Thank you to Marissa, author of “depression introspection” for pointing out this article on chronic fatigue from the New York Times, because yes, my previous post is all about what this article is talking about.
For exactly the reasons stated in this article—the fact that people just don’t get what chronic fatigue means, I rarely use the words. I also, frankly, don’t really want yet another diagnosis. I’m just trying to live my life as best I can. But this article does help explain my reality in an objective sort of way.
Two excerpts from the article:
Q: What is it about chronic fatigue syndrome that makes it so challenging for many people — patients themselves, doctors, family members?
A: Fatigue is a universal human experience, and in fact most people are very hard-working and feel fatigued a lot of the time. And severe fatigue is one of the most common complaints that people bring to their physicians. Because so many people have general fatigue and continue to function, they think, “What’s that? That’s not a disease, it’s just a fact of life.” So there’s a perception both among medical personnel and the lay public that it’s something that you push yourself through, you deal with it. There’s a tendency to think, “Well, you’re stressed out, get some better sleep, take some antidepressants.”
With heart disease or cancer or AIDS, you have an immediate feeling from your family, your work associates, your friends, that this is something we need to be sympathetic to, we need to make accommodations for. What’s strikingly different about this illness is that the majority of people not only have to deal with a particularly debilitating health problem, they also have to deal with the stigma and societal reaction and disbelief and illegitimacy, and that is crushing, Your work colleagues say you’re malingering, medical personnel say there’s nothing they can find so they’ll refer you to a psychiatrist, and your friends begin to complain that you’re never calling them, you’ve rejected them. So this person is in the whirlwind of a terrain of disbelief that is probably in some ways unique……(emphasis mine)
Q: There are many people who think C.F.S. is just a form of depression. What’s the connection between the two?
A: The fast answer is, if you want to do a quick diagnostic test, you could say, “If you were well tomorrow, what would you do?” And the person with C.F.S. would give you a list of things that they want to get back to in their life, and the person with classic depression would probably say, “I don’t know.” (emphasis mine)
And God yes, there are a ton of things I want to do!! I’m so glad this article stated this for me. Because I know a lot of people read this blog and just imagine I’m depressed. The truth is I suffer from chronic fatigue triggered by psychiatric drug addiction and withdrawal. I am not mentally unwell. I am dying to live my life. I want to hike, I want to work, I want to go to concerts, I want to have a beer, I want to dance, I want to go rafting, I want to play with my nieces and nephews, I want to go to parties, I want to have marathon phone conversations with my friends I’ve left behind…oh god, I want to do so much and I would if I wasn’t so damned tired all the time. What I do is mourn the life I don’t have, but I’m not depressed. The minute I feel any brief reprieve from my symptoms I go out and do.
Gianna, this was an interesting post about CFS, I experienced some of it when I was in withdrawal and found it terribly frustrating and quite depressing, however, I take the point about how it differs from depression as such. So glad to hear you are now sleeping better, this is a significant improvement, and so important, brilliant! Love, Zoe
I admit, I fell into that group who thought CFS is depression. As always, you are a constant source of information and inspiration. My thoughts and prayers to you for a fast recovery.
Esther Rantzen writes about her daughter’s recovery [from Chronic Fatigue Syndome] – SAVED FROM A LIVING DEATH Daily Mail, Feb 2007
I think I mentioned before that a friend suffered from CFS for years, or as it is sometimes called in Britain, myalgic encephalomyelitis (M.E.)
What was particularly tragic was that it struck when her youngest child was just a toddler. She had to watch her own kids growing up without being able to participate in the fun, nor even much in the role of mother.
I can remember her calling by for tea and a chat. Suddenly she said “I’m going to have to lie down.” She just flopped to the floor in the sitting room. It was very frightening. “Should we call you a doctor?” “No, it will pass in a while”. This became a common occurrence over the years we were friends.
She confided that she had been taking antidepressants since young adulthood. She saw the drugs as “her saviours” – that she “couldn’t cope without them” In truth, she wasn’t coping WITH them.
II wonder whether Prozac actually gave her ME.
Over the years, she weaned herself off the Prozac, and started the slow process of mental recovery. Over about five years, she had become a very strong woman, earning herself a college degree, and had gone into social work, the last time I heard from her.
There is a very famous TV celebrity in Britain called Esther Rantzen. Her daughter Emily was struck down by ME in early adulthood, and she suffered from the debilitating fatigue for 14 years. Thankfully, she is recovered now.
