Blog Classic: Feb. 24, 2010
When an illness is named for its chief symptom, it sounds like that symptom is the only thing that's wrong. Thus, the name "chronic fatigue syndrome" perpetuates the myth that people who have it are "just tired" and not really "sick" at all.
This myth is like salt in the wound to people who are disabled by chronic fatigue syndrome. Not only does it go way beyond a single symptom, the word "fatigue" doesn't begin to accurately portray the utter exhaustion and lack of energy these people have. Here are some of the consequences of this pervasive myth, along with the truth:
- People say, "Just get some rest -- you'll feel better." FACT: Multiple sleep-related abnormalities cause unrefreshing sleep, so no amount of rest actually relieves the fatigue.
- People say, "Yeah, I get tired, too." It's true that everyone gets tired, and that most people in our society are sleep deprived. Many people feel "chronically fatigued." FACT: Those people would feel better if they took a restful vacation or improved their sleep habits, and fatigue is generally their only symptom. People with chronic fatigue syndrome deal with up to 50 other symptoms -- including cognitive dysfunction (brain fog) that can be as debilitating as fatigue, flu-like body aches, sore throats . . . and the list goes on and on. See Chronic Fatigue vs. Chronic Fatigue Syndrome.
- People say, "You should get out more," or "exercise more," or "snap yourself out of it." FACT: Being active causes symptoms to worsen, sometimes dramatically. (See Debunking Myths: 'More Exercise' for Fibromyalgia & Chronic Fatigue Syndrome.) As for snapping out of it, would people spend their savings or go into debt, lose their jobs, isolate themselves from family and friends, and give up their dreams and independence if they could just "snap out of it"? The people who come here looking for answers are desperate to find something that helps, and they've often tried dozens of different treatments.
This myth is especially damaging to people with chronic fatigue syndrome, because it causes the illness itself to be dismissed as people just making a big deal out of something everybody deals with. In an attempt to get away from this myth, researchers and advocates have tried using different names for the condition, but so far none have reached acceptance in the medical community because of controversy over how medically accurate they are. Until we understand this condition better, we'll likely be stuck with the name and the myth that comes with it.
How has this myth effected you? Do people in your life believe it? Leave your comments below!
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- A Simple Explanation of Chronic Fatigue Syndrome
- Diagnosing Chronic Fatigue Syndrome
- Living With Someone Who Has Chronic Fatigue Syndrome
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I am sick and tired of one being sick & tired & 2 people judging me! Everyone has the answers and they don’t wanna hear it from us. I don’t recall asking them for their advice, but I always hear it!
I don’t care what they call it or what people say about me. We all wish we could be like we used to be. My hope is for a miracle cure and with more research that just might happen. You only have one life and if it is lived in bed, then make that the best bed ever.
it took me 44 years to get a diagnosis & by then i was almost dead. The list of symptoms was too confusing for all the doctors I’d seen til i found a prof that referred me to the hospital i’ve been attending since 1994…i am a lot better now than i was then but have been housebound 7 weeks so far this year..all of it really.
I have recently been diagnosed, but it took some time…most doctors told me it was all in my head & just wanted to give me antidepressants…other people even family were the same. Being that I just had a baby as well made it worse..everyone thinks it’s just something that I will get thru…NO ONE realizes how BAD you really feel! All the crazy symptoms!!!
I have Hashimoto’s, adrenal exhaustion and other hormone imbalances as well. This has been a NIGHTMARE! I do feel the worst part is that “healthy” people just don’t get it.
I just don’t talk about my illness unless I have to anymore. My family and friends are very supportive. They knew me before I got sick. They understand that if getting some exercise was the cure, I would have never gotten sick in the first place. They know how well I took care of myself. They know that having finished two marathons and a couple triathlons that I am not enjoying spending most of my day on the couch. I know that having pushed myself through the “wall” of the last 5 or 6 miles of a 26.2 mile foot race that I have the mental capacity to “just snap out of it” if that were the answer. I have decided to not suffer fools any longer and I respond to the stupid comments with a nice long tirade. It saves the next person with CFS from having to listen to the insulting remarks. You have to understand that the reason some people make dumb remarks is just because they are DUMB! Their remarks open the opportunity for you to give them the diagnosis (dumb) and maybe suggest some treatment ideas. CBT, exercise some berry from the rain forest or “just start using your head”
Three cheers for you, Dave. I’ve had it for 20+ years and I never mention it anymore. But I do like the idea of prescribing the proverbial berry to those who don’t care to listen, or don’t care to care. Hang in there, buddy.
