(Also called chronic fatigue immune dysfunction syndrome & myalgic encephalomyelitis, and bearing close resemblances to fibromyalgia, gulf war syndrome, multiple chemical sensitivities/E.I., and post-polio fatigue syndrome).
I had a wee dialogue with my fantastic LJ friend,
HER: It's interesting that you have CFS, though. Many of my colleagues still refuse to diagnose that in their patients. Do you get treatment? If so, what? And does it work? And, if my questions bother you, let me know! :D
ME: no questions don't bother me
there is no treatment i take that works
main things - keep a regular sleeping schedule, eat goodly, don't exert - but these really don't help much
was prescribed synthroid, propanalol (imatrex), effexor, and ambien cr - lost the precription for that one
cfs is not really related to depression - contrary chemical indicators - but they prescribe anti-depressants anyway
docs don't like to diagnose cfs because
1 - it makes them feel incompetant and stupid (powerless)
2 - they see it as a mental disorder
Also, Ambien is a hypnotic that's used to treat short-term insomnia, not an antidepressant if that's what you were implying.
Surely, though, if they saw it as a mental disorder, they'd send you to a psychiatrist? The current consensus among doctors is that it's neuropsychiatric, which would mean you'd have to see someone like me.
Unfortunately, I have to say you're right, though. A lot of doctors don't like to keep up to date with the newest findings and when confronted with something like CFS, they don't know what to do and feeling helpless is the worst feeling a doctor could possibly have.
Sorry you have to put up with that shit, you oughta find yourself a competent doctor, really. Not that that's easy, I know.
what's most important is finding how to address the low blood pressure in the brain
researcher JAY goldstein attributes these problems to a "gating/timing" failure mainly around the brainstem - whether this is caused by brain damage, yeast toxins, or cytokines - and i believe he is correct
timing is everything in cfs
(because of my chemical injury), i feel i have a low or incorrect functioning of the basic transmitter acetylcholine
so i wonder if encouraging serotonin and norepinephrin (via effexor) above this is actually helpful
a non-addictive sleep aid to help regulate the sleep/wake cycle, such as rosearium (sp? - i get it confused with a joseph heller character)
but still - strengthening these synapsis might POSSIBLY act as a structure to help acetylcholine - i don't know
effexor actually negatively affected my sleep - which makes sense to me - and i have also had (SOMETIMES) parkinson-like symtoms while taking it - so it seems the transmitter chain of control remains irregular
what they need to do is study the counter-depression indicators while prescribing SSRIs - for example, if cortisol levels actually INCREASE instead of decrease, as they would in treatment for depression. (cfs patients are adrenal burn-outs). i am open to paradoxical reactions because cfs is a paradox to begin with.
psychiatrists who treat cfs need to know they are treating a physical condition which has psychiatric manifestations - and not the other way around. in order to receive disability assistance in this country, cfs patients are REQUIRED to report a SECOND disability. that means they are usually required to see a psychiatrist for depression. dealing with the confusions of interpretations, what constitutes "a headache", etc., can drive one mad [sic]. very humiliating.
cfs patients are not sad light-bulbs dimming out. they are hyper-angsty light-bulbs that have BLOWN out, resulting in inactivity which appears like depression, but is an opposite.
i had a hellova time finding someone to diagnose my cfs. in disgust and out of necessity, i have given up looking for more doctors, although my present doctor does indeed understand my condition and i am so thankful for him. in some ways.
all said and done, i would love to be your patient. i do respect your interest and seriousness on the issue.
HER: Also, have you ever tried graded exercise therapy? The majority of my patients react very well to that and it's the only thing, beside cognitive behavioral therapy, that I can think of to have a positive effect on CFS.
i studied cogn behaviour therapy at the uw - madison wisconsin - a good place for that - i also had a major interest in stress + physiology/the brain - some psychoneuroimmunology
there are limits to cognitive therapy, although i do believe in it
it isn't too effective in serious cases of cfs, which is a physical problem that takes it's own course - and because of all the social unacceptance of cfs, it doesn't help a main cause of stress in cfs, which is an inability to fit in to society and achieve appropriate circumstances
however - in many cases, it wouldn't hurt, and might provide some advantage - yet it can also be a stressfully inappropriate strategy to try on an exhausted, attention-disabled, and stressed-out patient who is seeking appropriate understanding almost pathologically
graded exercise does some good - and i believe in it - but there are similar problems
one is that the physical therapist might not have the wisdom to apply the therapy appropriately to the patient - who can need very little to NO exercise at times
and professional therapy has costs - monetary, time, and consequential relapses
so it actually makes more sense for the patient to apply the therapy in the daily course of his/her life - that way maximising personal productivity
and THIS has problems - because personal therapy is hardly respected by family or professionals - and so it isn't given much support - i worked a lot in the garden and increased my exertion tolerance, but also received massive misunderstanding and competition from neighbours and family - who viewed me as healthy - and had no conception of the hidden relapses experienced
relapes are unavoidable and necessary to G.E.T. in my experience. they are only minimal if the patient is already on the road to recovery. if the condition is still worsening, GET should be avoided. in successful upgrading of tolerance, there is also an increase of time and intensity of relapses - so the patient questions what the point is of gaining more tolerance
and the worse thing about this is cfs patients are often in a crisis of circumstance, and need the energy used up on long term therapy in order to try to deal with emergency short term goals
what cfs patients need is complete allowance to do what they want to, and can, do - with an infinitely open timeline - to have the ability to sustain hope and optimism on their own terms - without optimism, they are shot to hell - and such a situation can only come from a complete shift of awareness on the part of society
they also need support in daily living
regular sleep and proper nutrition can be a bit helpful - but the eliminaton of stressful events/surroundings is the fundamentally effective medicine
B12 shots are thought to help, but not easy to get - and B12 in vitamins is inefficient. non-red meat consumption can help supplement if the patient can tolerate much protein
a protein-rich diet is thought to be helpful, but is also known to cause problems
(note that CFS has not been found contageous. Viral activity such as by HHV-6 or those found in AIDS are of viruses found in the general population, and do not suggest any contageon or pathology related to AIDS or other contageous illnesses)...
CORRECTION (re: previous link) - the non-HIV AIDS theory of CFIDS in the early 90's has been discounted. CFIDS is NOT spread by saliva. Studies have shown no such correlations. Epidemiological anomolies which appeared similar to contageon are more likely attributable to environmental fators such as chemical toxins. In addition, a genetic predisposition to CFIDS has been found, also discrediting the contageon theory. In other words, members of the same family can get CFIDS because they are genetically related and/or subjected to similar environmental factors. The non-HIV AIDS theory was sensational hype. Sorry I posted it, I was tired, and it did have some interesting and true observations.
The fact is that immune disregulation can simply give COMMON viruses - such as HHV-6, Epstein-Barr & Citamegalovirus - and yeast - an unfair advantage to proliferate. It does NOT mean that they cause the disregulation! MOST PEOPLE ALREADY HAVE THESE VIRUSES!
Jay Goldstein - Symptom Checklist - http://www.anapsid.org/cnd/diagnosis/goldstein.html
Jay Goldstein - Treatment - http://www.immunesupport.com/library/showarticle.cfm/ID/4351