ME/CFS & FMS

Many of the posts on my blog revolve around my illness. I have been diagnosed with Chronic Fatigue Syndrome (CFS) and ME (Myalgic Encephalomyelitis), or ME/CFS, a complicated neuro-immune disease. I also have Fibromyalgia (FMS), chronic Lyme Disease & other tick-borne diseases, along with the downstream effects of migraines, hypothyroidism, IBS, immune dysfunction, etc.

ME/CFS is known most commonly in the United States by the belittling name of Chronic Fatigue Syndrome, and elsewhere in the world as Myalgic Encephalomyelitis.

The CDC (Centers for Disease Control) criteria for CFS are quite broad, and there are several different criteria out there in use by different doctors. Many American doctors have never heard the term “ME” or “ME/CFS.”

In July of 2011, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine.

I’m attaching it here in case you’d like to read it – this is the ICC for ME.

First, a note from the ICC about the name issue:

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Here’s a taste of what they have to say about it:

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every other possible cause of my illness has been tested for repeatedly.

By whatever name, it is a devastating neuro-immune illness that involves almost all the body’s systems.

(A small aside to my fellow patients, who are rightfully engaged in a war to get the CDC to adopt the ICC for ME: my blog is my space, and will not be a forum for debate over my use of the term ME/CFS.)

The most popular post on my blog is called We Know The Enemy, Or, ME/CFS/FMS Explained Again. It will give you an indepth look at my understanding of this illness (at the time it was written) & the course it took in me.

In the meantime, read on…

The “fatigue” in “Chronic Fatigue Syndrome” is really quite the misnomer – it is overwhelming exhaustion: too limp, too tired, to move a muscle. Your muscles feel like they are made of lead, and are too heavy to move.

If you have had a really bad case of the flu, and can really remember how awful it was during the very worst day, that is very close to how it feels for most of us, except it is every single day.

The most distinguishing symptom of ME/CFS other than the crushing exhaustion is:

Post-exertional Malaise (PEM):

We patients call this Post-Exertional Hell.

It is as if you have the worst hangover you have ever had, and it lasts for at least a day, usually several, and sometimes for weeks. You ache all over, terribly; are extra exhausted; your throat hurts & you have swollen glands; and to top it off, a killer headache.

What did you do to earn such horridness? You operated outside what is called your “energy envelope” – you spent energy you did not have.

Perhaps you had to go to town for groceries. Or go to a medical appointment. Perhaps you took a phone call & spoke to a dear friend for 15 minutes.

What you have to “spend” is determined by how severe your illness is in general, but also varies day to day, and even hour to hour.

It is very important to note that the energy expenditure doesn’t have to be physical – it is almost as draining to be mentally active as it is to be upright or physically active. I’m in bed right now, but I’m still expending energy.

If you have the time, I have a post explaining the way energy expenditure works for us, as well as for folks with other chronic illnesses. It’s called Always Counting Spoons.

And that is but one symptom of many:

  • Headaches, often daily, which may be severe.
  • Sore Throats & Swollen Glands (recurrent)
  • Generalized Pain – Aching All Over
  • “Unrefreshing Sleep” – Waking up more tired than you went to sleep.
  • Neurally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia Syndrome (POTS): Big words for what is a malfunction in the way the body handles blood pressure, and even blood volume. You get dizzy & may even pass out when you stand up, or when standing too long.
  • Irritable Bowel Syndrome or other GI issues such as bloating & food sensitivities.
  • Cognitive Impairment, aka “Brain Fog”: difficulty concentrating, difficulty with comprehension & word finding, confusion, etc.
  • Short term Memory Loss, which makes it hard to read novels or other books, or even follow a storyline on a tv series for many of us. This becomes Long Term Memory Loss if you’re sick a long time – the years are a blur.
  • Hypersensitivity: The lights are too bright, the sound is too loud – you are hypersensitive to everything, from light & sound to smells, foods, movement, and meds.
  • Temperature Dysregulation: your body gets overheated or chilled far too easily, and fevers often result from overheating.
  • Night Sweats
  • Sleep disturbances: Insomnia, Restless Leg Syndrome, or sleeping for many hours straight

There are more symptoms, but I’m feeling pretty cognitively impaired, so let’s leave it at this for now. I think you should be getting the general idea.