Dave, you nailed it perfectly-if exercise is the cure, I’d never have gotten sick in the first place! Thank heavens my husband knows what a go-getter I was before I crashed so badly. (His affectionate nickname for me was “bulldog”, for my stubborn, energetic tenacity.) Anyone who thinks I’m lazy doesn’t deserve the energy it takes to set them straight.
I forgot what I was going to say… Oh yeah, Healthy people will never truly understand what we go through. I don’t really talk to most people about it. I guess I know people will have their opinion not matter what I say. I am so glad that education is starting to happen.
I’m not sure if I have Fibromyalgia of CFS, or both. I really can’t say which is worse. It helps to hear there are others out there that understand even in the slightest what I go through each and every day. Keep up the good fight folks.
Prior to having a hysterectmomy 6 weeks ago, I had to see a hematologist due to a protein defiency. When he asked me about my health history and I said I had Chronic Fatigue Syndrome he waved his hand in the air and dismissed it and said, when you’re tired and they don’t know why they call it Chronic Fatigue Syndrome. We all get tired. When it’s sunny out I’m peppy and full of energy. When it’s dreary out I’m kind of ho-hum.” I told MY doctor I will never go to him again! I am so sick of those who are supposed to be medical professionals dismissing my illness! This is WAY beyond “just being tired”
I just read Dayna’s comment and this is exactly what I just wrote in an email to a friend, i.e., “sick and tired of being sick and tired.” This sucks; I hate it. Now I’m having pain from a dry socket — had a tooth extracted Tuesday and now the dentist won’t be back until Monday:( Supposed to be having cataract surgeries on 3/15 and 3/29…I’m going along one minute at a time…one day is way too long to plan ahead (ha-ha).
I just hope for the best for all of you. I learned after about two years into CFS to not waste my time and money returning to a doctor that does not take you serious. As a patient it’s easy to put your doctor up on a pedestal, but you wouldn’t keep taking your car back to a mechanic who couldn’t find the problem and kept charging you. You would think that mechanic was incompetent. Remember that the doctor is working for you. Fire that doctor and move on to the next. I finally ended up with a rheumatologist who keeps up on all the research which is what I thought they were all supposed to do. Cheryl I am fortunate to have a wife that is supportive like your husband. I cannot imagine what this would be like without her.
I have suffered with chronic fatigue for years, and you are all correct that Dr or people do not understand and take it seriously. I have felt wonderful that last 4 months though from a supplement I am taking. I always knew diet and nutrition were a big part of chronic fatigue, but just never how much it can help.
what supplement are you taking, please? not that i haven’t tried many during the 23 years of having this miserable ailment……as for being active prior to cfds/fm i was a happy go lucky yoga instructor and walked 2 miles everyday.
I had what I call chronic fatigue from about 16 – 24. Last year (age 30) I ran away to the circus where I managed to lift a woman above my head !
Discovering the name Chronic Fatigue gave me a starting point for getting better but actually the thing I am most grateful for was the physician who told me he never diagnoses chronic fatigue – “There’s always a physiological reason why you’re tired,” he said.
So instead of lumping me with a label for something that has no cure, he went about finding what was going on for me at that time.
I learnt to listen to my body and understand what it needed and slowly, slowly work my way back to being healthy. I have no doubt that a lot of it was being in a life situation that didn’t work for me.
If you are interested, I have written a small book on my journey and it’s available here for free:
http://whatmybodywants.wordpress.com/free-resources/
Best, best, best wishes and hope…
Rachael, I’m glad to hear you are better and happy. It is possible, however, that you never had CFS, and it is possible that you did, and got better, which would be awesome. Just don’t forget about how the rest of us still feel. I didn’t read your book, but if you have something to offer CFS patients, keep it up. We need all the exposure and help we can get. I was a star athlete and would give anything, ANYTHING, to be able to do sports again! I would love to hear from more people who have had CFS and gotten over it. Maybe we could gain some insight from comments from people like you. Comment on…
Hey Krissy
The thing about the term Chronic Fatigue is that it doesn’t actually name an illness per se, like the ‘flu’ tells you what bug is wrong with you. Chronic Fatigue simply means you suffer from a particular set of symptoms. Every person could have a different reason for their suffering, so if you go about looking for The Cure to chronic fatigue I don’t think you will find it.
