Wee little note – this is out of date. I started this blog in 2010, for my family for the most part. To help them understand my illness, and help me work out my thoughts on it and also other matters. Since 2010 I’ve learned a lot of things about the nature of my illness, which is not always reflected in posts like this. But I am bedbound, and do not have the energy to update this. So, this is what I thought, a decade ago….
My mother said to me the other day that my brother can’t seem to wrap his mind around the concept that I’m really sick and there’s really very little that can be done about it. He seems to still think that “if I only went to better doctors or the right hospital, they could figure out what was wrong, and could fix it and I’d get well”. He has said the same thing to me. I know he means well, but he doesn’t seem to understand some things.
We know what is wrong with me. I have (and have had for over two decades) a diagnosis that is shared with at least one million other people in the US, with an estimated additional 3 million who have it but have yet to find a doctor who can diagnose it. It is poorly understood, although there is more research being done, worldwide. We learn a little bit more, get a few more pieces to the puzzle, every year.
Going to see another doctor would not change anything. I’ve had more than a second opinion – there have been thirds & fourths & even fifth opinions. There have been specialists from every specialty there is to look at my case & weigh in, and everyone is in agreement.
I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), and chronic Lyme Disease, diseases that commonly overlap with ME/CFS.
In July of this year, 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.
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 possible other cause of my illness has been tested for repeatedly. This is what is wrong, and why I’m still sick & getting sicker all the time. ME/CFS is a progressive illness.
I have seen:
- Three Primary Care Providers (at least)
- Two Rheumatologists plus the Rheumatology Department at Ohio University Medical School
- An Internal Medicine Specialist
- An Infectious Disease Specialist
- An Endocrinologist
- Two Gastrointestinal Specialists
- Two Neurologists
- A Cardiologist
- An Ear, Nose & Throat Specialist
- And one literally world-renowned Pain Management Specialist
I have had every test, every lab (and as the Labcorp tech put it the other day, my doctor orders tests that don’t exist – they do, but only thru speciality labs), CT’s, MRI’s, EEG’s, EKG’s, a sleep study, cardiac studies (at none other than NIH), and another cardiac study at Johns Hopkins.
I have over 1,000 pages of medical records & lab results, all of which point to my having as “classic” a case of ME/CFS, FMS, and chronic Lyme, as a person can have. As a result of those, I also have Irritable Bowel Syndrome, Migraines, Hypothyroidism, Neurally Mediated Hypotension, Myofascial Pain Syndrome, and Inflammatory Reactive Arthritis.
In other words, I am a “typical” late stage ME/CFS patient.
It is believed there may be a number of different triggers for ME/CFS, which set off a chain of events in the body, similar to a cascading system failure in a computer. Once started, it’s difficult to stop. Very few people recover completely, and if they do, it’s usually within the first few years.
This has also been called “Post Viral Syndrome.” It is fairly common in patients recovering from mono, which is caused by Epstein-Barr Virus (EBV) – they simply never get over it. Having ME/CFS is like having a slowly worsening case of mono that never ends, and it expands to affect multiple body systems. Most ME/CFS patients have very high levels of antibodies to infections such as EBV and members of the herpes family, and I am typical in that regard – my EBV, HHV-2, HHV-6, Human Parvovirus B-19, and others are off the charts.
My first diagnoses with “CFS/FMS” was almost 20 years ago. At the time, the illness was fairly mild, relapsing & remitting episodes of fatigue, severe headaches which lasted days & I initially attributed to recurrent sinus infections, and some sleep issues. I had good weeks & bad weeks, and during the good weeks, it didn’t really seem like much was wrong. I “pushed through” the bad weeks because I had to – something most patients do, but unfortunately for us, those who push through the longest & the hardest are the ones who wind up the sickest.
In late 1998, I seemed to get the flu, except it never left. The headaches were constant, and after three rounds of antibiotics without improvement, with incapacitating exhaustion, I and my doctors realized that something was wrong beyond sinus infections. That is when the formal diagnosis of “CFS/FMS” first shows up in my medical records.
As the years have passed, it has slowly gotten worse. We have tried (and are still trying) every medication possible, as well as alternative therapies. I follow the clinical trials that are ongoing, and my doctor is more than willing to give me my own trial of medications that might help. Sometimes they do, and sometimes they don’t.
I worked too long. I should have stopped in 2004, when my rheumatologist told me to. But I’d just bought this house, and had a thriving business, so with the “help” of stimulant medications, I pushed onward, pushed myself beyond what you would believe, to work a few more years. But we know now that it’s the patients who push the hardest who get hit the hardest, who go downhill the quickest.
Now, I am primarily housebound, if not bedbound. Going out at all is very hard.
I have incredible exhaustion which is beyond your wildest nightmares, and which gets worse after any exertion, whether physical or mental, and can be worse for days, weeks, months, etc. This has it’s own name, and is one of the defining symptoms of ME/CFS: Post-Exertional Malaise (PEM).
As is typical, I have severe headaches, which are accompanied by intense sensitivity to light & sound. There are some patients in whom this gets so bad that they must move to an isolated area, and spend their lives in silence & the dark, not even able to speak above a whisper.
I have pain, in so many places, a generalized ache all over my body, but also knots in the muscles and the fascia (the covering of the muscles), and also osteochondroitis (inflammation & pain in the spaces between my ribs & breastbone). The pain is not helped by tylenol or advil, it takes the strong stuff – opiates – to dent it at all. There is never a time without pain. It’s a matter of degrees.
I have constant gut issues, commonly called Irritable Bowel Syndrome, but it goes beyond that. I have Leaky Gut Syndrome, where particles from food I eat leaks into the bloodstream. Since it doesn’t belong there, my body develops antibodies & sensitivities to it. It has reduced the number of foods I can eat tremendously, and what I do eat often causes bloating & cramps.
There is more, but I don’t think I need to go into it any further. Hopefully, you are finally getting the idea that it’s not a matter of finding the right doctor who will magically get me well.
I will continue to watch the clinical trials that are ongoing, and continue to hope that there will be a breakthru. I’ll also continue to try the complementary therapies my rheumatologist thinks might help.
But seeing another doctor, getting another opinion, that’s really just not needed. Not at all. And besides, I can’t travel anymore. That’s out of reach. I’m glad we traveled and did cruises as long as I was able to. I will forever cherish the memories of Hawaii, Alaska, the Caribbean, and the trip to the UK & Wales I did right before it got severe.
We know the enemy, we know it’s many names – CFS, ME, FMS, Lyme.
But what no one, anywhere, knows is how to cure it.
Maybe, one day, they will.