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People who follow me regularly & friends have probably noticed that in the past couple of months I have been MIA sporadically. It started with my lovely virus my kids gave me in January. It’s been a downward spiral ever since.
My life is basically summed up by and revolves around acronyms. Here’s just a few:
PCOS {poly-cystic ovarian syndrome} definition
IRS/GI {insulin resistance syndrome/glucose intolerance} aka metabolic X syndrome.
CFS {chronic fatigue syndrome}
GAD {generalized anxiety disorder} combined with panic attacks.
The thing about most of these…they are invisible 3/4 of the time. My CFS is the worst because it’s the byproduct all of the other syndromes. They are what cause my CFS. So if one syndrome goes haywire, they all do cumulative in a CFS attack. They are all directly linked in one big loop with CFS in the center.
The CDC actually has a great description, albeit clinical, of what CFS is:
Primary Symptoms
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue we experience after a particularly busy day or week, after a sleepless night or after a single stressful event. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be worsened by physical or mental activity. It’s an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.
People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational (work-related), personal, social or educational activities.
The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include:
- difficulties with memory and concentration
- problems with sleep
- persistent muscle pain
- joint pain (without redness or swelling)
- headaches
- tender lymph nodes
- increased malaise (fatigue and sickness) following exertion
- sore throat
And if that wasn’t fabulous enough there’s more:
Other Symptoms
The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including:
- irritable bowel
- depression or psychological problems (irritability, mood swings, anxiety, panic attacks)
- chills and night sweats
- visual disturbances (blurring, sensitivity to light, eye pain)
- allergies or sensitivities to foods, odors, chemicals, medications, or noise
- brain fog (feeling like you’re in a mental fog)
- difficulty maintaining upright position, dizziness, balance problems or fainting
I have every single one of them. Not one is missing.
It was funny because it took me an entire year, 4 blood tests (involving 7 vials of blood each time) & 10 doctor visits to have the doctors say ‘”I don’t know you just have fatigue”. Doctors refuse to acknowledge Chronic Fatigue unless you have the Epstein-Barr Virus marker. Since mine was caused by undiagnosed PCOS, insulin resistance & total organ failure ( a whole other blog post), I don’t have those markers.
Nothing helps.
Nothing works.
You feel very isolated because you can’t keep up with other people. Your pain, fatigue & general uneasiness is easily dismissed because it’s not an “obvious” disability. Please make no mistake. It is very much a disability when you are in the midst of an attack. It is not just a “I haven’t slept in 2 days man am I tired” kind of fatigue. It is pure and udder exhaustion. I found a site of a woman who described way better than I ever could: Advocacy for People with Chronic Illness via Christina Gleason to quote her “It’s about a bone deep exhaustion that most people will never experience or understand.”
There are two other articles that have very interesting theories as to the origin of CFS:
Chronic Fatigue is in the Genes via LA Times
Small changes in many of the genes in the brain prevent the nervous system from rebounding from everyday stress and from less frequent, stronger pressures, eventually triggering a cascade of molecular responses that leave the patient severely debilitated, researchers reported Thursday in 14 separate papers in the journal Pharmacogenomics.
Study reignites debate over virus’ role in chronic fatigue via LA Times
Government scientists have found traces of a mouse-related virus in 86% of patients with chronic fatigue syndrome, a discovery that is likely to reignite the controversy surrounding the virus widely known as XMRV.
Nevada scientists first reported the presence of the virus in chronic fatigue patients in 2009, but at least three subsequent studies failed to detect it. On Monday, however, researchers from three different government agencies said they had found the virus in stored and fresh blood samples.
Most of the time I am okay. This is the worst attack I have had in 3 years. I have no control over my emotions. I am dizzy. I have a rash over 3/4 of my body & face that looks like acne, but it’s not. This is not a pity trip or a plea for sympathy. It’s a simple explanation as to why I have been the way I have been lately. I have been asked multiple times on the web & off so I figured this was the best way to go. I don’t talk about it much. It’s something I like to deal with on my own. I figured it was time to add my voice to the countless number of people who are also suffering from this. Maybe one person will feel a little less alone.
**Update** Currently I am now being tested for a slew of other chronic conditions so hopefully, possibly, maybe I could have a name or cause for my Chronic Fatigue soon.
