Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
so..dear ds friends ..ben going thru a rough crash phase, what is it 2-3 months now? We kinda get used to a life that sucks ..then it gets worse.
Anyhoo, been trying the naturopathic thing..first doc i went to listened abit and her parting comment was .. Well its onky cfs, its not cancer you'll be ok. .. I never went back.
Been with this doc just over a month, he listened, no diagnostic tests, put. On naturopathic 'remedies' for a month. HORRIBLE! I had to change my working arrangement because i just could not go to work, felt like hell the whole time, depression came back... Doc says"dont worry, youre just detoxing"
So after faithfully following the plan for a month, i ask for tests. I went into this with test reports showing liver and kidney damage, atherosclerosis, inflammation, higzh cortisol and prediabetes. We retest and EVERYTHING GOT WORSE!
My dear doc looks at the entire suite of tests and says "these look really good, according to these you are perfectly healthy"
So I raise my sagging head,focus by doubly-focusing eyes on him and say "doc, do i look perfectly healthy to you?
And here comes the kicker
"you know, it may be psychosomatic!"
@#*!!!!
I think dem dam docs gonna make me psycho!
Really?!?
The cfids guide identifies over 60conditions which must be eliminated before cfs is diagnosed. I have spent hte last 3 years testing and retesting for the same 5 conditions over and over..and since i dont have those then i'm imagining that i'm ill?
Because they have not done their homework And cannot find their asses relative to their heads,i have psychological issues?
And these docs swear they have treated many cfs patients and they dont know rule 1 ..ITS NOT IN OUR BLOODY HEADS!
Sick of thse frikkin docs..but dont know what to do ..my body is falling apart, i need medical help..just dont know where to find what i need.
Sigh..
Anyhoo, been trying the naturopathic thing..first doc i went to listened abit and her parting comment was .. Well its onky cfs, its not cancer you'll be ok. .. I never went back.
Been with this doc just over a month, he listened, no diagnostic tests, put. On naturopathic 'remedies' for a month. HORRIBLE! I had to change my working arrangement because i just could not go to work, felt like hell the whole time, depression came back... Doc says"dont worry, youre just detoxing"
So after faithfully following the plan for a month, i ask for tests. I went into this with test reports showing liver and kidney damage, atherosclerosis, inflammation, higzh cortisol and prediabetes. We retest and EVERYTHING GOT WORSE!
My dear doc looks at the entire suite of tests and says "these look really good, according to these you are perfectly healthy"
So I raise my sagging head,focus by doubly-focusing eyes on him and say "doc, do i look perfectly healthy to you?
And here comes the kicker
"you know, it may be psychosomatic!"
@#*!!!!
I think dem dam docs gonna make me psycho!
Really?!?
The cfids guide identifies over 60conditions which must be eliminated before cfs is diagnosed. I have spent hte last 3 years testing and retesting for the same 5 conditions over and over..and since i dont have those then i'm imagining that i'm ill?
Because they have not done their homework And cannot find their asses relative to their heads,i have psychological issues?
And these docs swear they have treated many cfs patients and they dont know rule 1 ..ITS NOT IN OUR BLOODY HEADS!
Sick of thse frikkin docs..but dont know what to do ..my body is falling apart, i need medical help..just dont know where to find what i need.
Sigh..
You are very ill, and so am I. He can do nothing to help you but that doesn't stop the alternative medicine "doctor" from taking your money though. He just told you as much. Read between the lines.
Seriously, if I were you I would take the *hint* and stop.
all that means is that they can't find the issue on the text results nothing more. ugh.
On the other hand, I have been very ill too and had very similar experiences to yours with docs, but as mine turned out, I felt I finally got the help I was seeking from an acupuncturist. She helped me immensely. I'm sorry that your experience wasn't similar, but I guess like typical MDs, alternative docs are all different too.
Your retesting ... was it with a regular M.D./rheumy or with the alternative doc? And were the before/after tests taken from the same office? If not, that can mean a lot as different labs can give very different scores, etc.
Me, I ditched the specialists and "natureopaths" years ago and rely on my GP to prescribe cheap meds that help me get a handle on sleep, anxiety, and pain. The meds are not without side effects, I know, but I am moderately functional because of them. I also get acupuncture or massage when I can afford it.
My two cents: I have found it helpful over the years to focus on managing the symptoms, not in finding a "cure." I had a rebellous phase, too, but it only wore me out (and everyone else, too). It's not so much that I accept my illness; it's just that I realize it's part of who I am now. I can't pretend I don't have CFS but I do try to ingnore it when I can.
I hope you find a treatment plan that helps you, buddy. -- Jeb
Never doubt yourself.
You know what they say - anything a doctor isn't UP on, he's down on.. meaning if he's ignorant he blames the patient.
1. That episode of Golden Girl about cfs. Somewhere on Utube is the "highlights" version of that 2 part episode. Also there is a thread on here somewhere where someone gives a link.
Watching (or rewatching) that after what you have just been through may help you feel empowered.
I hate that your doctor diminished you like he did. So dismissive. I have the feeling he said that so anything you say after he can write off.
2. I went to a cfs/fm support group twice. (It was too far away.) I asked if anyone had anger problems due to cfs. One lady fessed up and told me how she dealt with it.
She said she takes a pillow and kicks it down the hall. She punches the pillow and generally beats it up. She said this works so well that she stopped going to her psychiatrist because taking it out on the pillow worked better.
I must say I've never tried her method. In fact I find it funny. I visualize this nice lady beating the pillow, kicking it down the hall, throwing it down on her bed and beating it up some more. It is so out of character for her I just want to laugh and laugh. Sometimes if I'm really mad it makes me think of her doing that....and it's so funny it really helps.
Whether you beat up a pillow, laugh about it like me, or something else, it could really help to get some of that anger out. In case your like me and letting it out here helps but doesn't comepletely stop you from feeling really mad.
From reading i believe that that combination of inflammation and cortisol, keft unchecked will systematically wear down major organs so will likely lead to cancer, heart disease etc. I dont want to struggle with cfs for a decade and then develop cancer.
So I'm not looking for a cure, I'm trying to stay functional as long as i can (four more years gets my son through high school) and I'm trying to prevent that ongoing damage cycle.
My brain is not clear enough for me to effectively figure out what needs to be done ..i think i need the damn docs but so far i find the lot of them useless.
At the moment, the best we can do is to treat some of our symptoms using (cheap or free) offerings courtesy of Big Pharma and our health insurance, and by pacing ourselves.
At this point in the history of our disease, this thing is for life.
Please stay open to finding some relief. Fibro and Fatigue Centers are now called Holtorf Medical Group; maybe they could offer some assistance. Otherwise, please stay open so that you don't close down and become bitter and feel even worse. Be good and kind to yourself during this process, very important, because we can get down on ourselves which is never helpful.
This is truly a challenging health issue to deal with. I wish you happiness and joy along the way to better days.
be rather unlikely.