Discussions By Condition: I cannot get a diagnosis.

CFS/ME, something else, or am I completely nuts?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • June 26, 2008
  • 10:05 AM

okay, first off, I am a confident, social and fun-loving young woman who loves my friends and family and is generally pretty positive, even in the face of adversity. However, for the past 1.5 years I have been mostly housebound/bedbound with a so far undiagnosed illness. Although the concept of chronic fatigue syndrome has been talked about, due to my past involvement with drugs (clean since 2004) and alcohol (clean since early 2007) and bouts of substance related depression, most doctors believe this is a psychiatric illness.

it began as:
severe fatigue
severe insomnia
severe brain fog (inability to write a sentance or comprehend simple things)
aches and pains
sore throat
cough
malaise
fever
blocked/runny nose
non-responsive "zombie-like "states after drinking alcohol or taking stilnox (prescribed for insomnia)

initially I thought this was burnout, too much junk food and I was probably drinking too much (a few glasses every night and getting drunk most weekends) so I quit drinking, cleaned up my diet and expected improvement. However it has persisted to this day as:

severe fatigue
weakness
post-exertional malaise, aches and pains
insomnia or hypersomnia
inability to multi-task (always a high-functioning area for me in the past)
pallor (sometimes scares people)
stingy eyes upon waking
cold hands/feet
easily exhausted by standing or sitting upright
constant feeling similar to being incredibly hungover
slightly slurred speech
increased vision problems, esp with focusing (already slightly short sighted)

the symptoms wax and wane in severity throughout the day/week/month but are always present.

I also have to lesser extremes:
digestive problems
headaches
short term memory problems
bad fevers
sore throats
hayfever
brainfog
dizzyness and static in the eyes upon standing, turning or walking


blood tests have shown:
epstein bar virus antibodies (though I don't think I had Glandular Fever at onset of illness)
eosinophilia (marked and moderate on 3 three consecutive tests)
slightly low cotisol levels
CRP >5 mg/L
- IgG and ++ IGM (2 consecutive tests)


I have been tested negative for:
HIV, assorted hepititis, coeliac's disease, helicobecter pylori, syrongyloides

I have tried:
natropathy
organic diet & detox
acupunture
chinese herbology
sub-concious therepy
graded excersise
B12 injections (although I am not B12 deficiant)
q enzyme 10
magnesium pills
all sorts of vitamins
meditation
reiki
Lexapro 10mg
Duramine 30mg

My new psychiatrist wants me off everything and on to lymbalta and vendafaxine to treat me for atypical depression and retarded depression.
I am hesitant to change my medication around too much as I really don't want to be on any in the first place. I haven't been depressed since my boozy drug taking days circa 2004 and believe the past year and a half I have been taking alot of medication for nothing.

I have seen many doctors as well as 3 psychiatrists, a general physician, naturopaths, chinese herbalists, acupuncturists, a chiro, sub-concious therepy etc. Theories have spand from worms to allergies to suppressed memories to depression and post-viral fatigue. Despite alot of promises and alot of money spent on treatments nothing has so far made any difference.

I am quite disabled and very sick and weak. Apart from a some cognitive improvements I seem to be getting worse not better. I just want to get back to living a normal life asap!! I live in a regional area in Australia and don't have access to the best specialists or anything like that. Is there something that may have been overlooked? Is this all in my head? am I imagining it? if so, how can I change it. I am certainly not conciously doing this to myself and can't understand why my brain would do this to my body?!?!

thankyou, any help would be appreciated :)

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