ME/CFS & Fibromyalgia Around the Web

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Finding Footwear With Fibromyalgia

To deal with my foot pain, the number one thing I look for in shoes is a good amount of cushion. I used to like a hard-soled shoe like Birkenstocks, but I can’t tolerate those at all anymore! Now, the softer the sole the better. My number two requirement is arch support — nothing that puts a lot of pressure on my arch, but a little something. Third is enough space so that nothing’s putting too much pressure on any point. My feet aren’t wide, but many of my shoes are.

About.com: FM & CF

Poll: Doctors’ Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome

With fibromyalgia and chronic fatigue syndrome, we don’t even have the “luxury” of all doctors “believing” in our illnesses or taking us seriously. Sure, many do — more all the time, in fact — but we still have far too many doctors and other health-care providers who have ignored the past 2 decades of research and reached the wrong conclusions about these illnesses.

About.com:  FM & CF

Listening to the Right Voice

So often we hear a voice that is all our own, but is not speaking truth. Thoughts that seep into our life and minds, thoughts of our weakness, unworthiness or inadequacy can be so sneaky. They can become a part our day to day thinking, more than a random thought now and then.  When these thoughts become all we know, it can seem impossible to believe anything different, and that is why we must identify these thoughts and the fact that they are lies. Any voice that creates self-doubt or loathing is simply not true, but accepting that and recognizing it can be difficult. We have lived with the lies for so long, that seeing their fallacy is harder than believing the real truth.

Una Vita Bella

Working out while being sick.

When you are sick your body needs to focus all it’s energy on getting healthy again. And if you decide to workout, even if it is just a simple exercise like for example walking, how efficient will that workout be for you? It’s not worth it. You are exercising to become fit and healthy, and working out while being sick will lead to the exact opposite.

Fitness By Z

I Found My Bootstraps

I am working hard to put my life back in order post-strokes and that Prednisone fiasco that made me loony as a loon. I can never quite get it together, never get done all that needs to be done. But each day I get up and try. Then that dark caper depression reared its ugly head and sent me into the tailspin of an entirely different monster. I am a fragile mere days coming out of the worst of it and reaching out for goodness and optimism to define my life, regardless of the pain and anguish and lost opportunity us chronically ill patients are all too familiar with.

Chronicles of Fibromyalgia

Bang Head Here

That is what I feel like doing, what I feel like I need to release the stress from today’s events earlier today. But let me back up just a bit. This actually started a week ago, and really nearly two years ago when my husband lost his job and with it our medical insurance. OH ! Yep you are getting it, even before I go further are you not? Any time you mention insurance suddenly you become part of a club that totally understands why one would want to bang their head out of frustration.

Ruby’s Musings

Low Blood Volume, POTS, and NMH

Hi everyone!  It’s been a while since I’ve done a more informational post and I think it’s about time.  Given the progress I have made, I am always looking to share my discoveries with all of you in the hope that you might have a similar symptom and could benefit from my experience.  As the title suggests, the topics I want to discuss today are low blood volume, POTS (Postural Orthostatic Tachycardia Syndrome), and NMH (neurally Mediated Hypotension).

Chronic Fatigue Syndrome and Fibromyalgia: A Day in the Life

I’m On My Way!

I’ve been having a very busy last few days, only to get even more busier the day of my surgery. No date set yet as I haven’t finished my diagnostic testing nor has Dr. Wigal written me the clearance for surgery note that I need her to do. It always boils down to me bothering Dr. Wigal for one thing or another! All she needs to do is write on her prescription pad, “patient is ready for surgery.” I called her office yesterday to start the process. Hopefully it will be done by next Wednesday, as this is when I go to Gilbert to finish up the tests and I can hand the paper in right there and not have to rely on them faxing it…..they won’t, for some reason!! And I’m getting tired of all the harassment!

FibromyWHAT?

Devotion: Knowing Security During Times of Uncertainty

“. . . we who have fled to take hold of the hope set before us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure.” (Hebrews 6:18b-19a)

A sentence I recently read stopped me cold. The scene was a father listening to his upset daughter. The father asked his child, “Is what you are saying true, or is it how you are feeling?”  I pondered those words. I thought of the times I cry out to the Lord when I am in the midst of overwhelming challenges. I don’t doubt Him. I feel worn to a place where I doubt myself. How will I bear one more moment? I cry out because I feel all of my own strength is drained. I feel I am in the midst of a storm, needing comfort and peace.