You need to find out what is wrong with YOU.
I absolutely know how you feel because I was there for a long, long, long time. I couldn’t get out of bed. I had to stop working. I was really, really sick.
If my book (which is free by the way) doesn’t feel like it’s useful for you then of course don’t read it. But the main lessons for me were to start to learn my body and work with a doctor I trusted.
good luck!
Rachael
I’m lucky to have a GP who diagnosed me with CFS fairly early in my illness. It would have been especially tempting for him to diagnose it as psychological since I had a recurrence of Major Depressive Disorder at the same time that I got the sinus infection that triggered my CFS. For several months, he treated the depression, and I got better. But when the depression was in remission but the fatigue was getting worse, my GP recognized something besides depression was going on, and dug deeper.
Of course, I’m also unlucky that, though he takes me seriously, he doesn’t have anything to offer me by way of treatment. Stupid NHS and stupid NICE guidelines. >.<
Hi Hope Ann.
I’m really glad you are in remission from depression. It’s hard to know which comes first isn’t it…if you can’t get out of bed in the morning it’s pretty hard to feel good about life!
Anyway, the thought that pops into my mind is that if you had had a sinus infection as well as depression, your body was probably under quite a lot of stress – worn down by the illness and all the chemical changes of depression. (There’s a bit here about my take on stress on the body: http://whatmybodywants.wordpress.com/free-resources/)
It makes sense that it would take some time for your body to recuperate from that. Have you considered yoga or meditation – or even just quiet time for yourself where you give yourself permission just to let yourself be tired? I know i found even my time ‘resting’ was spent telling myself, “I shouldn’t be so tired”.
Good luck.
The word legalization is too non-specific. Unfettered legalization wouldn’t help to keep it out of the hands of school children. There needs to be a legal age limit, and that’s not consistent with unfettered legalization.
If we’re limiting our opinions strictly to the specific issue of medical cannabis that’s a decision that should be left to doctors and scientists. It’s not for Know Nothing prohibitionists or politicians with a political agenda. It is currently illegal at the Federal level for them to even study the possible benefits, much less gather enough information to make the call.
I’m perfectly willing to shut down and forget about medical cannabis if real, good faith research finds it to not be a valid medicine. Now that’s not real generous of me because I know the evidence is there, that it is compelling in the extreme.
Last year the Iowa Board of Pharmacy voted unanimously that cannabis should be recognized as a valid medicine and moved to schedule II. It was a particularly remarkable vote because the rescheduling petition was filed in 2008, they saw no need to entertain the presentation, and had to be sued, court ordered, and dragged kicking and screaming to the table to consider the petition that led to their stunning 180 degree turn around. I really think it’s safe to infer just from that action that the evidence is simply overwhelming.
http://stopthedrugwar.org/speakeasy/2010/feb/18/iowa_board_pharmacy_recommends_m
In June, Oregon followed suit:
http://www.oregon.gov/Pharmacy/Imports/News/June2010PressReleaseMarijuana.pdf
Maryland is this close >< to doing so, and the Maryland Board of Pharmacy has endorsed rescheduling.
http://www.delmarvanow.com/article/20110215/NEWS01/102150376/Md-lawmakers-shape-medical-marijuana-bill
’syndrome’ just means ‘we don’t know’. i think the name needs to be changed to POST-VIRAL EXHAUSTION. i apprec that cfs was at least a start to naming a set of symptoms and signs, but it said more about the mystery of it and how little was known at the time, rather than a descriptive helpful name. also, ‘cfs’ is an umbrella term which people get bundled into if showing certain symptoms. so for the individual whose cfs developed suddenly after a hit on the head, they have a POST-TRAUMATIC EXHAUSTION.
I just can’t say enough about Doctors who say there is no such thing as Chronic Fatigue. Over the years I’ve been to more Doctors and have more tests done than can be imagined. I probably hold the record for the longest duration for suffering this curse. At least there seems to be hope with more research and understanding. You see I have suffered with CF for about 70 years
Hi.
