Whack-a-Mole, I really related to the guy playing — when you have fibromyalgia or chronic fatigue syndrome, it can seem like you knock down one symptom only to have another one (or two, or three, or four) pop up. When you have multiple conditions, like most of us do, it can take a lot of whacking just to get through the day.  When a new symptom or set of symptoms crops up, it often gets lost in the crowd. Even with my fibromyalgia mostly in remission, I’m not surprised by an upswing in back and abdominal pain, lethargy and brain fog.

About.com:  FM & CF

David & Goliath

A lot of the dissension here feels like the squabbling of a lively, dysfunctional family, with lots of crazy relatives:). Lately, there’s been some progress in being more respectful of one another. But this being the internet, there are strangers in our midst, trying to find chinks in our nonexistent armor. That’s fine, for we are here to look at the truth. The naysayers are an opportunity to sharpen our thinking and confront rumor head-on.

X Rx

A Mom Battles Unseen Adversary

Pam Kidd was once a hard-working woman with concrete goals, ready to enter into married life. She was vibrant, full of life, and always on the go until it was all suddenly ripped away from HER.  She did marry and had children, Sarah and Kyle, and she watched the same thing happen to two young adults ready to embark on the journey of their own lives.

The Times Leader

America’s Drug Abuse Epidemic, Obama’s Administration Announces Action Plan

Prescription drug abuse in America has become an epidemic – the number of people in the USA abusing pain relievers aged 12 years plus rose by 20% between 2002 and 2009, according to SAMHSA (Substance Abuse and Mental Health Services Administration). The Obama administration would like pharmaceutical companies to develop education programs for prescribers about the safe use of opioids.

Medical News Today

How I Helped My Darling Daughter to Die

This is it, the moment of truth. After an hour and 45 minutes behind closed doors, the jury is about to reveal whether they think I deliberately set out to murder my beloved daughter, Lynn.  My every nerve is stretched to breaking point. I reach for the locket I have worn throughout the nine-day trial, containing a picture of Lynn and some strands of her hair.  I know how much Lynn would have hated my having to go through this. The last thing she told me before she died was that she was frightened of what might happen to me.

Daily Mail

Photophobia and Hyperacusis in Fibromyalgia and CFS/ME

Photophobia is not an actual phobia (fear), but refers to the eyes being overly sensitive to light. Hyperacusis means hypersensitivity to sound. Neither should be confused with phonophobia, a fear of loud sounds, which can be caused by hyperacusis.  Photophobia and hyperacusis are common in chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia. In CFS/ME hyperacusis is sometimes so severe that sounds, even normal speech, can cause physical pain.  A study showed that compared to healthy controls, people with fibromyalgia are just as sensitive to sound as they are to pressure.

FM/CFS/ME Resources

 

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Comments

  1. Thank you so much for the “shout out”.

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