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
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
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
short term memory problems
bad fevers
sore throats
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:
organic diet & detox
chinese herbology
sub-concious therepy
graded excersise
B12 injections (although I am not B12 deficiant)
q enzyme 10
magnesium pills
all sorts of vitamins
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 :)

Reply Flag this Discussion

3 Replies:

  • Your symtoms could be caused by many different things but thyroidal status, glucose levels and Hb would be interesting... Do you know if the EBV tests showed an ongoing infection or just signs of an old one?
    Anonymous 42789 Replies Flag this Response
  • im 95% sure you have CFS from your post and the symptoms you described, very typical CFS. It certainly isnt in your head and i doubt if you know about the following info which also backs up that it's CFS. non-responsive "zombie-like "states after drinking alcohol Most CFS people react badly to alcohol. Alcohol intollerance is so common in CFS that one CFS expert tried to get that symptom put into the CFS diagnostic guidelines. slightly low cotisol levels Studies have shown that ONE THIRD of CFS people have LOW CORTISOL. There are a lot of studies online about the low cortisol aspect of CFS http://www.endfatigue.com/health_articles_c/CFS_FM-low_morning_adrenal_cortisol.html. The studies thou talk about low morning cortisol levels..but in many of us (including myself)..this low cortisol will show up even in an overall 24 hr cortisol test. You are needing a correct diagnoses but to get that you probably need to go to a doctor who is familiar and up to date with CFS. Seeing you are in Australia, i strongly suggest for you to get involved in the following CFS support forum as nearly all of us there are in Australia and you will be able to get advice on CFS doctors etc http://forum.notcrazy.net/ (You probably also could do with some emotional support there while you are trying to get properly diagnosed). Nearly all of the Aussie states have their own CFS organisations or associations who can help you too (except im not sure about NT and WA). Maybe get in touch with one of them (even if it needs to be another Australia state)... they will give a lot of good advice. i dont know your financial status but one can get onto disability if one has CFS and cant work. i myself are on disability for this illness.
    taniaaust1 2267 Replies Flag this Response
  • I agree with both replies above...I have pretty much everything you described, but also pain in various places...that means I have Fibromyalgia and Chronic Fatigue. I agree with the Epstein Barr comment, is it current and active or just old exposure. If you see Infectious Disease Dr in regards to that they know how to test you appropriately. Almost all adults have past exposure to Epstein Barr and will test positive for that. They claim that anti-virals might or can help then if that is the problem...not all DRs agree on that. I gave it a very good try and it did not help me, but everyone is different of course. They can use anti-virals like Valtrex which in now generic here so cheaper... or similar drugs if Ep Barr is the problem. Thanks for the info on alcohol sensitivity in regards to CFS, I did not know that... could explain some things though. If you dont have chronic pain in neck, shoulders, etc...then it would not be Fibromyalgia and be glad for that...to not have multiple diagnosis.Good luck, and you are not nuts or crazy or anything like that...dont let them feed you that BS. I heard that for 7 years before a diagnosis. That said though, antidepressants can be useful in your treatment, does not mean you are actually depressed or whatever. Best wishes! Dana
    stardust11 4 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.