I have epstein barr and I’ve had mono in highschool. both those can go dormant and then come back when stressed. so I hope when I get some rest from the withdrawals I’ll do better…and here’s to you and your family doing better too!
it’s so hard to be fatigued and not be able to do what we used to, what we long to do still. i suffer with fatigue alot too, i’ve wondered if it was CFS as i have many of the symptoms but have always chalked it up to my thyroid disorder. my brother has fibromyalgia as does my other sibling, and i he has the epstein barr virus in his bloodwork. so all of us have autoimmune problems, and it all manifests in fatigue and aching. thank you for the informative post – hoping you gain strength, sleep, and balance more and more each day, i hope that for us all.
Thanks for sharing this Gianna, it helps me to know more where you’re coming from, and can I just tell you how sorry I am – you must feel so frustrated. By your own limitiations, and those of the people who can’t seem to grasp the reality of this condition.
As Jazz pointed out, I too had never thought of the difference between this and depression in that light. That is really really interesting. I know that when I am depressed, I wouldn’t care two hoots what would be on tomorrow’s agenda if I was to be well. In fact, I would have no *concept* of what it would be like to feel well, because I literally forget. NOTHING seems appealing, or worth the effort, and it seems like it will always be that way. But at least I can’t remember what I’m missing and there’s no mourning for that old life… it’s more like mourning for the life I have to live at this moment. So yeah, that’s a very different experience indeed. I’m glad I understand that difference now, thanks. ~coco
G – I’m glad that article was useful. It helped me to understand more of what you deal with now. I also realize that I definitely don’t have CFS. (But I’m tired ALL the time.) 😛
I know I don’t have candida—-I take excellent care of my gut.
I don’t think all mental illness has a physiological root…some of it may but life experience and trauma as well as diet, nutrition, infection and all sorts of things can cause depression and other forms of mental unwellness.
Trauma in my mind is more significant then the rest quite often—at least in the population of people I worked with as a social worker…but all the rest can help one get healthy so that they can deal with the trauma…
Sometimes really good therapy or intensive meditation is needed more than nutrients. other times it’s the other way around.
I seem to need it all. It’s not like I have perfect mental wellness…I have much to learn about acceptance so that I will suffer less. I’m by no means happy most of the time…
I feel your passion to live, if only you could get beyond the fatigue. I can so relate. I agree that you clarified the difference between classic depression and CFS here in an illuminating way. But if we say that all “mental” illness really has a physiological root, if not chronic fatigue then what ails those classically depressed?
I was just wondering if you’d ever tried Grapefruit Seed Extract, the drops. Every journey is very different, but for me now when I can’t shake the fatigue, it’s candida flaring and this is a good way to quell it without a lot of die-off…GSE gives me a sustained energy boost and banishes the grumpiness. Just a thought, not the answer.
All my best, Sue Westwind
thank you Lisa, and welcome to my blog…
I suffer from a lot of pain too. I’m guessing that is your issue as well…
CFS goes along with fibromyalgia a great deal of the time – another dx that people say is “all in your head.” If you think it’s not real, you should try living with it.
Good luck, Gianna, and thanks for writing these entries.
I have a friend who suffers from CFS, and it is amazing how little support she gets, considering how debilitating the condition is. I thought that bit about the difference between CFS and depression was interesting…I mean, it makes sense, but I’ve never really thought about it before.
I’m glad to hear that your sleep is improving. Sleep is so important for our well-being.
as with all psych drugs one must come off of them (as a general rule) at 10% or less of CURRENT dose waiting inbetween tapers to feel better.
Please read my “about” page…there is lots of info and there are books you can buy written my psychiatrists to help.
Your diet is extremely important too…
the about page is here:
it has enough information to get you started on researching how to do things safely and take that information to a doctor who can help you.
I just stumbled onto the site. I’m trying to get of efexor, and it is quite difficult. Also taking a bit of Risperdal (0.75mg). Anyone with experience getting off efexor ?
Yeah, I avoid new diagnoses like the plague, too.
Interesting difference between CFS and depression. Food for thought.
Glad you’re getting more sleep.
Not a ramble…thanks for sharing.
oh…also…to everyone, my risperdal withdrawal is going well and I have indeed improved in small but significant ways. I sleep 6 – 9 hours now up from 2 or 3 for several months. the improvements are slow and I’m far from well, but they are undeniable.
in spring of 1989 i was dx w CSF. it’s what is triggerd by stress and med shifts. my doctor called me w results himself, after i had read an article in the newspaper and said, :”i think this is what i have” –back then called “the yuppie flu”. he laughed. then called me after bloodwork and said, “well you don’t have Lupus; but you have chronic eppstein barr virus”(cfs). it’s transient. comes and goes. i had that long, long before any psych med entered my life. yet. the GP(PCP)offered me Prozac. I declined wout knowing what it was, i said, “not gonna be a mom on drugs, what else?” “vitamins”.
life took it’s own way what, some 20 years later….but this is a real deal.
titrating off meds always triggers my CFS.
sorry if this was a ramble.