To many hospitals and docs to live a life where the only time u go out is in a ambulance.
Where you cry every day in pain.
Where u dream of just a little normality.
That to me is my life a life with p.v.f.s. or Me.
Thank you for such a well written blog.
I was diagnosed with both CFS and fibromyalgia about 25 years ago. I rarely tell anyone about the CFS diagnosis since fibromyalgia also causes severe fatigue. I’ve never liked the name “chronic fatigue syndrome”. Fibromyalgia is enough of a diagnosis for me to deal with every day. I believe they’re really variations of the same illness anyway.
I’m 57 years old now and have lived almost half of my life with constant pain, fatigue, and many other symptoms. I barely remember anymore what it feels like to just be “tired”.
It’s very difficult but I try to hang on to some hope that someday there will be better understanding and much better treatment for “CFS” (and certainly a better name for the illness).
Hi Rachael.
The “bilateral temporal hypoperfusion” occurs even when health is relatively good and symptoms not too bad, for people with CFS.
There is a mixed team of specialists working together on the issue of an underlying cause/mechanism for the reduced blood flow – it would appear that it is uncommon for people in general to have reduced flow in a specific pair of lobes rather than throughout the whole brain, a whole hemisphere or at a focal point of damage. Until they better understand what is triggering and maintaining the poor circulation in the temporal lobes, the best advice they have been able to give is to improve blood flow to the whole brain. Although the temporal lobes will still have comparatively less circulation than the rest of the brain, in absolute terms when the whole brain is better perfused the temporal lobes also should be getting more blood.
I do find that addressing circulation helps a bit. I take a low dose of a hypertension drug; use a range of recommended nutritional supplements; and use posture to increase brain circulation, spending as much of my downtime as possible lying down with my legs slightly raised and rarely sitting in a chair unless I can put my feet up. I do as much as possible while lying down: talking on the phone, using my laptop, etc.
When I have been standing/walking for too long I get dopier and dopier. For example, by the end of yesterday’s half hour dog obedience class I could not tell my left from my right and muddled up the footwork and hand signals. My puppy will never make it to the next grade until my skills become so automatic that I get it right even when my brain is dysfunctional. Then I had to lie down on the grass for a while before I attempted to drive home.
Cheers, Penelope
I had CFS in 1985 and only one Doctor believed it was not a “mental” condition. And he did not know what it was or what to treat. A year later I got out of bed, but my life was changed forever. Symptoms come and go now and family and doctors just label me was a whinning hypochriac. I wish they could feel like I feel for one week! I am almost 60 and last year it came back. Not was bad as 1985 , but kept me housebound. Sore throat, fuzzy thinking, tired arms/legs and IBS! Now I conrol IBS with Gabapentin 100mg x3 low dose. But I am sad I will spend the rest of my life living with something 98% of doctors , family and friends do not understand or care about. I just hang in there and pray a lot. Oh stay relaxed…acute stress triggers mine.
I was diagnosed a little over 8 years ago with Fibro & CFS but had been suffering for close to 20 years, if not longer. Looking at the symptoms of both diseases, I think I may have been suffering when I was as young as 10 – 12 years old.
I’ve suffered migraines since I was 5, panic attacks since I was 7 or 8, IBS since I was 10, and have had issues with fatigue and overall pain since around the same age. I was abused by a family member from the time I was 7 until I was 15, and was in abusive relationships from the time I was 17 until I was 32. I know there is no direct correlation between abuse and Fibro or CFS, but I do think the amount of trauma one experiences in life may contribute to how the severity of the disease.
When I finally started looking for a diagnosis to go with all my symptoms, I had several doctors tell me it was all in my head, I was hypocondriac, I needed therapy, there wasn’t anything wrong with me, etc.
And then I found the most wonderful GP ever….he specializes in fibro and he actually cares…..he takes all the time I need in an appointment to answer questoins, he’ll discuss alternative therapies, homeopathic treatments, etc.
Unfortunately, my symptoms have been progressing the past 6 – 8 months, but I still have hope because I have a good support system with my family and boyfriend and I have an excellent doctor.
