Category Archives: Chronic Fatigue Syndrome

Resource Helps ME/CFS & Fibromyalgia Patients Find Good Doctors

I’ve just updated the resources pages for Fibromyalgia and ME/CFS with a new entry: the Co-Cure Good Doctor Lists.

This page lists doctors suggested by other patients with fibro and ME/CFS (or chronic fatigue syndrome, as some still call it), by U.S. state and not-a-few other countries. The theory is similar to Angie’s List, the site that lists service providers with customer-written reviews — the doctor who is referred by other patients is more likely to actually be a good choice for women with these conditions.

That said, some of the doctors on the lists were self-referred — in other words, they submitted their own names with the affirmation that they were “fibro-friendly” or “ME/CFS-friendly” and had significant experience treating patients with these illnesses. All self-referred doctors have a note to that effect beside their entries.

There’s a reason I found and decided to add this resource to Euston Arch, and it’s not a pretty story. But it’s a story that needs to be shared. Share it I will — tomorrow. (It’s taken me several days to process what happened sufficiently to write about it cogently.)

‘Til then, take a look at the Co-Cure Good Doc list, and see if your primary care provider is listed — or if, perhaps, there’s a better choice for you out there in your community.

“A Blessing, Not a Tragedy”: How Changing Your Perspective on Chronic Pain Opens Your World

Rose Colored Sunglasses

earicicle came out of the closet this week. Not as a gay person — as a chronic pain/CFS survivor.

Who is earicicle? (What a great name, by the way.) This is earicicle — a commenter at DailyKos.  In a touching, extremely inspiring post titled “i lied. earicicle’s confession. And celebration“, she comes clean with her story as a CFS patient for over 20 years.

Then, she writes:

Last October, I read a sentence here at dKos that took my breath away.

I have decided to celebrate this anniversary as a blessing and not a tragedy.

It was from a diary by Iraq War veteran Broken Skull:How an IED got me to vote. (I got blown up 5 years ago today).

I was injured in Mosul, Iraq when an improvised explosive device (IED) sent shrapnel into my brain.  Throughout the last five years, things could have gone one way or the other, from possibly not living through the initial blast to not ever becoming a functioning member of society.  It has been a long tough fight and it has never been easy.  I have fought every step of the way, sometimes fighting myself and loved ones along the way.

Broken Skull’s diary shook me to the core. Because I also remember wondering if I was going to live or die. If I would ever become a functioning member of society again. I remember fighting every day. Fighting for miniscule things that no one ever saw. It sometimes took hours to gather my strength so I could walk ten feet from my bed to the bathroom. Because that was something I was determined to do on my own, even if it meant crawling there on my hands and knees.

I wrote down his simple sentence: “I have decided to celebrate this anniversary as a blessing and not a tragedy.” I looked at it again and again as this 20-year mark loomed.

Broken Skull, you made me DETERMINED to celebrate and not to mourn. Until I read your diary, I think that I had been quietly losing a battle within myself. . . . I survived, when others haven’t.

This is a powerful piece of writing, and I can only encourage everyone to go read it, in full, right now. It got me thinking — as the best writing always will — about my own attitudes towards my illness(es) and, especially here lately, the growing impact on my quality of life, the things I can do, my relationships, my self-esteem.

I have always been a positive person. Annoyingly Pollyanna-ish, some would say. I actually get irritated with the naysayers and the whiners — really irritated. The upside of this character flaw, however, is that for most setbacks, I can count on a very short “downtime” before I’m right back up again, in problem-solving, “cheerfully optimistic because everything always works out” for me mode.

Lately, however, with the worsening of both  of my main conditions — the nerve pain resulting from the spinal curvature, and the fibromyalgia symptoms — I’ve felt myself slipping away from the light into the cold, clammy darkness of fear and the unknown. Gone is my habitual sunny optimism. Instead, I find myself swimming in unknown waters — waters of fear, of hopelessness, of overwhelm, and yes, even of rage and howling indignation.

For the first time in my life, I think, I actually asked the question “Why did this happen to me?” Followed closely by another first — well, since childhood, anyway: “It’s NOT FAIR!”

What I do know, however, is that we choose our thoughts. We may feel as if they’re chosen for us but we know deep down that’s not true. And our feelings are nothing more than our reactions to our chosen thoughts. Change your thinking, change how you’re feeling. It’s not easy, but it is that simple.

So, lately, I’ve had to re-exercise those hope muscles. Those feelings of positivity aren’t coming naturally anymore — they need some help, at least for now. I’m trying to tell myself repeatedly these things:

  • I am alive, and that is something to be wildly grateful for.
  • I will not die from this.
  • I am stronger than this.
  • I am MORE than this.
  • I know how to help myself.
  • Getting well is important. There is nothing MORE important, really.
  • I am doing my best.

Will it work? Will I get my easy, naturally sunny and positive disposition back? Will Pollyanna return, or is she forever banished? I hope she’ll be back. All things being equal, it’s a lot easier to deal with setbacks when you’re not drowning in a sea of hopelessness. But maybe when she does return, she’ll have matured a little bit from the experience. Maybe she’ll have a touch more compassion for those who can’t see the light that she sees.

Updating The Tramadol Diaries Resources List

If you haven’t checked out the list of web resources for chronic pain survivors here on The Tramadol Diaries, I’d like to encourage you to do so now. Take a look, and tell me what I’ve left off. I know there are tons of sites out there, but I need your help identifying the best, most reliable, and current blogs and websites that pertain to chronic pain, or to any individual chronic pain condition.

Today, I updated the list with a few medical information sites pertaining to fibromyalgia and ME/CFS. I’m especially interested in hearing from patients of other illnesses who can tell me what sites have helped them in particular.  So, take a look at the resources list, then drop me a line through the contact form on this site and tell me: what did I miss?

Reblog this post [with Zemanta]