Frequently Asked Questions
Introduction - (this faq still a draft)
This report entitled 'Frequently Asked Questions' is not about the physiology of CFS (Chronic Fatigue Syndrome), but the psychological and experiential nature of it (as told from my vantage point), in the hopes that friends, family, researchers and advocates may process, and absorb the symptamological presentations of CFS (and similar Autoimmune illnesses) in individuals and their communities.
What is the nature of the illness' psychological symptoms? What is at play, who is effected and how? What is at stake by disruptions in social order (both work related and familial) that CFS ensues?
I'd like to begin by thanking all of you for your patience and support during this arduous/confusing journey (especially) of the past 8 years (and further) as I've discovered what my condition consists of - that it is called 'pTBI-cf', or 'Post Traumatic Brain Injury Chronic Fatigue'.
I've learned that the condition of chronic fatigue may present years (even decades) after head injury and that it is a common effect of what is termed 'Secondary Injury' following head trauma. Secondary Injuries progressively affect differing systems in a 'cascading' manner (similar to the condition of CFS).
As you know I had either been: 1) not diagnosed then left on my own after Doctor visits to figure it out, or 2) misdiagnosed (by myself and others) as having Lymes, environmental illness and finally misdiagnosed as CFS (I don't have CFS, I have pTBI-cf). During this time I apologize for the confusion and this webpage will, among other things, explain the twists in the story that led me to believe each erroneous diagnoses.
pTBI-cf, like CFS can be viewed as a collection of (related) dysfunctions (why CFS is a 'syndrome').
Though I don't have CFS, I share many common traits with CFS patients including associated comorbid conditions (such as POTS, sleep irregularities, PEM, IBS, rashes and markings, etc.).
To further complicate matters, CFS has different subtypes (ME for instance, is arguably a form of CFS). As noted, CFS shares traits with Autoimmune disorders, though it encompasses different networks, as outlined in my report located at http://CFSHelp.info .
My injury was in 1994 and as Doctors hadn't mentioned the fatigue as relating to my head injury, and as there were diverse symptoms that seemed infectious in nature (rashes, dizziness etc.)...and also as I didn't yet know about the long term Secondary Injury cascading effects, I thought the effects of head injury would present immediately not decades later - so I didn't pursue head injury as the 'vector'. I sought other culprits.
That I have now the name of my condition I've made tremendous strides and am a hairsbreadth away from finishing the medical recommendation of preferred treatment to present to my Doctor. The great news is that there are many therapies to endeavor (and the Doctors I visited would best have consulted the same textbooks I have, as typically the earlier therapies are engaged, the better the outcome).
Being a report regarding psychology and experience, let's please start there.
On one hand you have the viscuous plastic elastic nature of reality, then a constant radio station mind playing that are thoughts, then your gut feeling, your heart aspirations, spirit and all manner of psychologies and psychokinetics (e.g. dreamland, astral realms etc.). I call it 'many minds' (the wide gamut of which I'm saving for my next posting ;) ).
If that doesn't already sound like a juggling and balancing act we're performing, imagine then throwing in a head injury (or autoimmune illness), and as you shall read, new elements emerge. Thank you for allowing me to share my story and here are frequently asked questions:
1) But you look ok, and seem to act alright in social situations and at work
2) What's it feel like for other patients?
3) Haven’t you seen doctors to help with this? What do they prescribe?
4) You keep changing your mind about what you have, are you a hypochondriac?
5) What does it feel like for me?
6) What are you doing about it?
For a full report on CFS and pTBI-cf, please visit CFSHelp.info