Rest Ministries

Sacred Healing Resolutions for CFS

Here on the Health Matters Show podcast and blog post today, we’re talking about CFS and Sacred Healing Resolutions. (See the audio podcast file below.)  Today’s show is happy to link together two parts of the CFS discussion: the physical nature of CFS discoveries, such as with spinal fluids and the spiritual or sacred nature of getting well.

Health Matters Show

Mission 2011: Saying “Yes!” to Special Events

As fate would have it, I have a “special event” this month that I need to diligently plan for so I can make it through it without a flare-up disaster. Which makes this the perfect month to tackle the topic of special events for my series of Mission 2011 posts.  Let’s start with talking about what exactly I mean when I say “special event.” 
I guess for someone healthy, a special event might be a wedding, a party celebrating a milestone birthday or a dream vacation–something big, fun and out-of-the-ordinary. For those of us living with chronic illness, a “special event” could simply mean leaving the house! Or it could mean going to a concert, a play, visiting friends or going to a holiday dinner.

Oh My Aches & Pains!

New Gulf War illness study looking for participants
If you served in the 1991 Gulf War and developed symptoms of Gulf War related illness, you may be eligible to participate in a treatment protocol conducted by Dr. William J. Meggs at the Brody School of Medicine at East Carolina University, in Greenville, North Carolina and sponsored by the Department of Defense.  After a telephone screening interview, participants who qualify and wish to participate will be brought to the Brody School of Medicine at East Carolina University, in Greenville, North Carolina, to undergo an evaluation.

CFS Infighting On Steroids

The nasty contentiousness happening on some ME/CFS on-line forums, and metastasizing over into Facebook pages and email is revolting. People have become rabid, stalking victims in packs. Such things as truth, objectivity, civility, and accountability are being discarded in their attacks.  I’ve never in all the years of CFS advocacy seen anything like this rabid mass phenomenon. We’ve had individual people who have displayed such deranged viciousness, but not the gladiator pit mass attacks we see today.

 
The Transforming Faces of the CFIDS Association of America
 
In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.
As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.  Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”
 

 PetitionCAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize that the CAA is not our voice.  It’s my pleasure to have been asked to post it to Change.org and to roll it out, although the petition itself is a grass roots collaboration.    The petition is here.  The CFIDS Association of America has proven itself to be an inadequate representative of our illness. The following petition is designed to be presented to the NIH, CDC, and CFSAC. Our goal is to present it at the May 2011 CFSAC meeting.

CFS Untied

How To Treat People Who Use Mobility Aids

I use a scooter when I have to walk long distances. When I do I feel as if I’m a different person because of how people react to me. People who use mobility aids such as a wheelchair, power chair or scooter are people just like you. It’s difficult enough to admit the need for these types of medical devices but to go into public to feel ignored, unsafe or unworthy makes some people who have health issues stay home unwilling to face the world, or too angry and stressed out.

My Chronic Life

A Better Quality of Problem!

When you have a chronic illness it is easy to think that once you are better life will be perfect; that you will be running around in a bubble of loveliness; that nothing will ever get to you again. If I get my health back I will never complain or worry about anything EVER. EVER. EVER!  Well I have failed on that score already! But there is no doubt that some problems are much better than others. And I realised the other day all my current problems are now of excellent quality. A couple of years ago problems were all about getting through the day:  Will I be able to get out of bed before mid day? Will I have the energy to wash and dry my hair? How am I going to stay sane? And so on. I am now up by 8 am every day. It’s an energy miracle! I now shower and get ready without even thinking about it. And I no longer have to worry that it will take me a week – or longer – to recover from ‘over doing’ it. I now have balance in my life and if I don’t try and do too much it all kinda works out.

Sofa & the City

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Comments

  1. Thank you so very much for including my blog as a resource here! I’m honored! Here’s to living a beautiful life with fibromyalgia, fatigue and all of the other challenges that go with it.

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