Hep C Discussion Forum

I read this before I became a member. Very helpful. 

Canuck - I loved what you had to say in this post. Very true! Question, Will the brain fog get better with treatment. I hope so.

Tig,

I agree, the "common and less common symptoms" survey that they did, was quite good. Glad you posted it. Especially interesting about pain, fog, skin (all of it really)! Liked their further talk about "continuing" symptoms "after" cure.

I did find it/see it already (only because it followed some other good thing you posted lately which I explored thoroughly), and I really wish I could have pulled that survey out during my last exasperating appointment, where I was unable, due to fatigue/brain fog, to fully articulate for them WHY I am still "not feeling very well"! Duh, like ... some of the same bothersome symptoms I have been experiencing for the last weeks, months, years, decades prior, I am still experiencing now (in more or less ways), symptoms that I have already tried, on so many occasions in the past, to define? Like .... fatigue/brain fog for example? The wee bit of vindication I feel when reading the survey, about, how like me, so many of my comrades have well or ill-defined residual complaints, does me no good if (of all people!) my health care team is not expecting them as a possibility for me. It would be nice, in my case, if they might simply expect to hear (from people like me, who express themselves poorly "verbally") and accept statements like "still not feeling so well" and not try to attribute my (unexpected to them I guess) "complaints" to being a nice easy case of depression - must I defend how I feel, my symptoms, against being pidgeon-holed as "being depressed"? My appointments can be frustrating, as I DID keep a VERY good and detailed/long-winded "written journal" at THEIR request, all through trial, expressly to document my joint pain/skin issues, etc., and to bypass brain fog inaccuracies - write it all down correctly they say, then it is ... OK, "you are having memory and concentration problems, let's verbally grill you on this for every historical fact about it"!

Why exasperating? ...  rapid machine gun fire grilling/questioning, enough "verbal/off-the-cuff/memory and quick thinking details being demanded of me (dates, times, names) to be dredged up in 5 mins, that normally might take me at least a day to explain! I ALWAYS flunk these intense info grilling sessions. I left the office, unable to fully list, condense, articulate explanatory accurate details concisely/precisely as to how and why i feel the way i do - (obviously it is contagious as when I leave the office, I must leave them confused!) I was offered back their "synthesized interpretation", I had  "non-specific" complaints, "perhaps you are depressed". Oh brother! Ug! Arrgh! Huh, gee, do ya think?, hey ya, just may-be! a wee bit depressed after all a body has gone through! Sigh. Wading through my sludgy grey matter to get to the other side is at best like extricating yourself from a swim in a fudge puddle. In frustration I have come close to tears, a couple times during these "info updates", it feels more like being waterboarded rather than a helpful exchange of info! Everybody would prefer short, simpler to deal with, non-gangly "easy-button" answers it seems.

First question: by a bristling-ly healthy specimen of a high performing human, in her revved prime, who sports a large fresh IQ, capable of easily performing complex multi-tasking while under time-duress, and having to only to use up a very few of her fully-firing snappy synaptic stores to get her work done ...  she begins:

(1) "Do you still have confusion?", (duh ... I like to call it brain fog I'm thinking silently to myself!)

"Yes", I say (quite pleased with myself that that part went well!). It was all downhill from there on, in a brain-sputtering fugue at about question 3 as the intense interrogation continues on my rote memory for exact dates, times of events (often covering and RE-covering details already explained verbally, AND, already, dutifully (accurately) recorded in my journal!! ...  the  verbal "interview" just gets worse and worse until I bog down and just let the blanks "fill in" the rest, out of shear frustration and  fatigue. Added insult, she always demands "re-verification", she repeats back to me the "perceived" answers, insistent I confirm that they are complete and accurate (last chance! - the faint-hope clause might take affect to dredge up some form of quivering firing brain matter to rectify the info - but nope, I'm in sleep mode now)!! I obviously do not perform well by their verbal style and rules - "cut off" if I stray, asked again until some kind of answer (appropriate to her) is elicited, one word answers only would be best it seems. Oh good grief, help me! Didn't they ever read the so-demanded journal?

Man, do I EVER wish I could just say, "Gee whiz, I feel 110 % improved, NEVER have I EVER felt better, nope I don't have one single complaint, feel like a million bucks, any other questions for me"? I think it would go a lot faster this way - or at least be within the grill time limit. 

How can they, of all folk, not anticipate/acknowledge/realize how "frustrating, wearing, fatiguing, depressing" it can be for those of us who have had to haul HCV symptoms around for decades and who still harbour degrees and vestiges of them even after "cure", to be able to well-define and articulate all of this "syndrome" back to them.

Whine and vent over! - hey - I feel some better now - THANKS!  C.

Tig,  great resource and article.  Thank you.  Chris