I will try to post some links to some organizations with more information very soon.

People often ask me what the difference is between ME/CFS and Fibromyalgia (FMS).

While this is still being debated in the medical community, the main difference is that people with FMS do not have post-exertional malaise. Usually, they also have less crushing exhaustion.

The general rule of thumb is that if the exhaustion is the biggest issue, you get labeled as ME/CFS, and if it’s the pain, as FMS.

Many of us get both labels.

I am too tired & migraining to get into Lyme & other tick-borne diseases (TBD) right now.

You are welcome to read the letter I wrote to the Social Security Disability folks as well as the letter my daughter, Rhiannon, wrote, at age 17, to them, about growing up with a severely ill mom.

For much more on ME, CFS, and other health issues, you can view the health blog post category.

Thank you for reading!

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2 thoughts on “ME/CFS & FMS

  1. Hi Ash,

    You mentioned that you saw a Rheumy at OSU … How did that go?
    I have had ME/CFS for 18 years. I am being treated by Dr. Charles Lapp in Charlotte (love him) but I live Columbus, Ohio and I need someone in Columbus to take care the problems I have with my joints.
    However, I don’t want to have to teach the doctor about my ME/CFS, I just don’t have the energy for that. This is why I am looking for a new Rheumy who has the knowledge and understands the ups and downs with this unstable disease.
    The Rheumy I have now is ok. But, doesn’t have the ME/CFS knowledge and she often belittles me when I see her. She has no clue about the energy envelop and the cognitive problems, just to name a few. I was going to purchase a book on “caring for the ME patients” and bring it to her and I thought I cant even bathe most days how am I going to be able to purchase a book and then find a way to teach her about the disease. It would take up to much of precious energy, would cause enormous amount of stress, and then I would suffer the consequences. So I am not going to waste my energy on her and thought i would reach out to others who have ME/CFS for their opinions.

    I was hoping you could shed some light on OSU. My symptoms mirror yours. Ash I am very sorry you have this rotten disease. Its just not fair. I don’t just understand why. But I am sure there is an answer waiting for me when I get to heaven. I would enjoy hearing back from you when you are up to it.
    Thanks so much for taking your time and energy to read this.
    Kind Regards,
    Dawn Linder
    Columbus, Ohio

    Like

    • Hi Dawn, and welcome to my blog!

      Ah, the doctor hunt… what a pain. I even wrote a whole post about the importance of finding good doctors & suggestions on how to do it:
      https://wolfdreams.wordpress.com/2012/09/14/ashs-advice-part-3-on-doctors/

      I was seen at OU in Athens, not OSU, and that was in 1999, so it wouldn’t help you now.

      My best advice would be to check some of the “good doctor” lists. There are 3 that I know of. The first can be found on my friend Patrick’s blog, http://quixoticmeblog.blogspot.com/
      It’s on the right hand side (in the web version, not mobile)

      Some other lists you might try:

      Co-Cure ME/CFS & Fibromyalgia Good Doctor List:
      http://www.co-cure.org/Good-Doc.htm

      FMS Community Good Doctor List:
      http://fmscommunity.org/findingadoctor.htm

      FMS doctors usually do a good enough job with ME/CFS, in my experience. There are a couple in the Columbus area listed.

      And of course you are very very right – you should NOT be having to educate your doctor, nor should she be belittling you! There’s better out there, I’m sure.

      Forums can also be a good place to find a doctor.

      I can also ask on Facebook, now that we’re friends. I have a lot of FB friends with ME/CFS (about 60) and while most likely don’t read all my posts (I don’t have time for everyone’s either), maybe someone will know of someone. Networking is good!

      So let’s see what can be turned up!

      You write so eloquently of what you are experiencing on facebook – you should really start a blog, if only for your friends and family, so they know what you are going through. It’s also a great way to make friends in the patient community – and fellow patients are really the only ones who can truly understand what the challenges are.

      I have made some incredible friendships through both facebook and my blogs – sister spirits. That’s hard to do in an otherwise very isolating life.

      Looking forward to getting to know you better!
      *gentle hugs*

      Ash

      Like

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