Adrienne – thank you for all you do for us!
do not believe anything that comes from dr. peter white and dr. simon wessely as they are only phycologists not medical doctors or infectious diseas doctors…to even call these quacks doctors is a complete disgrace to the medical profession…even their cbt/get papers could not be replicated by dr. nancy klimas…dr. paul cheney even thinks it is insane and ludicrous…the agenda with these neurotics is a plan to try to change the w.h.o. code of this illness in 2013 to a phyco-somatic illness…that will never happen and there is more serious physical research to be published next month and is ‘replicated’ science…also remember this and it is a fact, white and wessely do not know how to differ from a true cfs patient and a person with chronic fatigue…they do not know the difference when they see patients…mark my words also is they will be prosecuted and their licences will be revoked once they are convicted in criminal proceedings and a large number of medical doctors will be testifying against them and there also will be liable damages brought to them and these are not the only 2 who will be prosecuted…sincerely aidan walsh southampton, u.k. god bless all of you who are sick and trust me, things are now in the planning stages….it is now all in a matter of time…
I have it too – about 10 years now. Have any of you guys ever thought that we are similar to the people in the movie “Close Encounters of the Third Kind? We are like the ones who were “visited” or experienced the aliens and all had the same symptoms in very random and different places. They didn’t ask for it and we didn’t either. No one believed them, even though they were driven to build the mud mountain, go to the mountain, etc…etc. How can SO many people have similar or exact symptoms of others with the disease, but yet so many doctors, friends, employers and relatives don’t “get” us? We don’t even get it ourselves, much less have the energy to explain it. It is great to have this blog as an outlet to just read one sentence from someone else and know immediately-no explanation needed. They “get” me. Thanks, everyone.
Eleven years ago when I got this, I was in the restaurant business. I was high energy, worked sixteen hour days, often seven days a week. I loved it.
Then I dropped. Literally. Fainted in the middle of the floor. A trip to emergency, I was told by the attending doctor that a tylenol and some rest would put me right.
Well it wasnt alright. I was so weak I could barely make it to the bathroom. This went on for months. I got sent to a specialist in Vancouver who sent me for a CAT scan, MRI, cardiogram (I was having heart palpitations). Everything came back normal. He told me to get up, start walking and enjoying my life. I wanted to punch him, except I was too tired. I went home to a different doctor who told me I should start to concider that it was psychosematic issues and needed suitable medication.
To make a long story short, I found alternative methods including accupuncture, that slowly helped me get back to normal.
I still have to be careful not to overdo things. Stress does not help! I have also found some supplements that have given me an immense improvement in energy and mental clarity.
I also have a good doctor now, and a family who supports me. But it has been a long long road. And I dont think that your body is ever completely better. I think that I will always have to be careful and watch not to over do things to much.
I have a great doctor who is sympathetic towards any Fibro symptoms. Unfortunately, she continues to tell me I have extreme fatigue not Chronic Fatigue. I’m not sure what the difference is but I am tired of feeling like I have no energy. If I take a shower I need a nap. I have trouble driving because I can’t stay awake. I sleep 12 hours and wake up exhausted. Then there are the other nights I sleep 1 or 2 hours and even though I am exhausted I can’t go to sleep. I was diagnosed 4 years ago even though I know I had Fibro long before that. As far as all the idiots go that think they know just what we should do to feel better. They should have to live in our shoes for a week. I also keep a copy of Fibro for Dummies around when I get a skeptic at my home I hand them the book and tell them they should read and learn before they speak. LOL
I have had fibromyalgia and chronic fatigue syndrome plus bi-polar and depression since I was about 11 years old. My husband was great and understood, until about five years ago. I had breast cancer followed by gallbladder disease followed by Mono starting when I was 35 years old. My husband lost patience when I got to gallbladder disease. Now I am on permanent disability. On the few days a week I can’t get up my husband yells at me and upsets the children. I don’t know what to do anymore. My doctors all say that I am as stable as the medications can make me. On the one hand I can understand his impatience. On the other hand, his yelling just makes the pain worse. I don’t know what to do anymore.
I’m 26 years old so you can imagine how har is to suffer cfs, but my family is pretty understading though at the begining they were very frustrated because they thought that I was just lazy but people do not understand is that the more you try to have a normal life the more “tired” you feel, so if you know someone with cfs try and be supportive instead of being critical .